Jeannie's World

2012-01-31T13:28:00.002+01:00

I am still alive lol xx

Update

2008-04-20T14:19:00.004+01:00

We have booked our holiday at long last. Were going to Majorca and have booked an apartment for seven days, starting on the 17th May. There are ten members in a our party, mostly Darren's family. It will be fun fun fun woohoo.

Lithium (Li): It will be 3 months on the 8th May since I began taking Li.

My first blood test didn't detect any Li in my system so upped my dose, bloods taken on the 4/2/08 showed my Li serum level at 0.25. On the 4/4/08 I upped my dose to 750mg blood level 0.29 on 04/16/08. I have today increased my dose to 1000mg.

Ive noticed a couple of things: Back through the years my hands/fingers would weaken more than usual but after a few weeks they would return to there normal state and this is how it has been for 3-4 yrs. Only this time they weakened 1-2 weeks prior to taking Li and haven't regained strength.

The second thing is my right ring finger stopped suddenly lifting up 4 days ago. When I straighten my fingers out that finger pulls down towards my palm and also has a major twitch/spasm.

The third thing is I can now spread my left thumb out a little bit, not done that in a few years.

Until next time take care xxxxxxx

ALS clinic

2008-02-14T15:04:00.003+01:00

It seems forever since I last blogged.

I'm doing good but keep having episodes of loss of appetite which of course does nothing to help maintain my weight, I booked an appointment at the ALS clinic to enquire about having a feeding tube...well what a waste of time that was, we felt so rushed and nothing really got said or sorted. The dietitian did prescribe me a liquid called Calogen, Calogen is a fat emulsion, suitable for fortifying your daily diet either on its own or in food. So I'll see how it goes adding this stuff to my diet, if I continue to loose weight a feeding tube it will be.
The new neuro I saw didn't even examine me and was more interested in finding the two pound coins which fell out of his pocked and rolled under the bed. (sigh)

You may of heard about the Lithium trial which recently got published http://www.pnas.org/cgi/reprint/0708022105v1.pdf I'm very sceptical over this study just like I am with everything else, obviously the trial needs be performed properly to get true results.
I read some literature on lithium some six yrs ago and wanted to self trial it back then but didn't for some unknown reason. Well my GP recently agreed to prescribe Lithium which I started on Feb 8th, so far so good and I haven't noticed any side affects. I will have bloods monitored regularly because lithium is highly toxic and can damage Thyroid, liver and kidneys so monitoring is IMPORTANT.

There is an online trial for lithium users please see here http://alslithium.atspace.com/italian.html

Until next time take care xxx

My daughters

2008-01-15T10:21:00.000+01:00

Here are two photos of my daughters on their motocross bikes which we brought them for Christmas.
First picture is of Charlie, second Bethany.

Christmas Day

2007-12-27T09:56:00.000+01:00

We all had a fantastic Christmas day and father Christmas brought everyone what they wanted. Both girls got a motocross bike and all the protective clothing, helmet and suit, which they both love. Bethany jumped 4ft in the air when she saw her motocross bike, its lovely to see the reaction on their faces, a magical moment not to be missed.

Today is Darrens birthday...Happy birthday hun.

Ive added a few pictures and will add more when I upload them, dont laugh!

Merry Christmas

2007-12-24T16:27:00.000+01:00

We are all ready for Christmas day, and all extremely excited woohoo. we have my parents for Xmas day dinner and in the evening we will visit various family members. O boxing day we have been invited for dinner at Darren's brothers (Wayne) so that is something to look forward to.

This morning we received the most beautiful table arrangement from my special online friend Libby and family, it looks just wonderful in the centre of our dinning table, I will upload some photos soon.

Merry Christmas and Happy New Year to each and everyone of you.

Until next time, take care xxx

Video of me walking

2007-10-30T13:40:00.000+01:00

As you can see to the right of my blog Ive added a video of me walking with the aide of Darren, Charlie recorded the video.

I can not walk without Darren's help or wearing my leg braces (afo's), my feet still turn inwards and over on the side even tho i wear plastic afo's, which is a real problem......any suggestions will be gratefully received.

Until next time, take care xxx

Some photos of our home

2007-10-28T12:36:00.000+01:00

Picture 1: Lounge
Picture 2: My chilling chair
Picture 3: Part of the hallway
Picture 4: Part of the dining room
Picture 5/6: My bedroom where I sit at the end of the bed on my scooter with laptop on my lap, chatting wid all my friends.

Stem cells Eden Belize

2007-10-15T17:20:00.000+01:00

OK, I know darn well I'm not the only person who believes the treatment in Belize is a scam, I'm writing this because I am sick and tired of being called negative, HELLO I'm living in the real world.

Why is it when someone doesn't agree with something you get called "negative and no hoper" but the other person can say something such as stem cells work, and it is deemed OK?

Any person in their right mind knows for a fact stem cells do NOT work 1-2 days after being administered them, yet these are the claims being made by some ALS patients, when truthfully the minor improvements are that of mind over matter, massages and placebo affect.

I received stem cells from human umbilical cord blood 4.5 yrs ago from the same quack who runs eden in Belize, I too at first thought it was stem cells giving me minor improvements but after much research I realised it wasn't the stem cells after all as I too noticed improvements on the first day of receiving the cells, it was steroids and all the media hype attention I was receiving.
I could of gone back to the news team and news paper claiming such improvements and giving false hope to pals (person with ALS) but i didn't, how could I? I'm not that sort of person, I'd rather give no hope than false hope.
It's sad to read such claims as patients who suffer with ALS are selling their family homes and life savings to afford such treatment.
Some folks might think gaining minor improvements isn't so bad and is worth every penny, but it is NOT good for those pals who sell everything to afford the treatment and what for? to gain a few minor improvements and then have to struggle with life after they continue to progress again, struggling because they have spent all there monies.
Thats my opinion and does NOT make me a negative person (sarcastically rolleyes)
Until next time take care xxxxxx

Sleep study Great news

2007-09-18T18:14:00.000+01:00

GREAT NEWS, I got the all clear for another year woohoo lol

On Monday I arrived 1 hr late on purpose, arrived at 3pm. I got to see a lady Dr (dont recall her name, at approx 5pm, she was great and understood about me being weary over the blood gases being taken, she said she had hers took once and never will again lol, well she felt my wrist to see if it was worth attempting to take blood, the next thing i knew the needle was in and blood drawn, result came back in a matter of minutes and all was perfect, she said "that is as good as mine" and she doesn't smoke lol so that is the first good new hehehe
Sleep study, went to bed and was hooked up to the monitors at approx 11pm geeesh the bed was horrible, so hard and uncomfortable, dazs bed wasn't any better lol
Well anyways the O2 monitor was showing 98 and the CO2 monitor at 4.5 (must be between 4-6), so they were fine, so far so good i thought, I eventually get to sleep tossing and turning, at 2am was woken by one of the machine alarms...it had to be the CO2 monitor didn't it, I was flipping shocked to see the reading was 17.9...nurse came in and calibrated the machine and off I went to sleep again, know sooner did it feel I went to sleep the flipping CO2 machine was beeping once again, well I thought thats it Ive gotten loads worst and I'm not able to clear my co2, this was at 3:30am, the nurse came in again and the reading was 1.5, so the nurse decided the machine is having a problems, Off to sleep again and woken by the alarm at 6:45am again, reading was 1.5. Nurse blamed the machine and said it was OK, she unhooked me and off to sleep again lol, finally gave up and got up shortly after 8am.
Male consultant came to see me at mid day and said all is perfect just like and even better than healthy normal people, he said i will see you in 1 yrs time as everything is stable and that i was discharged after id performed my breathing tests (they gave my bed away at 9am, so they knew they were sending me home). I said to him what about the breathing test results, he said they are important but not as important as the blood gases. FVC was 4% higher than last yr up to 60% sitting up woohoo.
Consultant also said he cant see me needing a bi pap/vent for the next 2-3 yrs at least. (Jeannie beams from ear to ear lol).
_______________

Colon cleansing; ewww yuck!

Rama posted the following article on PLM website wellhttp://www.blessedherbs.com/ (search colon cleanse) I must say Ive never seen anything so revolting in my life, the pictures are disgusting, take a look but do it after meal times lol.
I am going to order the 8 day program to see if it works, in other words to prove if it does or doesn't work...glutten for punishment me lol

Well until next time, take care xxx

Wow

2007-09-05T10:02:00.000+01:00

WOW I cant believe how times fly's....

I'm still here fighting this awful beast, I have noticed my arms are a lot weaker, I can know longer raise my arms but still manage and struggle feeding myself.

I was due for a sleep study in July but it got postponed due to an emergency patient, it's now scheduled for the 17 th of september...I know my FVC levels will be lower and hopefully the Dr will prescribe me an bi pap, I dont feel breathless or noticed any breathing problems while laying down flat but it doesn't mean my breathing is OK. I seem to breathe shallow, sometimes it feels I'm not even taking breathes in but I can still manage to blow my daughter swimming ring up, oh and shout lol though shouting brings on spasms in my throat.

Last week we went on a short 4 day break in an wheelchair accessible caravan/trailer, we all had a great time and I'll post some pictures soon, god knows how the pictures will turn out as Bethany my 6yo took most of them...The beach was literal less than 5 mins walk away, we could hear the waves at night with only the sand dunes parting us.
On the Thursdays Darren's brother Wayne, his girlfriend Michelle, son Joshia and daughter Georgia came to see us and spend the day with us on holiday, we spend the day close by the beach and the kids including Darren and Wayne were all going on rides at the fair. Wayne took pictures so i;ll ask him to email me some of them and i will post them here at a later date.
Below is a picture of a caravan which is the sort we stayed in, apart from ours had a wheelchair ramp. Ironically the lady who owned the caravan site passed away from ALS/mnd and her sister Cathy now runs the site, most proceeds going to the MNDA.

Until next time, take care xxx

Seven Years

2007-06-07T11:19:00.000+01:00

Well it's now been seven years since I first noticed symptoms of ALS/MND and will six years next month (July) since I got diagnosed, I feel I'm doing pretty good considering.

The speech device I'm getting is called "Say it SAM XP1" it's a 3 in 1 unit: speech device, PC tablet and an environmental control unit, it works via touch screen and can also be controlled via a switch, head mouse, eye gaze etc...seems simple enough to use, I will be getting a external dvdrw and keyboard with integrated mouse just like a laptop.

Darren has completed our bedroom, new bed, new bedroom suite, and bedding set, just waiting for a friend to shorten my new curtains and make a pelmet from the off cut...it's not the bedding set I wanted but it's brand new and was free lol I would like to bring some dark reds in the room to make it feel warm & cozy.

Until next time, take care xxx

Pictures of our back garden

2007-05-31T11:27:00.000+01:00

Here are a few pictures of our back garden, Darren planted loads of new shrubs and flowers which will hopefully look great when fully matured.

Bethany's School sports day

2007-05-31T11:14:00.000+01:00

Me & Darren went and watched Bethany participate in her very first sports Day, previous yrs it got cancelled due to the weather, she did absolutely great bless her, she came 3rd in the egg & spoon race and was doing so well in the skipping race until she dropped her rope...she was in the brown team which ended up winning the cup woohoo go brown team lol

It was a great morning, sun beaming down and such a memorable event, we throughly enjoyed it.

2007-05-15T11:55:00.001+01:00

2007-05-14T11:04:00.000+01:00

I have currently got a mild chest infection which Ive self-prescribe antibiotics to hopefully treat the infection, it isn't too bad but getting the phlegm up is a nightmare and so frustrating when sleeping as you can hear and feel the phlegm in my pipes.

Ive also had what i think is a tickle on the right side of my throat which makes me feel like I'm choking, it makes me gulp air in which can get painful as I'm filled with air...Im not sure what the cause is, could be just a tickle, spasm or saliva, It doesn't do it when eating or drinking and If i catch it earlier enough and have a drink it doesn't o it.

Ive purchased a new set of wardrobes which will be delivered on the 26 and new bedding set with matching curtains, Darren will be rather busy for a few days, he has already redecorated Charlie's room 2 weeks ago and she too got a whole new bedroom suite and today he is redecorating Bethany's room and she also has a new bedroom suite.

The ALS chat room http://client1.sigmachat.com/sc.php?id=144320 has been renewed and we have many new members and over 90 profiles filled out...Ive spoken and seen some pal friends via yahoo messenger web cam which was really great, I'm still amazed how the whole internet process works. Just a pity my voice wasn't slightly clearer as I only spoke a few words.

well until next time, take care xxx

Thanks!

2007-04-12T16:02:00.000+01:00

Thanks to all those who emailed me support regarding getting out, I must stress Darren at the moment only gets 2 hours max per week going out and that isn't fair on him.
I forgot to mention when I updated last time that I had a visit from my local speech therapist (ST) and her assistant and also a specialist whom deals with communication Aide's and his college OT from a London Hospital...so in total there was 3 ladies and 1 man at the visit and the man proved exactly what I was telling my ST a few months ago...the fact is most men are ignorant and dont take time to listen to me, all 3 ladies whom I never met or spoken to before (apart from ST she met me once before) all understood exactly what I said, yet the man didn't have a clue.
I did make everyone laugh as I told the guy straight what I thought of him ignorant etc....all 3 ladies agreed lol and he made a comment about bullshit and sex but I and the other 3 ladies didn't get the gist of what the heck he was talking about.

Well anyways he was trying to fob me off with a litewritter communication aid which Ive already tried and sent back to the mnda, I said I'd like something that I could adapt along with my progression and is portable with a spell checker lol, so I mentioned the system Stephen Hawking's uses and all I heard was gasps and was told the system costs £12,000, I was like so what you cant put a price on items we need for communication...and he went on about how they would mount a separate PC screen to the front of my scooter so my neck didn't ache looking down.
They went away with Hawking's system in mind and I'm going to try a few systems before I accept whatever one, so try one for say 4 months then another and so on.....geesh by the time Ive found the right one I'll be 60 lol

My power chair has just been collected for repair, know doubt it is the batteries and they claim If there is two or so months warranty remaining on the chair (warrant run out in June) the new batteries wont have 12 months warranty but only till the original warranty expires, which totally sucks if you ask me, always cutting corners wherever they can.

I had another great visit with Kelly, I had her making cups of tea etc...lol I finally met her partner Richard and two beautiful sons Jake and Lewis, if and when she moves down here I'll probably ask Kelly to do our chores and Daz will get some more free time.

Well until next time, take care xxx

2007-04-07T15:02:00.000+01:00

On Sunday we booked a few days away starting on the Monday, Me, Darren, my girls and my mum enjoyed the break away even tho it was bitterly cold...we were wrapped up like Eskimos lol My powerchair kept loosing charge quickly, its suppose to range approx 22 miles but it wasn't even managing to make it 3 miles, daz called the company when we got home Thursday afternoon and they are going to collect it next week to see what the problem is.

Kelly my best friend is down for the weekend visiting her Brother as he recently moved back down this way, she will be visiting this afternoon sometime, so I'm really looking forward to seeing her again.......I really wished I hadn't left it so long before allowing her to visit me, but I was embarrassed by my speech, I know I shouldn't be as it isn't my fault but try telling my brain that lol but I'm over that hurdle now so bring it on hehehe

For the very first time in nearly 10 years me and Darren haven't been getting on too well recently, he wants to do his own thing and get out more and vice versa for me, the only problem is I need his help when out and about. Darren get time out but I dont so I'm thinking of employing someone to take me out and about alone. It wouldn't be a daily thing more like every fortnight for a day out.
I feel I need to do this because if not we will just continue to bicker at each others and we will grow apart, which neither of us wants...Daz doesn't want me to employ someone else but it's tough as I dont and cant get away from home life.
Family and friends have offered to take me out but Ive refused as I'm scared in case anything untoward happens, I suppose thats my next hurdle to over come...oh boy it gets better and better lol

Well until next time, take care xxxxxx

Birthday

2007-03-25T14:27:00.000+01:00

Yesterday 24th march I celebrated my 29th Birthday woohoo, the first thing I did when I woke up was to thank God. I don't plan on celebrating anymore birthdays so I shall stay 29 forever lol I mostly received money which suits me fine as I'm able to buy what I like.

Darren is out on his Motorbike, when he gets home depending if the weather stays fine were all off down to the beach...I haven't decided if I'm going to use my power chair or my manual chair, I love my van but like the car better lol after all a girls gotta be able to pose.

Progression: ummm thats a tough one as I haven't noticed any apart from my toes but that hasn't affected my daily routine nor does it bother me.

well Ive nothing more to add so until next time, take care.

Reunion

2007-03-18T14:46:00.000+01:00

Today was a emotional one because Kelly my best friend came to visit me, we haven't seen each other in 8-9 yrs but kept in contact via text messages and the internet. It was so good to meet up, she wanted to visit before but I couldn't handle it...Im just so glad I asked her around. She stopped approx 2 hours before heading back to Kent where she, her partner Richard and two sons Jake & Lewis live, we've known each other since primary school so about 18 yrs, Kelly is trying to get a house down my way which would be great as we'd be able to see each other more often now Ive broken the ice.

Here is a pic below of me and Kelly, so until next time, take care xxx

2007-03-13T15:09:00.000+01:00

Wow I cant believe how long it has been since I updated this blog, I haven't really been up to much nor have I got a lot to say regarding my progression.

The spring weather is finally here, I love it as I seem to be able to move better when its warm/hot...I did actually walk approx 14ft on my own the other day in my hallway, Darren stood behind me as when I fall its always backwards, my balance was all over and legs so stiff and ridged but I did it and it felt so good.
On Sunday Darren charged my power chair so me and the girls could go out for a walk, we got 5 minutes down the road when just about to cross over the road my chair starts bleeping and stops dead in the road, Charlie's checking to see if the free wheel function had kicked in but it hadnt...cars are going around me, eventually we turned it off and on and it starts to go again, only to stop several seconds later, so again we turned it off/on and away we go, we decided to turn back and head for home and by the time we got there the chair had stopped approx 13 times oh boy was I getting frustrated. Me and the girls were so looking forward to having a walk out, it was such a lovely spring day, oh well shit happens...were not sure if the problem is a loose wire/connection or just whether daz didn't push the charger in properly.

We purchased a new used BMW 328i to have a bit of fun in, Its fast and me and Daz love it...we've covered approx 2000-3000 miles since owning it just over 3 weeks lol The picture below is exactly like the car we have, same colour and everything but its not ours.

Well I'm not going to bore you anymore as I really have nothing else to say, so until next time, take care xxx

2007-01-30T14:06:00.000+01:00

We are all doing good.

Darren's Nan sadly passed away last week & his granddad passed away yesterday, its really sad but life goes on and I know the both of them wouldn't want us to be sad.

I haven't been up to much, been searching for a second car to have a bit of fun in as I cant pose in the van lol Ive seen a lovely car on ebay which is located approx 15 miles from, I'm still negotiating a price with the seller.

I had the hair-dresser visit my home, she dyed, cut & blow-dyed my hair straight, I was very impressed and love my new hair style...and best of all it only cost £25, she was doing my hair for 2.5 hrs, I wouldn't stand for 2.5 hrs cutting and dying someones hair for that price.

Well until next time here are a few photo's of my new style xxx

Hair cut

2007-01-22T11:43:00.000+01:00

My Mum cut my hair yesterday, she did the best she could...bless her lol

2007-01-21T15:06:00.000+01:00

I hope everyone of you have had a good start to the new year.

I'm feeling good, cant say Ive noticed any progression...probably a bit more weaker, I cant believe this coming June it will be seven yrs since I first really noticed symptoms of ALS/mnd, if I hadn't brought new shoes I probably wouldn't of noticed symptoms for a extra few months.

Me & Darren went and watched the new Rocky movie which was absolutely crap, the old rocky film are far better...I yawned continuously all the way through the movie as I forgot to take my baclofen medication which calms the excessive yawning fits.

I actually sold the new used scooter I brought to a lady on ebay, she brought it for her 94 yo mother who is apparently swimming in money, see the well to do folks also love a good bargain lol

All of my family are well, tho my mum had a bad asthma attack last weekend and ended up being rushed to hospital where she stopped breathing twice on the way, she is well now and back home. Cant say the same for Darren's family, his granddad is really poorly in hospital...needs a operation to remove the lower part of his leg as it is infected due to the lack of care with his diabetes...he has various other health problems and I dont think he is will to have the op to remove his leg.
Darren's Nan is also very Ill, dying of cancer, we never see her much...twice in 27 yrs as it is complicated, Darren's parents split up and went there separate ways so daz never saw his fathers side of the family...never the less she is still his Nan and he loves her.
Darren Father wants to get in touch with him but daz refuses after 27 yrs, bad things happened back then and he feels he cant let it be, so wont have any form of contact with his Father Bryan....lol I bet daz would want to know if Bryan was loaded, even if daz didn't I would lol Its a shame they cant get along, but Daz said he wouldn't know what to say to Bryan and that he is just a stranger and he wouldn't be able to get all the bad things outta his head which Bryan did when her was younger.

Well until next time, take care xxx

This and that

2006-12-31T13:22:00.000+01:00

We all had a great Christmas, Charlie & Beth were up at 4am Christmas day...Darren asked them to go back to bed as it was too early, I laid in bed and said you cant do that to them bless em, so up we got, I was already awake with excitement anyway lol the kids both loved the gifts they received...I was just so thankful I'm here to see it all and plan to see many more Xmas's.
Darren cooked a lovely Christmas lunch, tho we didn't get to spend Xmas day on our own as Darren's mum Pearl called at 7:35pm Xmas eve and said she would be coming for lunch after all.
Charlie loved her pink Nintendo ds lite game console, she didn't tell us she would like one for Xmas until it was too late...all the shops had sold out in pink & couldn't find one online anywhere apart from ebay which is where I finally brought one from...it cost over shop prices but I just had to get it for her, even my good friend Libby based in Scotland tried but with out any luck.
Bethany just loved all her presents but a few days later all we heard is "there's nothing to do" I was like what? you have all those gifts and you haven't nothing to do lol she liked her princess Alexa doll which she harped on & on for, and it didn't work properly so back to the shop it went, we asked if she'd like a replacement or a different toy, a different toy it was to be.

Ive got a stinking cold but the funny thing is I still feel great, the most annoying part is not being able to cough the phlegm up properly when laying down and its also hard when sitting up. I will definitely asked for a cough assist machine and bi-pap when I next go in hospital for a sleep study. Darren has been great, always asking whether I need cough medicine or nose spray, the girls have been great too...when ever they've heard me cough they rush in the room asking whether or not I need a drink, bless them.

Oh the scooter I brought is unfortunately know use to me, its in great condition and was worth every penny but I just cant use the hand controls as the levers are in font of the handles, plus when I tilted the handle bar back towards me It was hard to steer because you need to stretch arms out more to turn...Ive basically gotten so use to my current scooter and any other scooter is just suitable. In future I will try before I buy lol

Happy new year to you all

Until next time, take care xxx

Merry Christmas

2006-12-18T14:10:00.000+01:00

Wishing everyone a Jolly Merry Christmas & Happy New Year.

New scooter

2006-12-18T13:57:00.000+01:00

I brought a used mobility scooter off ebay last night because my one has had it, needs new battery's, fairing broke and struggle reaching the handle bars...my new scooter which should be with me by Friday has a adjustable handle bar, so hopefully no more struggling, I just hope I can manage OK with the controls. It will sure beat going 1 mph on the scooter I already have.

I'm fine, cant say Ive noticed any changes in my condition. I'm so looking forward to Christmas, I'm worse than my girls lol

Until next time, take care xxx

Bethany's Christmas school play

2006-12-14T17:47:00.000+01:00

This afternoon me and Darren watched the school Christmas play, it was wonderful and I throughly enjoyed watching it, of course the best part was seeing and hearing Beth (age 5) she was such a sweetie and made everyone laugh when she walked off the stage she couldn't resist poking her tongue out lol

Ive added some pics, must invest in a new camera....enjoy!
Beth is the 2nd child in from the right, a cowgirl dressed in a blue denim skirt, checked shirt, red neck piece and animal print waist coat. (click on pics to enlarge)

Im doing and feeling great.

Until next time take care xxx

2nd December

2006-12-02T11:45:00.000+01:00

We've nearly finished our Xmas shopping which is a great relief, just a few more gifts to buy and thats it...we turn our outdoor lights on tonight. My mum came over last Sunday and decorated my tree, it looks absolutely wonderful...thanks mum, I love you more than anything.

I will update again soon, I have to dash as my sweet darling daughter Bethany (age 5) has just sneaked in her sister Charlie's room and smeared nearly a full tub of hair wax in her hair...oh the joys of having kids lol

Take care, until next time xxx

This and that

2006-11-19T13:42:00.000+01:00

I collected my new afo's braces on Friday as my old ones had weakened allowing me to bend my foot in wards, I don't like the hingless set so they will end up in the back of the cupboard...Sam my nurse said try the hinged set on and test them while I go and heat and stretch your other set (as they were tight on my ankles) Darren put my braces and boots on, then we went for a little stroll down the corridor...I just kept walking and walking, daz was supporting me as always and kept saying "shall we turn back now?" I was on a roll lol, its weird how I can walk better in different environments plus the new braces helped. Most people presume I can do more than I claim as when they see me sitting I look "normal" but I cant do much because of arm/shoulder weakness and wasting.

Darren is putting up the outdoor xmas lights so they are ready to be turned on on Dec 1st, he is moaning and I think if he had his way the lights would be left up all year just so he doesn't have to pack them away.

Until next time, take care xxx

A bit of this and that.

2006-11-13T15:22:00.000+01:00

I brought some Xmas gifts online today, tho I cant mention what Ive brought as my darling daughter Charlie will read my blog and know what mummy Xmas has got lol

I'm bored as always so just listening to some music which is bringing back some very good memories and at the same time making me a tad upset because I was always singing and dancing but cant now due to als...I will always be singing & dancing inside. Ive embedded a song I'm fond of, just click the play button or the triangle in the middle.

Been very busy upgrading and adding new features to the ALS/MND chatroom which can be found by clicking the following link http://client1.sigmachat.com/sc.php?id=144320

Oops gotta cut this short as gotta collect girls from school.

Until next time, take care xxx

General

2006-11-11T13:52:00.000+01:00

I didn't get to take the girls trick or treating because it was too cold however Darren took them and they had a great time and collected loads of sweets.
We have been busy cancelling state benefits as Darren is now employed, I'm trying to get him a pay rise already and the local council are considering it...pay rise is for an extra £50 per week which would be very handy.
Ive noticed a few of my toes are becoming affected by ALS which suits me fine as if the ALS is attacking my toes its not attacking any other vital parts, well not that I'm aware of...why do we need to be able to move our toes anyway?
All of my affected body parts seem to be at the same level, give or take on the weakness on either side as everyone has one side stronger than the other anyway regardless whether you have ALS or not.
Ive been there done it taken supplements and vitamins to try and treat my ALS that is, but then I got thinking, any Tom, Dick or Harry can market such products even if they are not proven to work as you dont need FDA approval...so why on earth Pals take and spends a small fortune each month is beyond me.

Until next time, take care

Halloween

2006-10-31T13:19:00.000+01:00

Happy Halloween.

Well me, Bethany & Charlie will be out trick or treating tonight, hope the weather stays fine as they are so looking forward to it...I think this year I will take them a few block further as we usually just go door-to-door around our neighbourhood. I will try to be good and keep my temper under control but I swear if someone tells my girls to "F*ck off" this year there is going to be trouble, there isn't any need to cuss at them at all.

How could someone possibly swear at these two little darlings? (only me of course when they act like brats lol)

All is well with me and my family ;-)

Have a good day, take care xxx

26 October

2006-10-26T14:19:00.000+01:00

We got home yesterday about 3:15pm after dropping off a birthday gift for our nephew Josh, Darren pulled in the drive as usual and walks me into the house, Beth sat at the end of the hall taking her shoes off, when she got up she was walking funny and saying "OH Ive got the wiggly things in my legs" (pins & needles) and wobbled in the dinning room saying "oh oh" upon seeing and hearing her I got off in giggling mode and before I or Darren knew It I was on the floor, ouch!!! Hit the side of my head on the wooden floor, huge bump and a small cut...I'm OK and will live to see another day lol.

Today we have been clothes shopping, brought the girls some clothes and night wear and brought myself some more new clothes :-) Darren brought nothing as he doesn't like spending money on that sort of thing, he'd rather buy from a charity shop (tut tut) clothes outta stores are just as cheap but he wont have non of it lol.

I'm feeling great again, I think my last update I was a bit of a downer after missing my laptop, Im back up on a high again now and everything I wrote before has gone out of the window...thankfuly I adjust to the progression easily and dont dwell on it.

Have a good day, thanks for following my journey.

A bit of everything

2006-10-17T14:43:00.000+01:00

Ive been without my laptop for a week or so as the touch mouse failed to work, just received it back after being repaired (so happy) I didn't realise how much I had progressed since I stopped using my desktop PC nine months ago...it was a shock and a half, a few tears shed and a awful strain on my neck looking up at the desktop screen, I have laptop on my lap and look down at the screen and the keyboard was horrible as the keys stick out and are not flush like my laptop, so I had to resort to a on screen keyboard which did my head in, talk about slow. I'm back to typing with fingers again and I'm so happy, it did make me realise and have more respect for those who type slow in the ALS chatroom http://client1.sigmachat.com/sc.pl?id=144320 it must be so frustrating for them as I found it frustrating as the conversation moved so fast and you dont have time to keep up, will defiantly bare that in mind when I'm in the chatroom in future.

Good news, Ive now been given the thumbs up to employ Darren as my main live in carer after appealing 3 times...it has only taken 3.5 months of stress, tears and frustration lol. I'm so happy with the outcome as was dreading the privacy invasion among other things, the wheels are in motion and all should be sorted in a couple of weeks...I always told Darren I was the boss lol

Yesterday I was fitted for some new custom made leg braces (afo's) as mine have weakened and are too big due to weight loss/muscle wasting, this time I'm having two sets made, one set with hinges like I have now and a set without hinges, I go for fitting and collection in four weeks time.

A few days in the past week I noticed I was getting a bit breathless even doing minor tasks like using the on screen keyboard which was scary, tho yesterday and today the breathlessness hasn't happened...I was ready to book myself back into the breathing clinic.

Ive definitely noticed progression over the past week which is unusual for me as I usually progress kinda slow, dunno whether I noticed the decline more due to not having my laptop?

Until next time, take care.

Lyme's disease results

2006-10-06T13:01:00.000+01:00

I received my results this morning which were as I expected Negative, the same as last time....Im OK not gutted or on a downer, I would be lying if I said part of me wasn't hoping for a different out come. I so feel for my parents and Darren who are absolutely gutted to say the least, though I imagine they will soon get over it when they see it isn't bothering me and I'm still strong and determined as before.

Bethany my youngest was up all night with a sickness virus of some kind, she vomited more than 20 times and yet she never moans, cries or anything bless her.....so she is home today.

Charlie had two teeth pulled out on Wednesday and needs another two pulled out at the end of the month ready to have her fixed brace fitted in NOV...she tried so hard to be brave and not to cry, she received the injection which was fine then we had to wait in the waiting room for 5 mins for it to numb, thats when she broke down bless her......it was the first time she has had anything done like this.

Take care xxx

Marijuana

2006-10-01T13:28:00.000+01:00

I do not hide the fact I smoke marijuana (weed) everyday, I smoke it for pleasure and a part of me hopes some of the scientific claims researchers have made in which weed is suppose to be beneficial to those suffering from ALS/MND is true...I do feel very relaxed after a few joints, kinda peaceful feeling and of course if I'm relaxed my muscles are also, it also gives you a appetite and dries up saliva which is a great concern for ALS sufferers. I feel the government reasons for not legalising marijuana is a load of bollocks, if the truth be known the real reason is the government wouldn't make a profit from it as everyone would grow there own and not buy from a store, they allow alcohol and cigarettes which are known to cause illness and even death yet it doesn't stop them selling such products.

My current medication is: Baclofen for stiffness, Quinine for muscle cramps.

Have a good day xxx

Feeling great

2006-09-30T14:23:00.000+01:00

Darren showered me first thing this morning which I'm not keen on as the cold makes my muscles tense up causing aches, but I'm feeling great, seem to have a boost of energy and feel slightly stronger...must be having a good day so to speak.

In the UK we get free carers if were on a low income, which we are, you can have the state carers in or select to have "Direct payment" this is where the system give you money to employ your own carers, at present Darren gets an allowance (only £43) for caring for me over 35 hours a week, we are trying to get direct payment so I can employ him to be my full time 24/7 carer...the system doesn't allow you to pay someone who lives with you but you can employ a relative who also doesn't live with you, only under certain circumstances they will pay someone who lives under the same roof. I have now been refused twice to employ Darren, so yesterday I appealed yet again I wrote a straight talking letter and sent it via email and within a matter of minutes we get a call from my social worker Shelagh (she is great) she said the letter was great and it may swing the verdict our way this time :-) I mentioned a few facts in which if the state carers came in they wouldn't be able to meet my needs and so on, I could and should of mentioned them all but didn't, I will save them for next time if we get turned down again, we should get the decision within 3 weeks so fingers crossed.
I really dont know what the governments problem is with paying and employing carers who live under the same roof, if we get the direct payment for Darren we will have to come off of state benefits and Darren will of course have to pay tax and NI out of his wages thus saving the government money as we wouldn't be living on benefits and the tax they get from Darren.

We have nothing planned for the weekend, the girls are staying with their grandparents and will be home tomorrow, it gives us a break even if they do only stay over once a fortnight.

Have a good weekend

Routine Blood results

2006-09-28T10:09:00.000+01:00

Dr John called yesterday evening at 7:30 pm which surprised me as it was out of surgery hours, he said some results were a little low but nothing to worry about.....I knew that was going to be the case, see I could make it as a GP = General Prick lol

Have a good day, take care xxx

27 September 06

2006-09-27T10:31:00.000+01:00

Ive just got back from the Dr's 2nd attempt to have my ears syringed, left ear was successful but I have to go back again on Monday as the right ear is still blocked. If you recall when I had my blood taken to be tested for Lyme's disease my GP Dr John also took bloods for routine purposes, while the ear nurse was booking my next ear syringe appointment on her PC I asked her to check whether my bloods results were back and they was.....approx 8 results are abnormal, she obviously wouldn't discuss them with me and advised me to contact my Dr as the results hadn't been reported on, so I'm guessing that means my Dr hasn't had chance to look at them as of yet...Im on the case already, just emailed Dr John. I imagine the abnormal results are either just a bit lower or higher than whats suppose to be a normal range, well I hope thats the case...we will see.

Apart from my ear I am back to feeling my normal self, Darren and the girls are just fine and dandy.

Take care xxx

Ears

2006-09-22T11:33:00.000+01:00

I went to have my ears cleaned yesterday but the nurse was unable to do so because the wax was still hard and very black......she kept asking if I could hear OK which I can...she gave me ear drops and booked me an appointment for next Wednesday.

Ive not been feeling right since yesterday mid-day a weird icky feeling, fussy head, face aches...just dont feel like me, hope whatever it is soon passes. We got a call yesterday from the school to pick Charlie up because she was feeling sick and actually vomited when she got home, she OK now bless her, maybe Ive caught the same bug?

Take care xxxxx

More fishing

2006-09-20T13:29:00.000+01:00

Darren caught a decent size tench yesterday and caught a lovely tench this morning (click pics to enlarge them).

I'm feeling great apart from a few pains around my belly button which I think is wind.....looks like its bake beans for dinner lol

We took Charlie to the dentist last week, she has to have four teeth removed as she has too many and a fixed brace fitted which will need to stay in for one and half to two years...She is looking forward to having a brace as she can pick her own colour.

I will ask Darren to take some pics of my muscle wasted body parts and upload them to here.

Thanks for reading, take care xxx

Osteopath visit

2006-09-18T12:22:00.000+01:00

Ive Just got back from visiting the Osteopath which I think was a waste of time, he seems to think my butt pain is caused by muscle pain, my GP said it was pressure pain and both put it down to sitting down most of the......it seems they both haven't got a clue as it all started some 5 1/2 years ago when I was fully mobile and still walking unaided 3 yrs after the pain started. I hopefully persuaded the Osteopath to give my GP a call a to ask for a scan to be performed, he agreed to called him but whether I get a scan or not is a different story. No wonder the osteopath was rubbing his hands together as we were going out the door, i bet he thought "that was another quick few quid" lol (£43).

I had a good weekend, went shopping Sunday and brought loads of new clothes as I'm sick of looking like a minger.....might get my hair cut with blond highlights, you see I need to have my blonde back as its part of me being a dumb blonde lol oh you gotta laugh as its not good sitting around really sorry for yer self.

Ive noticed the most annoying twitch on my forehead, twitches dont bother me normally but this sucker has been there for 3 days so far, also noticed my right thumb is more affected as Its becoming a pain when I hold a cigarette lol Id rather chop the thumb off than quit smoking right now.

Take care xxx

Dr's visit

2006-09-14T12:05:00.000+01:00

This morning I visited my GP at the local surgery, his first comment was "you look extremely well, you look good" he then took blood to see if I may have Lyme's disease at my request, I know it will be negative like the previous test but no harm in trying or hoping otherwise... he also took more bloods while he was at it just for routine purposes. I also mentioned I have severe pain to the left buttock when pressure is applied to the area which has been there since I gave birth to Bethany, maybe the two are linked...he referred me to the local physio department to see whether they think its worth pursuing further tests and also suggested I see a Osteopath. Ive booked a appointment to see a osteopath this coming Monday, had to pay privately as the NHS doesn't cover it. He suggested I have my ears cleaned out as they are full of wax after I complained the right ear felt tender.
What does annoy me is the fact nearly all professionals presume that I think certain illnesses or symptoms are related to ALS/MND, 99.9% of the time they say "I dont think it has anything to do with your condition".....did I say it did? NO grrrr.

I will update my blog with tests results etc once I have received them, have a good day and thank you for following my journey.

Fishing

2006-09-13T14:47:00.000+01:00

Me and Darren went fishing this morning for approx four hours....Darren caught a lovely Tench pictured below, Ive never seen a biggish fish caught before so was pretty amazed lol I sit up on the bank in my deckchair keeping a eye on the float. Its so peaceful and relaxing, the only problem is about half a mile away is a parachute centre and now and then you will hear wohoo as as a parachuter jumps from the plane lol obviously enjoying the experience.

Shopping

2006-09-11T09:42:00.000+01:00

Well the girls are at school, Darren is finishing of a project of his and I'm stuck bored on the PC but thankfully my mother just called to see if I wanna ride out to the local shops....not my ideal thing but anything is better then looking over and over the same websites.
Darren's Mum just got back from a week in Salou she said it was very wheelchair friendly and brought post cards back so we could see for ourselves, were thinking of booking up to go there next year. First we need to get Beth a passport, Charlie already has hers and is going to Salou next month (Oct) for five days with her grandparents. I'm just worried about the whole prospect of going on holiday aboard as never done it, been to US for treatment but not the same as a holiday...Think for the first time we will ask Darren's mum (Pearl) to accompany us, I'm sure she wouldn't refuse lol. Take care xxxxxxxx

Cinema

2006-09-09T14:23:00.000+01:00

Me, Darren and the girls went to watch "Over the edge" today at the cinema, film was great fun and was Bethany's first time...she made us laugh 5 minutes into the film/cartoon by saying "this isn't like Cbeebies"(kids TV channel) lol bless her, she behaved very well even tho she was bored after the first 20 mins and was uncomfortable as the seat kept flipping up, she wasn't heaver enough. My eldest daughter Charlie and I would like to go and watch "Barnyard" we viewed the trailer and it seemed very funny, so plan to go and watch it when its been released.
After we came out of the cinema we went to McDonald's, boy the food is rank (YUK) after I ate my chicken burger and fries all I wanted to do is sleep...it felt as though my battery's ran flat in a instant, never again will I eat that shit.
Apart from the tired feeling I have at the moment of writing this, I feel great.
Charlie & Bethany

ALS/MND Chatroom

2006-09-03T12:55:00.000+01:00

Everyone is welcome to visit and meet many new friends in the live chatoom here > http://client1.sigmachat.com/sc.pl?id=144320 you must have Java installed.

September 1st

2006-09-01T14:31:00.000+01:00

The girls are ready to go back to school this coming Tuesday and we are so looking forward to the peace and quiet lol. Just trying to think what we have been up to ummm gee mind has totally blanked, oh we visited the local zoo if thats what you can call it....been to the beach several times which was great and visited a place called Skegness which has a nice beach and loads of things to do for the kids........I think someone should design a fun fair for wheelchair users especially for kids as why should they be left out.
I tried upping my baclofen but didn't seem to make any difference so now I add on the odd occasion Diazepam which I didn't realise was also for spasm/stiffness, wish it didn't have the doped up feeling you get with it. I havent noticed any progression so thats a bonus.

This is my life

2006-08-08T16:13:00.000+01:00

Me with girls (2004 I think)

My powerchair

2006-08-06T16:16:00.000+01:00

Otto Bock B600 6 mph powerchair with tilt seat 'n' rise features.

My wheelchair accessible van

2006-08-06T16:10:00.000+01:00

Toyota Hiace 2.4D powerbus with rear acess fold down ramp & electric winch.

2006

2006-08-06T16:06:00.000+01:00

1 January 2006
Our Christmas went as planned, the girls enjoyed it which is the main thing. I’ve been feeling great the past month, cant say I’ve noticed any progression, my gp is in the process of referring me to see a Lyme’s disease specialist, I know it’s a stab In the dark but I cant & wont sit back without a fight. I have been awarded a grant of £14000 for home improvements, widening of doors etc…that I’m very grateful for, as I know many pals in UK have really struggled to get what they need and have to fight for every little thing. When the warmer weather gets here we plan to travel & meet up with fellow pal Rob and his wife Sharon in Nottingham, I’m looking forward to it though not looking forward to the crying out burst which I know will happen when we meet. Well I hope 2006 brings better providence to pals all over the world. HAPPY NEW YEAR TO YOU & YOURS.

1 February 2006
Works have been started to the house; almost nearly complete apart from the new front porch, which will have an electric door opener on it, more self-independence. Some of the possum products have been installed, and work fine, if possum is good enough for Hawkings it good enough for me lol. I’ve had and still got a chest infection; smoking doesn’t help so I intend to get some patches, just hope I have enough will power to quit. We lost our dear friend Sarah aka duckie to mnd on Wed Jan 04, 2006, Sarah was one of a kind and nobody could ever replace her witty sense of humour, I will miss you Sarah. It wasn’t meant to be your time but God saw you were getting tired, and a cure was not to be. So he put his arms around you and whispered, "Come with me." RIP my friend xxx.

1st March 2006
Building work complete and looks great, even if I do say so myself lol, I’ve decided against the electric door opener, way too big and bulky for my liking, may change my mind down the road. Its been a stressful month, things aren’t going as planned, I had the dining room ceiling re-artexed & it made condensation in the conservatory which dripped and messed up my leather suite grrr! I ordered a new carpet which was supposed to be delivered & fitted within two weeks, 3 weeks later, Darren called the company, he got told the 14th march, then they called yesterday to say the carpet has been discontinued, what a effing liberty. I have started to take two new supplements (well new to me) African potato & Sutherlandia as I haven’t tried anything of late, I’d been taking them daily for 2 weeks and they made me feel like shit, neck got weaker, didn’t feel like me, fussy head blah blah blah…. Since stopping them, I feel great, neck has gone back to the state it was before I started the supplements, which is a great relief..

1st April
Not a lot has really happened in regards to me & MND this past month, I have noticed certain foods are getting lodged in the two small pockets within the back of my throat, though it isn’t happening all of the time, while I’m on the subject of swallowing, my god does my throat make some weird sounds when I sometime swallow. My good friend Rob (fellow pal) has a rather tough time lately, he received a trachea and is now back home recovering, to follow Robs story Please go to the links page on this site.

1st May
I now have my whole front garden block paved for parking, also had my closomat toilet raised 2 inches, I now sit on the loo like a little girl with my legs dangling as I can hardly reach the floor. I had wheelchair services visit me at home, the guy sat down & his first words were "coffee, two sugars, please!" lol well anyways, he is going to try and get me a invacare storm3, instead of the spectra plus. When Darren called wheelchair services department to inquire about a power chair, I was amazed when they said "yes, Jeannie is already on the waiting list" blimey, they used their initiative for once.Some of the small muscles in my hands have wasted more, since I wrote last months update the food getting lodged in my throat hasn’t happened, which is a good thing. Its weird really as my als/mnd doesn’t really bother me, yes I get frustrated at times but who doesn’t? and due to "not being bothered" I cant be bothered to stick to a regime let alone a new regime, I suppose its all down to will power, which I haven't got, but what I have got is a loving family & courage to fight this disease.

1st June
I apologise for late update, I did update but for some reason it never got posted. I now have my new power wheelchair which is absolutely great, I had a choice between Invacare storm3, which I initially was opting for or a Otto Block B600, I went for the B600, it has electric tilt and rise, lights etc….I was not suppose to have such a chair because of funding, they normally give you a Invacare spectra plus. My wheelchair services guy 'Chris' said the funding committee declined funding for such a chair on three occasions, but he was great and fought for the chair that I wanted, he brought up the fact that I'm saving the NHS money by not taking Rilutec lol we won in the end. (I will upload some photo's of chair soon)Well my parents do not like my "not bothered" attitude and have been pestering me, so I have again been searching for alternative treatments, I have found a herb called Samento which I'm willing to give ago, far from getting my hopes up about the so-called curing claims as stated on some internet site, cure for Lyme's not MND/ALS, though apparently it's not just a benefit to Lyme's disease patients but for disease. I've yet to order the Samento though plan on ordering it today, will keep you updated.

August
I went for a sleep study on Monday 24th July, my FVC sitting up has dropped 15% to 56% but lying flat its 68% go figure lol as suppose to be lower when lying down, the dr's said it was unusual but aren't willing to find out why, totally typical of them, my blood gases were all normal. I feel ive progressed all over but more noticeably in my arms, shoulders and wrists, which to some degree has made some things more awkward to do. As a family we have been to two theme parks and visited Sandringham house, one of the queens estates (the lucky bitch), which has been great for all of us, not so sure about Darren though as he likes motorbikes and that sort of stuff, we plan to start going to the movies every month but haven't gotten round to doing that yet. I've brought a wheelchair accessible van Toyota Hi-ace power bus which is absolutely great, it has a rear entrance ramp and electric winch for manual wheelchairs, the only problem we've got to over come is trying to figure out how to get me in the passenger seat as its way to high for me to get on, at present Darren has to lift me on the seat and it isn't doing his back any good, were going to try some small steps to if that works, I really do not want to be a back seat passenger before my time, Darren would love for me to be in the back as im a real nervous passenger (well I am when Darren is driving lol) all he hears every two minutes is me saying " be careful, they are breaking in front, watch him/her, slow down speed camera" I think you’ve got the gist of it lol I even try breaking by stomping my foot down, Darren says" Thank god you don’t have a break pedal your side". Ive uploaded some photos of my powerchair which can be seen on the main page, Until next time, take care and god bless xxx

Copyright© Jean Harrison 2004-2006

2005

2006-08-06T15:58:00.000+01:00

January 2005
Happy New Year to all.
Our Christmas was a bit of a disaster, we invited Darren's parents over for Xmas day lunch.
A couple of days before Xmas day Darren starts to get a head ache, then it turns into a migraine, Xmas eve Darren puts the presents out under the tree, only to be rushing back and forth to the bath room throwing up.
Xmas day comes; Darren can barely get out of bed due to the severity of his migraine and other symptoms, he manages to get up at 5:30am to watch the kids unwrap the presents. Then straight back to bed again, to cut long story short Darren's mum Pearl turns up to find she has to cook her own dinner. David, Darren's step dad was great; he kept the girl's busy playing with them.
After lunch we have to call the DR, Darren is crying in agony, a paramedic turns up, Darren is treated for suspected meningitis, then the ambulance crew arrive to rush him to hospital.It turned out he didn't have meningitis, the cause unknown. Now thankfully we are all back to normal. The girls had I had a good xmas even if Darren didnt.
Darren did the spring cleaning today, and took all the xmas lights and deco's down, it feel's and look's great. I have gotten weaker in my shoulder's, they have probably been getting weaker slowly over the month's I didnt noticed any progression, my arms are still strong when pushing & pulling but not lifting up. I am starting to get realy pissed of with the severe clonus in my feet, at times I say to Darren "just chop the effers off".I have probably progressed in other areas that I have just not noticed or use alot.
Next ONO visit is on the 12th Jan, looking forward to it because I want to see what my fvc is, I have a funny feeling it may be lower. On the 24th Jan it will of been 2 years since I went for HUCB treatment, and Bethany will soon be 4 in Feb; time sure does fly.
I shall leave it there and finish of by saying my thought's and prayers are with the earthquake victims, at this sad and devastating time. Back to top

10 January 2005
Today Darren called the ONO trial team to verify our next appointment date, which I thought was on the 12th; it turned out to be the 17th. Though now this date has been moved back to the 20th of Jan, because we should know this month the results of the trial (which I can see coming back as NO GOOD!). I will be very suprised and shocked if ONO pharm says it helps ALS, I still progress at my normal level/rate.
I do really notice the new weakness in my shoulders now, in fact this is maybe the first time in my als life (4 1/2 years) that I got/am scared. It seems to of hit me like a bolt out of the blue, I am wondering if it was all the stress/worry over Darren at xmas what started it of. When Darren was ill at xmas I could'nt walk let alone hardly stand to transfer, because I was nervous the clonus and other symptoms went hyper. Oh well I will just have to learn to live with it. Back to top

1 Febuary 2005
I have been feeling good this past month, the clonus has calmed down a bit making walking more easier, I cant say I have noticed any progression it seems I only can tell over a period of several months, which is fine by me. Darren’s step dad David had pc problems which I did eventually got sorted out, I was glad his pc did go down in a way as the pc is up stairs, yup you guessed it I can still manage to walk up stairs which I didn’t think I could know longer do because I have not attempted stairs in over a year, I am a bit doggy when I get to the top as there is no hand rail but Darren is their to help, coming down in somewhat different I come down on my arse lol, (when there is a will there is a way).
The ONO trial has been discontinued as it isn’t beneficial, I am now taking part in a home self trial using Amoxycillin antibiotics 500mg 3 x daily which I shall trial for 6 months plus, I have to be careful as I might become resistant to them making it hard to treat any other infection I may get. I drink 1 probiotics everyday to help prevent thrush, which is a common side effect; fingers crossed no side effects noticed yet.I brought myself a new exercise bike, I try to do between 2-4 miles which takes me about 12-24 minutes everyday, though everyday hasn’t been successful as I cant be bothered to get of my arse. I suppose when I get into a routine it will be ok, I also brought a arm pulley to help with movement though this has been the same as the exercise bike I just cant be bothered.I have been upset the past month as we lost two good friends from the als chatroom, Carrie & Meggie who was two great ladies may they now find peace & comfort.
Picture of me on bike
Picture of me using pulley Back to top

1 March 2005
Well well well, I really don’t know what to write about this month, as I’ve done nothing. I haven’t been on my excise bike as I generally just cant be bothered, I’m still taking the Amoxicillin cant say I have noticed any difference as it’s hard to determine because I cant tell if I’ve progressed for several months, no side affects anyways. I have spoken to my neuro about the possibility of having a Baclofen pump fitted, I asked for him to refer me to a specialist but because he has not seen me for some two years he doesn’t know what my clinical status is, so now I have to book a appointment to see the mnd nurse. The clonus in my feet change like the wind, one day it’s not so bad then another day I can barley walk. I seem to adapt well to my progression making it harder for me to fight the disease. I brought a pulse oximeter my spo2 level is 96-98%.Back to top

24 March 2005
Today is my birthday 27 yrs old(happy bday to me). A lot has happened this month but the worse is to come. Back in December I went to see a gynecologist because of on going problems within my womb area ( I finally got referred by my GP after 4 years of pestering him ) the gyne Dr referred me for an ultra sound scan of the Uterus which I had on March 10th (after kicking up a fuss) I was NOT surprised when the Dr said "yes there is something wrong with your Uterus, It doesn't seem to look malignant but it will need to be investigated further". Oh boy, but I was very surprised to hear the word Malignant, Today I got an appointment to be admitted to hospital on Tues 29th @ 8am for what they call a minor operation I should be home on the same day, They intend to put a camera down me to have a look at the lump and go from there, I dont know yet whether the dr is going to remove lump at same time as they do the camera. When the scan Dr was looking at the scan monitor he uttered the words "oh god" which made me even more nervous, Darren mentioned this to the gyne Dr and he said it's because we have never seen anything like this before, trust me to be difficult again. I will update again on the 1st april if all goes well.Back to top

1 April 2005
All went well on the 29th the Dr removed the 1 inch long lump I will know what the lump is in about a week. The Dr said it didn't seem to appear cancerous. The great thing was coming back around from the anesthetic it felt so good every muscle in my body was relaxed I felt "normal" for 5 minutes until I moved my arm then bang come back to reality Jeannie remember you have still got MND, but it felt so good while it lasted. I dont know whether or not if I have progressed but Im feeling great, I have started wearing my afo's which make walking/life much more easier, Darren keeps saying " I told you to start wearing your afo's over a year ago" well maybe I should of took notice. Nothing more to add so im going out in the garden as it's such a great day sunshining.Thank you all again for the best wishes, thoughts and prayers xxxxxxxxx Back to top

1 May 2005
I went to a new local MND clinic on Mon 14th April and saw a neuro (first neuro in 2 yrs) about the possibility of me having a baclofen pump fitted he said he would discuss it with his colleague in London as the procedure would be performed at a London hosp, In the mean while to up my current dose of 90mg baclofen to 120 mg and higher if no side affects was noticed or benefits, he was surprised at how strong my legs was. Also he wants to repeat a MRI scan & EMG which I'm not looking forward to ouch!! He said I am border line between PLS and als I think he was just trying to make me feel better, I seem to have more symptoms that relate to PLS than als but i have the muscle wasting for als oh well the joys of life with als. I started 120g of baclofen and felt like shit so dropped back down to 90mg, I shall up the dose slowly to see how I get on. The neuro also advised me to try a different antibiotic so shall talk to my gp about that, In the mean while I have stopped taking the amoxicillin.I can tell that I generally gotten weaker all over my shoulders are weakest of all, I really struggle to bring cup up to my mouth same goes with eating tho i can still do it.Back to top

1 June 2005
I received a letter from my neuro Dr Alan, it seems that his colleague in London doesn’t think a Baclofen pump would be beneficial for me; it is to be discussed further at the next appointment. I can’t really tell if my shoulders are any weaker but I can see me needing to be fed by the end of the year. My walking has deteriorated a lot I can only walk a few steps holding onto something with out wearing my afo’s, I tend to always walk on tip toe and take “baby steps” even when wearing my afo’s, I am going to ask again about having botox injected into my calves again to see if that helps some. I can see and feel muscle wasting in the top front part of my legs; feels like someone has scooped muscle out using an ice cream scoop Yuk! I have been spending more time out in the garden, which feels great I’m glad the warmer weather is coming. A good friend/pal Pete aka BluePete is in hospital due to pneumonia infection he got a tracheotomy & vent after a long awaited fight for a trachea, he seems to be improving which is great news my thought & prayers continue for him.Back to top

1 July 2005
I brought a new electric wheelchair Invacare storm 3, Picture of my wheelchair, I could of obtained a free electric wheelchair from the NHS but they look flimsy and unsafe for my needs. I don’t need to use the wheelchair full time but brought it on the spare of the moment, I have used it twice to go shopping at the local super market, I feel 100% safer using the chair than I do my scooter. I have mentioned this before, but will just give a brief outline to those who may of missed it. I attended a new mnd clinic near me a few months ago, meeting with my new neuro (first neuro I’ve seen in 3 years) he asked to perform an EMG & MRI on me. The MRI I had some 4 years ago was only performed on my upper spine (neck) and brain ( yes I do have a brain :lol: ), which is normal practise?. I had another MRI scan late yesterday afternoon, only this time they did a full spinal & brain scan. I shall update on this once I receive the results. I have been dwelling on the fact that this dr guy who said he doesn’t think the Baclofen pump will be any good for me, how the eff would he know if he hasn’t even seem me or performed the usual test to see if I would be a candidate. "To determine if a patient is a candidate for the implanted device, a single trial dose of Baclofen is administered directly into the spinal space. With the assistance of a physical therapist, changes in the patient’s muscle tone or spasm severity are then monitored for four to six hours, which is the approximate duration of the test dose’s effect". I shall certainly be discussing this at the next meeting. I have not noticed any progression, but that doesn’t mean that I have not progressed. I mention Pete aka BluePete last month, Pete is now at home with his Ventilator (well done Pete) he has given many pals HOPE in the UK who want to go down the same path, my thoughts and prayers continue.Back to top

1 August 2005
Not much has happened this past month, went back to the mnd clinic which didn’t go down to well re: Baclofen pump, for petes sake I only what to try the pump, I’m not expecting miracles. Apparently the dr only use the pump for bed bound patients, non-being pals (what’s the point in that? Err), I ended up getting upset and walked out, My neuro Dr Allen claims he has done nothing but help me HA HA HE HE, Dr Allen wrote one poxy letter, yes one letter to the dr whom performs the pump procedure, you would think he gave me the world. It’s now up to me to make the first move to contact him again, but little does Dr Allen know I’m a very stubborn person. Had a sleep study performed and was told all was good, I attend again in one years time, while I was there I tried out the cough assist machine and was very impressed, though I don’t need one just yet. I don’t whether or not if I’ve progressed but will soon know, once I do a certain activity.Back to top

1 September 2005
My OT came to visit and hopefully we will be awarded a grant from social services for home improvements to aide my disability, they intend to widen all door’s and take the bath and shower cubical out to make it a wet room also going to have a body dryer fitted. Some of the improvements are going to be more difficult than others to adapt, the font door, Charlie’s bedroom door and kitchen door will be more of a obstacle as there is no room either side of the doors to widen them, so some walls will have to be knocked down and replaced. I have gotten weaker in all parts, I now sometimes use a straw to drink cold drinks, you may think it’s bizarre as to why I’m not using the straw with hot drinks, reason is it don’t taste the same so I have decided that when I can no longer lift a cup at all I will not drink hot stuff.Back to top

1 October 2005
I had a environmental control guy out to the house trying to persuade me to have his radio wave system fitted, but he ended up batting for the other side (not intentionally) and ended up talking us through the possum infer-red system, which was more high tech than the radio wave. He was such a great caring guy, although he sold us the possum system for a company he was up against, he said “ it’s what’s ever best for your needs at the end of the day,” he truly was a great guy, I felt awful as we didn’t have his product. The major issue for me is the lights as I can barely reach up to turn them on/off, they are also going to do the TV & phone for the future. I had my 3rd EMG test on the 13th September which showed some reinnervation (meaning: Restoration of nerve control of a paralysed muscle or organ by means of the regrowth of nerve fibers, either spontaneously or after anastomosis.) in both upper & lower limbs, I’m still waiting for Dr Alien opps I meant Allen’s opinion on the test. We went to sea side you would of laughed if you had been there, talk about stuck in the mud I got stuck in the sand the tide had not long gone out making the sand very firm, I thought great I can get on the beach in my power chair, at first it was fine me & my 4 yrs old Beth raced down to the sea front (haven't been able to get on sand for 4 yrs) we got back to the sand edge to go up the ramp and yes u guessed it, the sun had dried up the sand so it was soft, Darren my partner couldn't budge the chair, luckily a young fit French guy came to my rescue and he and Darren pulled me out, happy ending lol. Me & Darren also went out for a meal to a quiet pub along side a river, it was great we had the whole room to ourselves throughout the meal, I didn’t feel conscious of folks staring at me as there was no one in the room until we finished then a couple sat down to eat.Back to top

1 November 2005
Darren & me took the girls around the block trick and treating last night it was actually quite fun, brought back some good memories. The next outing will be on Saturday 5th to watch a fire works display; the girls will enjoy it as they do every year. I have since compared my previous emg 2002 to 2005, I can clearly see that I had signs of denervation (fibrillation) in my left tibialis anterior muscle, however in 2005 no signs of denervation was detected in that particular muscle. I received a letter from my neuro stating the results do show I have a problem with the motor neurones (fibs) and they was progressing rather slow also that there was no change compared to 2002, he didn't mention the improvements, he either over looked the result or didn’t think it was that significant enough to mention, which was a bit dishearting not only for myself. I’ve had a chest infection & cold which has not quite gone, my O2 levels was low 92% during the day, at night while sleeping it was well below 80% at present back up to 96-97%. Although I have had an infection I’ve been feeling extremely good, can’t say I’ve noticed any deterioration in my condition.Back to top

1st December 2005
Woke up this morning feeling a bit down, I seem to get a anxious feeling come over me now & then, I took a diazepam tablet and feel much better now at the time of writing this. I have noticed my forearms, legs and posture seem weaker, though it hasn’t affected my daily routines. I have my OT & Possum coming today at 12:30 to discuss environmental control system, I’m going to ask the possum guy about communications as The New Say-it! SAM SM1 looks good, whether they will fund one is a different matter, but it’s worth asking. well as y'all know I had a lump (polyp) removed from my uterus back in march after having a ultra sound scan, I was meant to have a follow up scan within 3 months after op. My gynaecologist thought the lump he removed was that which showed up on the scan and referred me to a bladder specialist as he felt he could know longer help. I met with the bladder specialist a few months ago who suggested I have a camera inserted into my bladder under general anaesthetic (which I go in hospital for tomorrow 23rd). I mentioned to him I still hadn't received a appointment for the follow up scan, he wrote to my gyne Dr about the scan which I received 2-3 weeks ago ( 5 months late ) To cut a very long story short, what ever showed up on the scan back in march is still there , a different scan Dr performed the scan and she too said she had never seen anything like it before. All went well I apparently do have a infection on the trigone of my bladder, cephalexin antibiotics has been prescribed for 3 months along with two other drugs tolterodine & duloxetine for bladder control? Received a letter from gyne Dr stating I have an area of possible calcification on the uterus, I wait & see what he suggests. Nearly all ready for Christmas, we have the decorations up already.
Happy Christmas to you all.
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Until next time later,
Copyright© Jean Harrison 2004-2006

2004 & a bit about me

2006-08-06T15:26:00.000+01:00

A bit about me
I live with my partner Darren and two daughter's Charlie aged 9, Bethany aged 3. I started showing signs of Motor neuron disease (MND) also known as Amyotrophic lateral sclerosis (ALS) in June 2000, I was pregnant with Bethany at the time and thought that may of been the problem.Symptoms started in my left foot with stiffness and progressed slowly to my legs, hands, and speech. I got diagnosed in July 2001.I use a scooter out doors, I manage somehow to walk in doors (holding onto the furnishing) Breathing and eating are fine.As of to date 10 April 2004 my speech is slurd, arms weak, weakness in my neck, walking hard due to server stiffness. I have visible muscle wasting in my hands, forearm, shoulders, tongue.
I have tried Stem cell treatment HUCB (human umbilical cord blood), I had good effects that lasted five to six months, my arms regained strength and I was able to walk around unaided.
My Journey with stem cell 1
My Journey with stem cell 2
I have also tried many supplements, which showed no effects what so ever.

22 March 2004
Today I went for my two monthly check up at Kings college London. (I'm participating in a study called ONO trial).All was well arms are slightly weaker also lost 4lb in weight (could been down to a sickness virus I had at the beginning of month) My FVC was 83%, tho I did get 95% when everyone was out of the room they could not count it as there has to be someone there present from the trials team. Two months ago highest fvc was 72%.

1 April 2004
I have started a new regime last Monday hopefully I will stick to it this time, I brought new supplements: Aloe Vera, Vit E, Milk thistle, Multi vitamins and minerals, Garlic, Vit C, Fish oils, B complex, Magnesium, Calcium, Zinc.My new diet consists of only fresh Vegetables, fruit, chicken all are organic. No fried foods, no dairy (I do have milk in coffee) no wheat, no sugar. I will see how things go I don't expect to see anything for at least 5/6 months. I have a lawyer coming to visit me on the 16 April, to see whether I can get some sort of untested treatment Im looking towards Gene therapy and stem cell. The same lawyer who fraught the Johnathan Simms case a young man with vCJD, his father Don battled the high Court to get Johnathan a untested drug.( Johnathan is doing well still alive 16 months after treatment than predicted). It is part of the right to live campaign that a small group of pwMND ( people with motor neuron disease) are involved in.

2 May 2004
I have not noticed much change which is a good thing, My next ONO trial visit is on the 18th May so I will update again around that time.Thing's went Ok with the Lawyer, he said it wont be like the same case as Jonathan Simm's, as I’m fully able to express what I would like. Now we have to get a willing Doctor to support me and speak to the researchers who are involved with the AAV IFG-1 (gene therapy). If I can get this treatment it should be funded by the NHS if they wont pay, then David will pursue court action against the NHS. Time will tell at least I have some more hope to cling onto; I will update more on this when I have heard from David Body (lawyer).

2 June 2004
I had my ONO trial check up, all went well my FVC was at 91% (not bad for a smoker)the dr checked back through my records and said "my muscle and FRS score/test are nearly the same as when I started the trial 10 months ago" so I was pleased to hear that. I lost 1lb in weight. I have noticed that my fingers have gotten weaker when typing, my legs seem stiffer and clonus is worse. So more help is needed when I walk. In the mean time I have put my bungalow up for sale (People say Im mad)as it's abdapted to my needs. For me life dose not end just because I have ALS, we plan to buy a large house or bungalow with a very large garden. so I can whizz around on my scooter. Not much to update on the lawyer he has written to several people including the team working on the AAV IFG-1 therapy. He awaits for a reply.

14 July 2004
I had my ono trial visit on July 12th, all was well my fvc was 78%. I have noticed I have become weaker in my forearm's, neck, and in my posture. Legs still remain very stiff, which soon I shall be looking for a power wheelchair. I thought that the 12th was my last ONO trial visit then I got the active drug, wrong I now have to go into the open label trial if I want the active drug for another year. I was really pissed off because no one told me this at the beginning of the trial.I plan to have my Placebo/actived drug analysed to see what one I was taking, If I was on the active drug I will not take part in the open label.I have taken my house of the market, as I couldn’t find anything that met what we needed.The diet I started has not been successful as I keep cheating and eat things I shouldn’t. I still remain to eat organic foods I will also stop my vitamins when they run out, as I still feel no benefit from taking them.I still remain very positive though it is very hard at times, Also last week I had another sleep study performed and there was no change from when I went last time (six months ago) I did ask the dr whether I can have a Trach and vent, when the time comes and was surprised he said yes, after we go down other alternative routes first like BiPAP etc. I was pleased about that.
No update from lawyer which is a bit disappointing, though I wasn’t expecting miracles.

9 August 2004
I started on the active ONO drug on 19th July; so far I have had no side effects nor noticed any change. I went to my ONO trial visit today all went well FVC was 82%, all they do now is bloods, ECG, urine sample, weight. I asked for my fvc to be taken for my own piece of mind.I have not noticed any further progression the past month which is a good thing, the clonus in my legs have slightly lessened which has made my walking easer, I think this is because of the baclofen I am taking has actually got the active baclofen in it. I have noticed on many occasions that some of the baclofen I take does not taste of anything at all and others taste awful, the baclofen I have been taking the last three weeks does indeed taste horrible.I am going to write to the manufactures and tell them about it, I will also get them analysed along with my placebo/active drug. Me, Darren and the girls went to the sea side on Sunday which was a great day out, it was very hot but as soon as we hit the beach there was a lovely breeze. I have been smoking Marijuana for some time now, I cant say that it help's with my MND but it does relax me (a bit to much at time's)I always forget to mention that I smoke it when I update.These are some of the thing's I can still do on my own, bathe wash, toilet, eat/drink, make coffe/tea, wash up, laundry, zips, type, partly dress myself, shout, talk, play with kids, get up, brush teeth, etc.... which I dont think is to bad after just over 4 years of living with MND.I have still not heard from the lawyer so I have given up on him, which is a great shame.

1 September 2004
I have still not noticed any progression, which is a good thing; I hope I don’t speak to soon. The only thing I have noticed over the past couple of days is I have been getting twitches in my ribs muscles.I brought a new super king size bed which is absolutely great it's easier to turn over in bed, the only problem is that now when I sit on the edge of it my feet don’t touch the floor lol but I can live with that.My next ONO trial visit is in a couple of weeks, I’m not looking forward to the travel 192 mile round trip.I'm still not happy with my progression rate, so I am going to ask my dr to prescribe me some 500mg Amoxicillin antibiotics to self-trial, over a six-month period. I cant and won’t sit back doing nothing Im not that sort of person.I wrote to the people who manifacture the baclofen I take, they said they would get them tested if I send them back.Do these ppl think im stupid ?? of course they would say the baclofen was ok after testing it. lol
I was very pleased with myself for being able to get on Darrens motor bike on the 26/08/04 click to veiw photo even tho he lifted me on :-)))
I would like to take the chance to thank everyone who has visited my site and thank those who have signed in my guest book so far, THANK YOU.

15 September 2005
As many of you are aware there is a new untested treatment called 'olfactory ensheathing cell' (OEC) being performed in Beijing china by Dr Huang. I am booked to receive this treatment early next spring April 3rd 2005, The treatment involves brain and spinal cord surgery the cells will be injected in my brain and spinal cord. I am scared shitless it is a very daunting thought to think of being drilled in the head.The treatment does not come cheap $22000 - $24000, I hate when money is involved which prevents other people being able to afford such treatment. I still need to raise around £5000-£8000,If Anyone who feels able to help can send donations to the "Jean Harrison Medical Fund" at the Nationwide Building Society, account number 1435-703618588.I feel this is something I have to do, at least I can say I have fought this disease and not just sat back letting it rule my life. In a way I feel I am helping other people with this disease by being a human guinea pig. ONO trial visit went well FVC was 76%. Please email Steve Byer for more info on OEC treatment Email Steve Byer.

1 October 2004.
I have not noticed any noticeable progression though that doesn’t mean I am not progressing. An article about OEC and me was in a national newspaper “The Sun” some dozy freelance journalist stole the story from my local paper; I have also been on BBC look East news and radio station, which was quiet fun. I really must invest in a walker as I feel a power chair is not needed as of yet, I don’t want to make the same mistake as I did with my scooter and buy a power chair before I really need to. There has been lots of publicity on the news and in papers about motor neuron disease and human cloning this week; I have never seen so much publicity on MND in the UK besides Diane Pretty. It’s been a few months since I stopped all of my supplements I think they are a waste of time and money I have not noticed any differences what so ever. Recently I have met some new pals online who are great I chat with them mostly on msn Sarah, Alexandra (father has als) & Esther. My next ONO trial visit isn’t until November I have not noticed any side effects since starting on the active drug in July.

1 November 2004.
I am now starting to get paranoid, as I still haven’t noticed any progression, yes I know many if not all pals would like not to be progressing but am I progressing somewhere that I haven’t noticed? Or am I just being ignorant? I know what will happen I will notice progressed areas all at once BANG! Hitting me like a tone of bricks. I have been having bowel problems and to date it has become server, my GP performed a stool sample, which came back clear so I now await an appointment to see a specialist (If it isn’t one thing it’s another) I have also been having urine problems for past 4 years which is finally going to be investigated when I get appointment from the gynaecologist. OEC treatment umm maybe I wont even comment on that some mixed feelings right now, things are not quite adding up Darren does NOT want me to go ahead with oec. ONO trial visit is on 11 Nov so shall update on that in December. My current meds are ONO trial drug, Baclofen, Rilutec, Quinine, I have also been taking Blue green algae supplement for about a month I dont know whether it helps or not.My mum keeps telling me my speech is clearer, (yes it is) but I personally think that my speech is better some days than others so who knows ?

ATTENTION 2nd Nov 04
I think we need to get a few things straight in regards with OEC treatment, as one person said to me yesterday 1/11/2004 “If you are not prepared to take the plunge, you’d better say "no" to the OEG surgical treatment. I have to say this did make me laugh, just because I am sceptical and very cautious and that I'm NOT jumping into the deep end doesn’t mean I don’t want to go for OEC treatment. Everyone is entitled to have second thoughts, gee even people on there wedding day have them.
I will try to explain why I’m having negative thoughts about OEC.
I was told in September that approximately 100 pals had undergone OEC procedure.
I was told in September that all apart from two pals (out of approx 100) had all been stabilized. The other two pals still progressed at their normal rate.
I was informed in September that Dr Huang had performed the treatment on 40 pals.( Presentation at the Neurology Dept of Harvard University )
Dr Huang claimed there were no negative effects of the surgery (but it is not at all clear how he can make such a claim if he is not maintaining contact with the patients).
I know that only 40 pals had undergone OEC. (Up to September)
I know that NOT all pals have been stabilized.
I know there has been some negative effects, whether it be an infection, or other it is still a negative effect from OEC.
I also dont see why Dr Huang cant follow up all OEC pals whom live in china, whether it be by email or other forms of contact.
There has been some positive reports from Pals who have oec treatment, also deaths but not known whether this was due to complications from treatment.
Now you may see why I am having these negative thoughts, when one person is claiming one thing and another person claiming another.
I shall finish this now as I feel I do not have to explaine my self to anyone, PISSED OFF ? yes I am.

12 November 2004
I am bored so decided to write in my journal, I weighed myself after trying a pair of jeans on that was tight on my hips, they now fit perfect. I have lost about 3lbs in the last 4 months now 9 ½ stone, I can’t say that I’ve noticed weakness in/around my hip area, but have noticed that my legs shake more when I stand. Apart from that I haven’t really noticed anymore progression, what I have noticed is that I keep losing my appetite, one day I eat loads the next I hardly eat nothing. I have been smoking pure weed for about three weeks now instead of the solid form of pot, which contains lots of shit. I do notice the difference in the two; weed has a more mellow effect. OEC, I am still not convinced about the affects oec supposedly has on pals nor am I convinced about BNG. Why? You may ask, I know you can’t go by the results of just one person but I shall use this person Ben Byer as an example. BNG, Steve Byer told me via email that Ben’s speech was slurd before starting BNG, after being on bng for several months Bens speech apparently was back to near normal. (Fair enough, great news.)OEC, after seeing the footage that was shown on US news, I became sceptical/suspicious because as Steve had said to me previously “Bens speech was back to near normal” that wasn’t the case shown on the video, Bens speech was in fact slurd and hard to understand. I also wasn’t convinced like many other people about Ben’s speech after oec, mainly because Ben counted from 1-10 in a raised voice and not in a so-called normal manner. If I am wrong, I’m sure people will inform me. I would have copied the email Steve sent me in regards to Ben & BNG here, but it got lost when I got new pc. So is OEC & BNG working for real ? I dont know.
ONO, I didnt have to attend the ono trial clinic this month because of my bowel problems, next visit is in January sometime.

1 December 2004
I have decided NOT to go to China for OEC treatment, the £800 what was raise for oec, will be donated to a fellow Pal John Bell for his oec treatment in April/May good luck John. Not such a good month as I currently have a chest infection & cold, treating with antibiotic, the good thing is I know I’m still able to cough out the mucus. Clonus has gone been more hyper than normal, can barley walk because everytime I put ball of foot down on floor legs jump real severe.Build-uk.net has a new Website thanks to fellow Pal Pete's son Matt. A update on my condition: Severe clonus and stiffness in legs, body wide twitches, wasting in arms, shoulders, tongue, hands, and in legs (I think), weak neck If I lay flat it is impossible to lift head. I can barley walk with no shoes on, when I move legs they jump uncontrollably, uncontrollable emotions more laughing than crying, upper body more weaker than lower, very brisk reflexes. I can still just manage to put on trousers, underwear, cannot put socks or shoes on as body it to stiff and wont let me bend all the way down. Cannot put bra, tops, on as arms to weak, can put some tops on if they are real baggy.Christmas is only 24 days away, time sure does fly. We have put up the xmas tree and deco's or should say Darren did, I was the superviser lol he did a good job, if Darren wasnt here I think I would have progressed more rapidly. I love him and the girls more than life it's self, I have started to do more with the girls painting, drawing etc...which they love and enjoy.I have removed my functional rating chart as it's to much hassle.MERRY CHRISTMAS & A HAPPY NEW YEAR !
Until next time later xxx