Cerebellar Ataxia Constant falling

[terryzx]

After nearly 15 years of mild Cerebellar Ataxia it seems to be getting worse. I'm falling every day. I find that what is causing my fall is that the rubber soles on my shoes sick to the floor and stops my forward motion...thus causing my forward movement to suddenly stop. That causes me to suddenly stop my forward motion and end up falling one way or another. For some reason lately, I'm not lifting my feet up enough when walking and the sudden traction where I was not expecting it throws my balance way off and causes me to fall....No problem at all when sitting. But my feet grabbing the floor has got me loaded with cuts and bruises. I live alone so I have to do everything by myself. Any suggestions would be more than welcome. Thanks in Advance!!!

[wobblybee]

🙂 Hi Terry

I’ve just come indoors after tackling some pruning, and I have to tell you my feet were behaving in a similar fashion, they don’t move automatically like they used to and I had to be very wary of picking my way around cuttings🙈 But it’s not just outdoors, I’ve noticed on several occasions I’ve had near falls simply because at least one foot has seemed glued to the floor when I turn or take a step. It’s just so easy to lose concentration and forget this can happen 😶

I’ve almost reached the stage where it would be sensible to use a walking stick etc indoors for safety’s sake. This is a must outdoors, and I also have a rollator for bad days. As you say, no problems at all when sitting 🙂

[terryzx in reply to wobblybee]

Thanks for your reply. I had to give up yard work as 2 years ago I picked up a brick eo get it out of the way of my lawnmower and foot locked in place and I fell on the brick smacking myself in the left side of my face. No I pay a service to do the yard.

I was using a cane but actually it made me feel even more off balance...so recently I bought a carbon fiber rollator that a lady in my senior group had recommended I get and it really helps a lot. I was against having to use that, but a few months ago going in the hospital for a doctor appointment I tripped over my own feet and smacked my face into the sidewalk. Was not all that bad but people freaked outing called the ER who sent ab ambulance that I had to refuse.

Today I had a ceiling light out in the garage an fell 3 times without being able to reach it. I finally called my neighbor who cam one and changed it for me while telling me how worried he was being here alone and possibly falling...but I do carry my cell phone on my belt and so far have not had to use it.

Can't count how many times I have gotten up an ended falling into over over furniture.

Had a neurologist tell me I had Parkinson's. I knew I did not as I read all about it and diagnosed myself as having Ataxia. So I went to the Cleveland Clinic who concurred with me. The worse part was finding out there is really nothing they can do to help me. The idea of having this the rest of my life is more than frightening. One doctor told me it was not terminal BUT you will die WITH it. Not good news at all as it seems tone getting worse.

[wobblybee in reply to terryzx]

😏 I fell at home and knocked myself out when I hit the tiled floor, luckily my husband was upstairs and heard the ‘bang’.. Have you thought about getting some kind of ‘alert’. Some people recommend the Apple Watch.

[terryzx in reply to wobblybee]

I hate wearing a watch now. Good idea though but I don't have anyone who could/would respond to it either.

[wobblybee in reply to terryzx]

🤔 It’s possible that it could alert emergency services, or a call centre. It’s worth looking into 🙂 I stopped wearing my watch years ago, I always wore it on my left wrist, but then I had to have chemo in that area, and the chemo went ‘wrong’ 😶 My wrist needed emergency treatment..I’ve never worn my watch since. Obviously it has healed now 🙂

[terryzx in reply to wobblybee]

I'll look into it but from what I hear monitoring would be costly and I am low income so not a lot I can do unfortunately

[Dolly63 in reply to wobblybee]

Some of the new life lines you wear,now have an automatic fall alert on them so you don’t have to press them

[chelpet]

I find my weekly Pilates classes, plus 3 or 4 times a week Balance and Strength classes (at present on Zoom), invaluable for helping me stay supple, strong, balanced and confident on my feet. The exercises don’t totally eliminate the Ataxia symptoms, but help enormously, as I try to counteract them in my life. I was diagnosed myself with Ataxia some 6 or 7 years ago, and it requires constant ‘pushing against’ as the creeping onset and growth of the symptoms can really blight one’s life, if just ignored. Peter

[penelope2 in reply to chelpet]

Hi chelpet. I also try to keep active and do exercises, staying strong definitely helps me and I am always on the lookout for exercises that suit me. Could you please send a link of those that you use.

I too think I have had ataxia about 6 years or more and try to challenge myself in a variety of ways.

Sometimes it is really hard to keep motivated but I feel there is no other option, to give up means this ###### ataxia is getting the better of me!!!!

Take care x

[chelpet in reply to penelope2]

No links I’m afraid. The classes are all live on Zoom, but I have contact details/addresses which I can dig out when I get home from holiday, if you’d like, Peter

[Cupcake12345]

Just so you know I was very reluctant to wear an Apple Watch. I have it set up to call my husband but it automatically uses GPS to give your location to the emergency services if you don’t move. I have fallen a few times and set it off but you can say you’re ok and it will leave it. It’s totally free and a lifeline!

[Mneutz]

Hi Terry

When I lift my feet to high off the ground it can send me off balance. I have fallen backwards and forward. I use a rollator now. But I sometimes say in my head, heal-toe, heal-toe, when I walk to remind myself putting my heal down first will steady my pace. I’m just happy to still walk and do things. I took care of my mother and eventually she needed help getting up to the bathroom. It’s hard when you can see your future. Just keep moving. Our family has genetic SCA 6.

Good luck

Tina

[terryzx in reply to Mneutz]

I'm also trying to remind myself to step as I walk. Easy to forget. Main problem is when I first get up an start off. That seem to be when my (mostly) right foot likes to stick thus throwing me off balance. Usually when I get past that starting point the rest mostly seems to go well...but doesn’t always happen that way.

[Welcomebubba]

Don’t ever wear sketchers in any form 🤷🏼‍♀️

[terryzx in reply to Welcomebubba]

I won't and don't. Thanks for the tip

[Mneutz in reply to Welcomebubba]

I love my sketchers....

[mizzdancer in reply to Mneutz]

Sketchers are the only thing my mum can walk in ...

[Guido37]

Hi,I feel for you. I find flat based walking shoes work well as there is no heel. Good luck.

[terryzx]

I wear flat athletic shoes...but they all have rubber soles that I need as a leather sole causes to slip. However when I don't lift my feet up properly the rubber grabs the floor too soon causing me to trio and sometimes fall.

[penelope2]

Hi terryzx

What I find best for my 'sticky feet' indoors on hard floors is to wear just socks. Thicker ones or even 2 pairs when it is cold. Also I practise lifting my feet up high, over and over again, holding onto something if necessary.

Crocs used to be my goto slippers but not now.

Take care

[ninotchka in reply to penelope2]

"Yoga" socks work great and they won't slip. They have little rubber pads on the ball of the sock. The one with separated toes are fun. too.

[terryzx]

I'll look in that. Thanks

[Driven1]

I use boxing weights on my feet when I go for a walk. It gives better feedback that I need to lift my feet. Then rest of day at home much better when walking around without them

[terryzx]

I's love to do that also but I no longer can walk very far easily. I occasionally need a cane an I just bought a Rollator as that cane makes me feel lopsided, At home I don't use anything...kinna bounce around all over an hope that if I fall it would be on something soft. Mostly is.....

[StuartLondon]

Hi. I suffered a mild stroke that damaged my cerebellum. This resulted in vertical nystagmus. When I turned my head rapidly I would fall over. Because this a rare condition the balance team at Charing Cross did a lot of tests on me. Eventually they found the cause. They tried various experimental drugs which all had terrible side effects. So I stopped them and learnt not to move my head. It had been great for a few years. However recently I have a few incidents where I suddenly lost my balance for no reason. One resulted in broken glasses and severe bruising of my left side. The team are baffled but we cannot do anything at the moment due to COVID lockdown. There is a concern that some of the drugs I take are having side effects so we are testing it this is the case. Waiting to results. Best of luck to everyone suffering these balance problems. Patience is required.👍😀