balance and falls

[Suz64]

hi

I haven’t been on here for a while, over the last few months I’ve been loosing the use of my legs and falling, is that normal progression with the disease? To me it seems to be happening to quickly. I’m not sure if it’s a blip or real progression ?

If anyone has any thoughts on this I’d be grateful to hear thank you xx

[esj20]

Hi Suz,

I hear you and have the same, my left leg especially. I've face-planted a good few times now and broken my front tooth too! ( superglued the bugger back until I can get a dentist)

Happens a lot when I'm alighting the car and my left leg doesn't want to alight at the same time as my body,

Joking aside, yes it does appear to be a symptom. I now have gone to using crutches when walking and this time last year i climbed the mountain goat fell on Arran.

Hopefully a blip Suz for you.

Yours Alec

[Suz64 in reply to esj20]

thanks Alec. Yes I use to be along distant walker/trekker but that’s all changed 😟

I’m heading for a power chair but there is an old saying 'if you don’t use it, you lose it! So I will try and use i mixture of power chair and walker.

[esj20 in reply to Suz64]

Its bloody cruel Suz, i was a long distance walker too and i'm now a short distance shuffler !

[Monkeyfeet1 in reply to esj20]

I also face-planted last week! I can’t believe I once used to climb and it’s tough to see photos of me fit and well on the Inca Trail 😢

[Yanno]

Hello Suz,

Unfortunately nothing seems to be normal progression with MSA! Jackie 'went off' her legs very early on, indeed it was her complete loss of balance that made us realise something was very wrong.

I entirely agree with the use it or loose it argument however I always said it's better to go in a wheelchair for a mile and then walk 20 metres rather than just walk the 20 metres. Also, so so often we've heard of people with MSA who have fallen, broken something and then MSA seems to take a tighter grip.

One of Jax's biggest sadnesses is that we can no longer walk in the mountains, and ski down the hills. Having said that we continue to do what we can. We are very active and lucky enough to have a range of wheels chairs to suit most needs.

Good luck, Take care, Ian

[esj20 in reply to Yanno]

Hi Yanno,

Fortunately i'm not on wheels yet although, its very heartening to hear that like others we adapt and change to get the most out of life!

Alec

[Gill-C]

Two broken jaws later I can certainly say that balance issues are a big part of MSA!

That said, I was surprised how much neurophysio was actually able to make a difference to my balance.

It does feel like it’s brought me more speed and certainly more confidence in walking. For how long that will last I don’t know, but being obstinate sometimes feels like the last line of defence to MSA, although it’s a damn tiring way to live!

Do ask for a medical review though because there aren’t meant to be sudden changes with MSA and your deterioration does seem quite abrupt

Also, do keep posting when you can. We are all here for you.

G x

[Theburnleycarer]

Hi

Oh yes lots of falls or overbalances are a feature of my wife’s MSA journey, indeed the other day she left our flat to collect a parcel from the front gate. She was unaccompanied (I was out shopping) and she fell into a bush. Three people walked past without offering help presumably assuming her to be drunk - fourth person was much more helpful and all was well - another MSA lesson learned- hopefully!

D

[chester2107]

this was the first thing that effected my dad , and his speak being slurred like he was drunk

it took a couple of years for him to get a diagnosis, so a bit wobbly before that

everyone is different with this disease 😞

[mandg]

Yes Suz, similar problems to most of the other replies. Graham seem to be getting more and more immobile and certainly unsteady, but like they say use it etc... we go for a very short walk with the walker in the cul de sac just to keep the old legs going as long as we can, not sure if its working, but you have to try dont you?

Mary

[Suz64]

thank you everyone for your comments and advice have a lovely Monday and enjoy the sunshine xx

[Monkeyfeet1]

it’s my concern too.

I cannot now balance at all without holding onto something. I tend to fall once weekly but would fall more without my indoor Walker. My biggest concern is seeing the reactions of professionals.

I would recommend an indoor Walker- I tend to get around more now. Xx

[ReverendBadger]

My mobility and balance degraded quickly over 8 weeks with 5 significant falls Luckily no significant injuries. Now walking with mainly frame in house or stick and for outings e.g to hospice am in wheelchair. I was still driving,going shopping,eatin out in January. Consultant sure its all MSA but agrees my progression on many symptoms seems faster than the average.Prognosis therefore poor, hospice already done SR1 form.And before someone says "Maybe you'll be lucky and get 2,3 or more years" I should just like to point out that if I possessed even the tiniest fraction of a scintilla of luck I would not be sittting here with an incurable fatal brain disease.

L

[Monkeyfeet1 in reply to ReverendBadger]

it’s lovely to hear from you ReverendBadger. I’ve missed you xx

[ReverendBadger in reply to Monkeyfeet1]

Thanks,you may see me round here more often as the specialists have finally admitted there is nothing they can do for me.

[Monkeyfeet1 in reply to ReverendBadger]

I’m very sorry to hear that. But please do come here for support. Just as you’ve provided it to others ‘. Sending hugs x