Numb toes

[Plain]

I have cerebellar Ataxia, does anyone else have numb toes if you stand for awhile.

Why is it so hard to walk down a hill, but so easy to walk up a hill with no problem thank you.

[Thomaslondon]

My husband has the same problem when waking up and down stairs. It is all the do with the different muscles that you engage - hamstring on the ascent and tibialis anterior on the descent. It's great that you are still managing to climb those hills. Keep going and good luck.

[Plain in reply to Thomaslondon]

Thank you for explaining about the muscles in the legs. I live on top of a steep hill and walk around the block pushing a rollater just to keep the legs going . Always think if you don’t use it , you lose it..

Hope you husband is able to keep moving about .

[Thomaslondon in reply to Plain]

That's so true Plain. Keep moving for as long as you can. My husband is finding it more and more difficult to move around but he keeps on going. I have just purchased a TENS machine to help with the muscles spasms and pains in his legs. I will let you know how he gets on.

[HOTRODS in reply to Thomaslondon]

My husband is finding it more difficult to walk. His balance is getting worse. He keeps pushing himself and keeps on going. Stairs up and down is definitely a worry.

He is using his cane more which helps a little. People see him and wonder if he been drinking. It's hard for him to accept this disease and feel a if he just keeps going it good for him. It's hard for loved ones to watch him.

[Plain in reply to HOTRODS]

Hello I find going up and down stairs , go one step at a time.I push a trolley with wheels , the paintwork is taking a bashing as I can’t walk in a straight line. I feel for your husband as I know the frustration of trying to get about . The only time I feel normal is when I’m sitting down or laying in bed. It’s best to try and keep using your legs if you can. Hope this helps.

[HOTRODS in reply to Plain]

Thank you. Yes you have to just keep going. Good luck to you.

It would be wonderful if a cure could be found soon.

[Thomaslondon in reply to HOTRODS]

Hi Hotrods

My husband had the same problem with people judging him and assuming he was very drunk. It's hard but you have to try and focus on the positives and cherish the good days.

Our occupational therapist had been brilliant, having rails installed in the bathroom and up the stairs. It makes all the difference.

We are all here to support you when you need it.

Good luck

[HOTRODS in reply to Thomaslondon]

I only wish my husband wouldn't be so stubborn and have rails and a chair installed in the shower.

Thank you for your response.

[Thomaslondon in reply to HOTRODS]

It's hard to see the ones we love struggle but it is equally hard for them to accept that they are losing their independence.

My husband is also a very proud man and has refused many of the support aids which would make his life easier.

My GP and the OT convinced him that it was not giving in but learning to accept the changes and to work with them. They also pointed out the safety aspect and fears we had if he fell.

The home assessment take very little time and the OT makes suggestions for you to consider. Perhaps your husband will then accept the essential modifications that will keep him safe and alleviate your anxieties.

The service is free and the basic modifications are done within a very short time frame.

Hope this helps and once again good luck.

[HOTRODS in reply to Thomaslondon]

Thank you do much.

[ConfusedAtaxian]

Hi Plain.I feel like I am going too fast if there is even a slight incline but am told by physio stair are good for me. (I’m still getting a bungalow!)

[Plain in reply to ConfusedAtaxian]

Hello confusedAtaian, thank you for your reply, I know how you feel on a slight incline. Have to take tiny steps , it takes ages and if I’m in a shop can feel any uneven bit on the floor. When going up a hill it’s a lovely feeling , want to shout for joy . Can’t get out when it is windy .do you have the same problem.

[ConfusedAtaxian in reply to Plain]

I don’t try to go out when it’s windy.

[Tiggywinkles in reply to Plain]

I am just the same as you with any inclines. Even on pavements where there is a lowered kerb for wheels - prams, wheelchairs, etc. - I feel like I am going to run out into the road. It makes walking very difficult. I cannot hold myself and my rollator back on any slopes so have to have someone with me to hold the side of the rollator when I come to any.

[Plain in reply to Tiggywinkles]

Hello , thank you for your reply, I’m 74 a few years ago I could walk anywhere , this has only worsened since the age of 62,

[Tiggywinkles in reply to Plain]

Hello, I am 55 and my problems have got worse in the last couple of years. I have late-onset Friedreich's Ataxia which didn't start until I was in my 40's and are getting rapidly worse now as my mobility is compromised by another problem with one hip. Waiting to see someone about that, only 10 more days but not sure if they are going to be able to help!

[Plain in reply to Tiggywinkles]

Do hope they can sort out the problem with your hip. I have cerebellar Ataxia inherited from my Dad which gets worse as you get older.

[Litty]

That is so so me - my feet are always freezing and my body roasting. I love uphill but HATE downhill. Stairs need to be backwards x

[Plain in reply to Litty]

Thank you Litty for replying my hands also go icy cold , not all the time.always have to hold on the rail when going up and down stairs.

[HOTRODS in reply to Litty]

Hi Litty interesting you say stairs need to be backwards. Wouldn't that be more dangerous. My husband has major problems with stairs both going up or down. He holds on to the railing and slowing climbs the stairs. It's such an awful disease and so hard to watch the decline. Not sure what the future holds for him and it's a big worry.

[benning]

This is my Theory-THE BLOOD CIRCULATION IN YOUR TOES IS NOT BRILLIANT,TRY MASSAGING THEM ETC...

[Plain in reply to benning]

Thank you, yes I do rub my toes to get the blood moving . It helps.

[Hidden]

I to also have Cerebellar Ataxia, my whole waist down goes numb if I seat for a little and trying to walk on it hurts.

[bevvick1964 in reply to Hidden]

Hi my toes are purple and waiting for a cardiologist appointment which has been cancelled 5 times already!!!

[Hidden in reply to bevvick1964]

Cancelations can be to much at times knowing doctor's like this never have soon appointments, I've never had purple toes but they have been numb.

[KiwiBob]

Hi, I get pins and needles a lot of the time with my toes and feet. Sometimes they go numb . Also they go into spasms depending on how my feet are setting or placed. It’s very painful.

I don’t know if this is part of my Ataxia.

My hands get numb a lot of the time.

[Plain in reply to KiwiBob]

Hello I’m lucky in not getting any pain , just toes going numb at times when standing for a while. My hands go very cold. Wearing fingerless gloves in doors helps . Thankfully it doesn’t last long. My Dad had Ataxia and his hands used to go blue with the cold.

[KiwiBob in reply to Plain]

Hi, I lucky that they don’t get cold.