View Full Version : Rapid progression

8th May 2011, 19:58
We all know this disease is rapid, but i've found that my forearms and hands have gone from weak and limited to downright useless in the space of 2 days ...... has anyone else experienced this rapid change? It's really quite perturbing!!:mad:

Has been daughters birthday weekend and have eaten lots of party food, so don't know if food was loaded with msg and that's affected?

Z3 Driver
8th May 2011, 20:08
hi, i notice if i have a busy few days then my arms are worse. Rest for a few days and they do recover a little.
When i get frustrated about not being able to do everyday tasks i seem worse also.

8th May 2011, 20:29
I've felt its speeded up but like kevan says when u do a lot it seems to make things worse. Plenty rest can make a big difference

Z3 Driver
8th May 2011, 20:32
or have a few beers and you don't notice :rolleyes:

8th May 2011, 20:43
Been doing that quite regular lol but only problem is i am prone to fallin even more than normal :)

Z3 Driver
8th May 2011, 20:57
nothing wrong with that Chris , i get out as much as i can now, and when i cant , there is always my beer fridge ! i might be all fingers and thumbs now but i still dont spill any :D

8th May 2011, 20:58
hi guys, thanks for the reasurrance. Have been really tired, mentally n physically so hopefully rest will be the ticket.... legs have got worse over last couple of weeks so am know looking at a scooter :-(.

just been a bit pee'd off recently with this disease n haven't felt like talking much, hence not being on the forum for a while.

8th May 2011, 21:07
It does get tough at times mate, i'm up and down like a friggin yoyo! Its easy to say stay posative but not quite as easy to do. Ive been looking at scooters too, take a look at this one i got put on to, if its not what your after look around the site there's plenty, good prices too.


Get some good rest matey ;)

Z3 Driver
8th May 2011, 21:30
looking good Chris but needs some bigger wheels and a spoiler ;)

yes rest is the only cure, last week i was fatigued everyday. couldn't sleep it off . just had a chilled weekend and feel much better.
Im finding it hard to adapt to the slower pace of life my body now demands , makes me feel really old when im not. but acceptance is the only way to feel better physically and to have some energy to do the things i love to do.
take it easy fella

8th May 2011, 21:44
Oh i will be taking that basket off and adding a few mods ;) cant seem to find any 19inch alloys yet!

8th May 2011, 21:47
can't see a scooter I like, started looking at automatic quad bikes instead :-) lot cooler n quicker if only I can get my leg over n wind it back :-)

Would def have to mod a scooter, custon pearlesent paint job, bbs split rims n coilovers me thinks

Z3 Driver
8th May 2011, 21:57
im going to lower mine with eibach springs to corner better. the old dears in asda aint see nothing yet. i'll be like a whirlwind going past them.
no comment on the ' leg over bit ' :o

8th May 2011, 22:01
I just really gutted that I'm going to have to part with my beloved 1983 supercharged golf, not enough strength to handle the torque steer anymore :-O.

Do they do track days or 1/4's for modded scooters... if not could organise a forum meet at the pod ;-)

9th May 2011, 11:12
I'm in the same boat as you lot, but I think I will try and drive as long as possible then go straight to a power chair I just don't think I could bring myself to drive one of those scooter things, also don't forget your arms will go, so anything with handlebars will be useless too. On a similar note I asked my OT to look into getting me a power chair - what a palaver, they refer you, then a local wheelchair company assesses you, your house, the ability for the chair to be manoeuvred from outside to in, you have to when eye test as well. They give your voucher and if you want you can pay the extra for something decent - I said what about one of those four-wheel-drive ones - at least then you can use it when you're out and about - you can have one of those but only if you can use around the house too.

Has anyone else had any similar experiences with this and what chair is would people advise that can be used indoors and out - I also live on a one in five incline - well the access road is!


Jacqui Priestley
9th May 2011, 12:25
Hey Guys, I bought myself a second hand monster scooter (cost 900). No good for folding up in the back of a car but sturdy enough to take off road in our local woods & fully road worthy (lights & all). it's a good combo with the powered wheelchair - I use the chair around the house & shops, the beast for fun trips. We've had our WAV adapted so we can take the scooter further afield.

9th May 2011, 12:43
hi jacqui - whats a monstor scooter! any picys?


Ange M
10th May 2011, 18:28
I can see we're going to have to organise a track day at one of the race circuits for you guys !!!

10th May 2011, 18:46
mmmmmmmm a scooter drag race ;) better get mine pimped up when it comes.

Z3 Driver
10th May 2011, 22:47
count me in, sounds like a challenge. Then we'll all go for a beer and talk about scooter mods.
Next it'll be who has the fastest stairlift. :D

Jacqui Priestley
10th May 2011, 23:07
I would lose the stairlift race - nearly fall asleep on it! John, I promise to look out some photos, if I can figure out how to upload.

Z3 Driver
10th May 2011, 23:21
if you have a photobucket account , upload them to there and then copy and paste the IMG code to your post and the photo's will appear. If you dont have an account its easy and free.
simples ;)


10th May 2011, 23:24
went to Drayton Manor with family today, legs really tired so had to hire a scooter. Was a hard admission to make to use one but pleased I did as made for a great day.

Daughter (4yrs) who is a burgeoning petrol head wanted to help daddy drive it. We set it to 'hare' rather than 'Tortoise' (odd but true) and she sat on my knee n did the controls....... crashed straight into the meerkat enclosure at full speed and knocked a headlight out. Nearly fell out the damn thing laughing :-). Did work out that at full speed it understeers on gravel :-)

I'm definitely up for organising a race day :-)

Z3 Driver
11th May 2011, 08:07
more practise needed then for the drag race :D

glad you had a good day .

Jacqui Priestley
11th May 2011, 08:55
Follow this link to see a picture and spec of my scooter. Note though that mine is black and nick-named the bat-mobile by my boys! http://www.scootamart.com/mobility/mobility-scooters/heavy-duty-8mph-mobility-scooters/strider-maxi-4-mobility-scooter.html

18th May 2011, 09:58
Think I've decided on my scooter, what do you recokon to this bad boy? May go for the silver option unless this is matellic :-)


18th May 2011, 13:22
Looks pretty cool - well as cool yhat can be expected I guess! How much is that can set you back?

I wish you could get someting like this though!


18th May 2011, 13:37
Adie found em have you seen these on flebay - shame they dont do a black one!



18th May 2011, 18:36
That's a great quad, would love one too.
The scooters are about 3.5k on disability sites, but found, as you did John, the same one on ebay for 2.7k???? with 2 yr warranty & free delivery. Am I a cynic or are these mobility companies just ripping the needy off because it is such a necessity for them....

Gutted that a poxy scooter that does 8mph will cost more than I'll get for my trusty 328 beemer that does 155 ( apparently ;-) )mph :-(

18th May 2011, 19:50
I know what you mean adie. The one you're looking looks okay sort of. NI don't know really, I might just wait until I can get a power chair - I find the whole thing depressing really

This was the quad i used to own -I only sold it in order to get the quadzilla 450 above, but in the meantime I was diagnosed so that an end to that idea.



18th May 2011, 20:02
You must've had some great fun on that one, looks fab!!
I'm not mentally prepared for a powerchair nor do I feel I really need one yet so am going the 'middle' option of the scooter 1st. My daytrip at drayton really proved how accepting I needed the assistance really made for a better day.

I hear what you're saying about it being hard to accept we can't do what we used to, it's really tough. It sounds trite, but I have to satisfy myself with the pleasures of what I can still do rather than dwelling on the can'ts, it's not easy but I'd get far too pi**ed off if I couldn't do this most of the time. I'm having to prepare for selling my bimmer and my showcar, I think I'm nearly there, but I expect I will be a big girl n shed a tear when they drive off.....
Keep your chin up mate, remember the good times you've had in the past too, they have a habit of making you smile :-)

18th May 2011, 20:14
thanks adie, hope you sell your cars ok.


Z3 Driver
20th May 2011, 19:18
Think I've decided on my scooter, what do you recokon to this bad boy? May go for the silver option unless this is matellic :-)


Hey im loving this one. Can see me flying round Asda on this ,:D:D:D

20th May 2011, 20:06
Thats the same on G60 - adie above was looking at. have a look on page 3 of this thread - i wonder if we did a mass buy we could get a discount?

i might go for one too!


20th May 2011, 20:20
That's a great idea john, it's certainly worth considering. Cheapest I've found is 2,750 on fleabay. Should be able get a few quid off with a group buy.

Going back to the scooter racing thing, I was talking to a guy today who builds & races stock cars, he seems to think if you can change the gear ratio can probably get the top speed up that way :-). I appreciate that by law it's limited to 8mph on the road, but off road you can do what you like. Shame they're not petrol else could add a nitrous kit lol

20th May 2011, 20:42
LMAO,,,,,,,, do you want me to contact them so thats 3 people interested?


anyone else?

Like the idea of the gear ratio upgrade mind you!!

Z3 Driver
20th May 2011, 21:09
Can i stick a BMW badge on it without you guys taking the p### ?

Gearing upgrade, limited slip diff and extra Duracell batteries and it'll be a flyer :D

20th May 2011, 22:05
Better than ebay prices!

and they offer a home demo too - bargain - mind you it just shows the massive profits being made on these

Thank you for your enquiry. We can offer you the TGA Vita for only 2495.00.

This price includes free courier delivery, two year warranty and three months free insurance.

We pride ourselves on offering the most competitive prices on the internet backed up by the best possible service; if you have been quoted a lower price for this model please contact us on 01482 668335 and we will try to beat it.

The TGA Vita is also available to test drive as part of our Luxury Scooter Demo Pack, see http://www.valuemobility.co.uk/Luxury-Scooter-Demo-Pack_Product-457.aspx for more details.

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Value Mobility
Unit 18 Brookfield Business Park
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YO43 3PU

Telephone: 01482 668335
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20th May 2011, 22:21
You're an absolute star John. I'm a definite for one at that price, do we need to group order or can we buy individually and just use the code?

20th May 2011, 22:34
Done, dusted and bought for 2,495 :-) as held that price when tried individual order. Went for the Murcielago metallic orange. Should have this by next week so long as they live up to their delivery agreement.

Mrs is really excited, just need to make sure daughter doesn't crash it.......

Come to think of it, I'm quite excited too :-o

Z3 Driver
20th May 2011, 23:28
we expect a full report of the roadtest and i want the 0-8mph figures also . loving the spoked alloys :)

21st May 2011, 12:08
adie - was the 2495 inc of vat? mind you i would have thought this sort of thing should be vat exempt - let us know how you get on?


21st May 2011, 12:48
price was ex vat, there's a tick box regarding the vat bit.

Just noticed the coment ref bmw badge on the scooter, I can't take the p*ss as I bought my daughter a pink race car bed and put an original bmw badge on that, she loves her beemer bed :-)

21st May 2011, 13:07
what 20% or 5.5?

21st May 2011, 14:56
I presume 20%, to be honest I didn't notice the pre tax price....

Check this out for a video of the thing, looking cooler by the minute....

It's really sad but I'm actually getting excited about getting this now:D

21st May 2011, 14:57
why did you not tick the vat exepmt bit - surely mnd qualifies?

love the vid - looks nice in silver does'nt it? - what colour did you go for?


21st May 2011, 15:24
sry, wasn't clear in my post, it was 2,495 after I ticked the vat exempt box. As you say, I'm sure mnd qualifies but will have that argument with them if it crops up.... can't recall what the vat inc price was.

Having seen the vid I do like the silver a lot, I just have a penchant for my transport being a bit in your face so went for the orange!!. No one can say they didn't see me if I run them over..... Could always add some blue decal to it for mnd colours too lol

21st May 2011, 16:18
do you know if they come apart for transportaiton too?

21st May 2011, 16:42
don't think so, that's a small limitation. Am going to get something like a ford galaxy to put it in when i want to go out for the day. Drive it up the ramp and off we go :-).

29th May 2011, 19:19
Back to Rapid Progression . . .

Now it is my turn to experience rapid progression. Although I have been getting slowly weaker in my lower back and legs it has still come as a shock to suddenly find that I can no longer stand or walk with a stick. I am getting around the house with a rollator now. The muscles around my lower back can no longer support me so I slump when I sit and the poor posture is causing a lot of pain, making it very difficult to use my desktop computer. Good news is that my right leg is still working well and so I can still drive safely once I get into the driving seat. Thank goodness it is automatic.

The challenge now is to adapt to these latest changes and find new ways to do things. has anyone used a lumbar support / corset to support the spine? I have an appointment to be measured for one in two weeks time.


1st June 2011, 17:57
Hi Clive,
I used a lumbar support for a while which helped a bit as I was getting a lot of back pain due to my trunk weakening.. I also managed to get Hydrotherapy from Phsyios here which was a fight but got it on the grounds of 'pain in the back' - we dont get it for MND as we dont rehabilitate. The hydro helps keep my muscles from stiffening up and they have granted me 6 sessions with a view to paying a small fee to go with a carer for another six.

Another aid which I have found totally invaluable is my leg brace (am about to get one for my other leg too) - not only do they stop your foot dropping and dragging but seem to give the most amazing amount of support when moving even though they are such simple things and I dont move, even when lifted, without it as it helps what little weight bearing I can do = but maybe you have one anyway.
cheers vanessa

2nd June 2011, 08:29
Plenty rest can make a big difference

2nd June 2011, 21:56
Rapid Progression

Hi Vanessa

Is your leg brace a foot support, looks like a shoe horn bent to fit round your heel and under the sole of your foot? I have a thing called a "Foot up" that fits on top of my shoe, but this needs shoe laces. I can't use it now because I now use velcro fastening shoes.

I am really hoping the lumbar support will support my core, so I am encouraged that you got some help from it.


3rd June 2011, 11:21
There is another version of Foot-up which can be worn with shoes without laces. My physio has provided them for me.

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