Physical therapy

[Mollymeer]

My neurologist has recommended that I go to physical therapy. My question is how long do you continue with PT? I know they will work on balance, walking, strength, coordination, etc. and it may improve a little. The last time I had gone to PT, the therapist kept giving me exercises but I wouldn’t say it made my walking any better. In fact, it seemed to be frustrating to her that I wasn’t getting better! I have looked for special neuro physical therapists, but there are none near me.

[isabelalfaiate]

Dea4 Mollymeer,I used to go to phisio therapy. The idea was not to get better but to keep my muscles active. I am sure phhisio would help, but since the pandemic I thought that enviroment was a bit propicious to get covid and they also closed for a while. So I joined a gym and it has helped a lot. I cannot say I am better, but I am stronger, still walking unaided at home. I do loose my balance but am able to contradict it not to fall. Outdoors I walk holding on to someone and my reactions are better. I go to gym everyday and train with a personal trainer once a week doing specific co-ordination exercises. It has not improved my autonomy but slowed down the progression. I am 68 was diagnosed at 56 but had symptoms since 52 and am still somehow mobile.

best wishes

[Mollymeer in reply to isabelalfaiate]

Hi Isabel, Thanks for your positive and encouraging response! Your situation sounds a lot like mine. I do have the opportunity to visit a gym but have cut back because of covid. I hate wearing a mask while exercising! But I know how important it is to go. Best wishes!

[ninotchka in reply to isabelalfaiate]

You are so correct to be doing all that! It keeps you being able to MOVE. If you weren't doing all that, you would be degenerating.

[chelpet]

Good news and bad news.

The bad first. It NEVER gets completely better/sorted. The condition is constantly degenerative.

And now the Good News. One can, and it’s my experience, that constant physical therapy - in my case - 3 years of Pilates, Balance and Strength classes, constantly challenging myself - means that I get more and more ‘on top of’ the Ataxia condition, make tons of new friends, and find myself developing a new, much more confident and powerful attitude towards the Ataxia, which constantly seeks to limit and restrict my life.

It’s not always easy, but ‘ if Life gives you Lemons, then make Lemonade’.

Peter

[Mollymeer in reply to chelpet]

Thanks for the response Peter. You’re right… it is not always easy! I loved my Pilates class but had to stop after a fracture (from osteoporosis).

[Driven1 in reply to Mollymeer]

Go to an endocrinologist and they will do a bone density scan. They can prescribe medication to assist. You will fall again as I do but have not suffered fractures again

[wobblybee]

I saw a NeuroPhysiotherapist for Vestibular issues, I have BPPV ( Benign Paroxysmal Posterior Vertigo) and she tried manoeuvring ( Epley Manoeuvre) my head in various position to realign ‘crystals’ in my ears. But the problem had existed too long without treatment, and I never had any good results.She took me through a series of general exercises to do at home and gave me gave me printouts...

[Mollymeer in reply to wobblybee]

Thanks for your response wobblybee. Luckily I don’t have any vertigo…that combo of vertigo and balance would definitely be a challenge. I think the answer for me is to continue at home or at a gym and be more active.

[wobblybee in reply to Mollymeer]

🙂 I tried Pilates, and I liked it..the movements were do-able for me at the time ...

[Driven1 in reply to wobblybee]

Sounds like you were going to a Kinesiologist with Crystals. Find someone else. Statements like "existed too long" is a cop out

[wobblybee in reply to Driven1]

I disagree. I’ve been by Specialists, not a Kinesiologist, and am satisfied this has been fully investigated.

[Driven1]

It is not a matter of getting better, it is a matter of retaining what you have.

[nigelrheath]

I think the gist is ataxia doesn’t get better. This doesn’t fit with physios or therapists, who are always looking to return us to the status quo. If you work in whatever way helps you to keep your body strong and flexible, then you can have a less limited life. Separate other ailments from ataxia and seek appropriate medical advice to deal with them. Dealing with ataxia is down to you. Like the others I do stretches every day and use my local gym 3x a week. I am wobbly and fall, but I laugh a lot and most of me is healthy. It may seem like a lonely road but you are not alone, we are with you.

Nigel

[february]

Dear Mollymeer, I highly recommend physical therapy to keep your muscles moving! It doesn't make your walking or balance better, but keeps what you have going (for as long as possible). If you don't use it, you lose it! Anything you can do to keep moving is positive (like going to a gym or doing exercises at home). My best to you..., ;o)