I have a question about PTs v. Neuro's

[neta]

Yesterday, a PT (Australian) came to see me. There's a fundamental difference, I think, in the way he think and the neuro approach CA. The PT (very experienced) truly believes that the neurons in my brain which deliver messages (cells?) are shut off and can be re-stimulated via exercise... specific ones, repeated many times The neuro says these "connections" are dead and only a miracle drug will bring them "back". The PT also asserts that positive thinking is very helpful--something the neuro says can't hurt ut is neither here nor there. What do you think?

[Iain_100]

Hi neta,

I don't really want to get into the whole Neuro v Therapist debate. I'm happy to believe both. Both believe that what they say is true (and the scientists in me tends to believe the neuro more).

What I don't like to see though, is that people pin their hopes on some alternative cure that they believe will someday save them from ataxia.

It is only likely to get worse in reality. And accepting this is the key - as far as I'm concerned.

And grasping at the hope of a cure, stops some people from honest acceptance.

Once ataxia has been accepted though, I have absolutely no doubt that positivity only helps deal with the consequences.

[neta in reply to Iain_100]

Yeah Iain, hi there and thanks for answering...

I agree with you. But this Aus. PT was so super confident. He even said he laments a future cure because ideal patients like me will vanish. He also said PT is a slow process and I have to work with my mind and body. He asked me; "Can you play Chopin as a new pianist?" I did see his point and did walk away with (maybe false) hope. But I still find positivist thinking hard. xxxx N

[Iain_100 in reply to neta]

Don't get me wrong neta. I'm all for anything that makes it easier to deal with ataxia. And if it makes ataxia easier for you, then brilliant.

I also have a rather good physio. She also has 3 other patients with ataxia, so she knows what she is doing.

I can't say this enough though. Acceptance really is the key. How long it takes to fully accept the limitations of ataxia is completely different for different people. And you can't kid yourself on that you have accepted it. Tried that - it doesn't work

But it is the #1 thing worth striving for.

True, ataxia is still there (and getting worse). But it is SO much easier to cope with the consequences when you are feeling better in your head.

Iain x

[neta in reply to Iain_100]

Right. I think it is getting worse and quickly. I cant get this acceptance thing around my head. There are so many reasons why starting with I was hardly ever sick.

[TedTom]

Some time ago my friend asked her neuro how her cerebellum ie the part of her brain that has been affected by ataxia, compared to someone not affected. He showed her the scans that had been taken of her brain over the last few years since diagnosis. These show very clearly that the cerebellum is now smaller than it was. That part of the brain that was formerly there to do certain jobs like interpret the messages to control balance etc simply didn't have as much capacity any more, with some areas having more loss than others. Many people have taken the well meaning but I think flawed approach to my friends ataxia in that if she exercises more, " tries harder" etc, she will be ok again. If only that were true! Nobody could try harder believe me. Could anyone play Chopin if their fingers were gradually shrinking? I can appreciate what the physio is doing but worry that this can come across as false hope or not trying hard enough. Acceptance doesn't mean giving in, quite the opposite. It means right, it is what it is, what s the best way to beat it back? Many posts on here demonstrate the benefits of healthy lifestyle, exercise and determination and I totally agree. We are all in the dark about what the brain might be capable of, who knows how other parts of the brain might be able to compensate for the work the shrinking cerebellum can no longer cope with? So you try everything but keep realistic. I believe there will be a cure just like there has been a recent breakthrough for some MS patients ( in the very place where the ataxia appointments are!! ) so you keep yourself in the best shape physically, mentally and emotionally to try and be able to benefit from any new treatment/ cure that happens. Stay strong, I apologise for the lecture!

[PGee in reply to TedTom]

A very helpful, well balanced lecture, which I appreciated. Thanks.

[neta in reply to TedTom]

The lecture was stupendous, thanks much N

[neta in reply to TedTom]

The lecture was great and I do agree w u. N

[wibblywobbly]

hi Neta,

I completely agree with your pt. However that doesn't mean that the ataxia will be gone and that all the symptoms will disappear.

if we do repeated exercises then the neuron connections will get stronger and something that is very difficult now can become easier in just a matter of weeks. Exercises for balance are important too. I also make greeting cards to keep up my fine motor skills. This too has slowly over time become easier.

A miracle cure would be wonderful but until then I feel we must do as much as we can to help ourselves.

At the same time tiredness is a huge factor so we shouldn't push ourselves toooo much as it can take a long time to recover.

I can definitely do more than I could two years ago. And people often tell me how much better my way of walking is😅. Three years ago my pt and I thought I was about to lose the ability to walk completely but with lots of work and determination I'm now walking even further.

Acceptance is another matter and I think it's equally important. I tell anyone who asks what is really wrong with me. Just in general terms. And I was very depressed for at least 3 years. I take medication for this. But depression gets in the way of us getting better or improving so it needs to be tackled. I also had a counsellor who works with all types of disabled people regularly come to the house.

Sorry if I'm speaking as if I'm an authority on this, I'm just speaking from my experience and from listening to all types of professionals and people on this fantastic site.

Alison xx

[margaretm]

A really interesting debate. I went to see a balance consultant- not a neurologist- who said that exercise can make a substantial difference. At the same time- and I speak as someone who has had cancer- I have very little time for those who stress positivity at all costs. They are usually people who have not had serious illness to contend with! I know that exercise helps me, as does fresh air and having a laugh. In the end, specialists can indicate the route, but each of us finds- and frequently deviates from!- our own path.

Best wishes to you all. xx

[angelite]

Hi Neta, great post generating some great replies : )

I think we touched upon neuroplasticity and aiming to reroute circuits in a previous conversation. I found this website that I thought was interesting :

medscape.com/viewarticle/72...

Whatever your PT's belief behind the science, I feel that he has your best interests at heart. Practice and repetition really can help improve function for some. We are not aiming for a complete recovery, since our conditions are ongoing, rather a compromise that may maximise our possible function. I think positivity is a good driving force. Depression affects motivation and can make outlook appear worse, even affecting pain levels in some. Some people find a multi approach, comprising of physio, medication, counselling, holistic/relaxation techniques and joining a support group ( here online or in person ) is helpful. There is no one set rule and we are all individuals : ) Your neuro is correct about the clinical process and will be careful not to give 'false hope'. It is his job to speak plainly, from indesputable facts. However, other disciplines are free to take into account the possibility of rerouting signals and the power of the human spirit : ) x

[Hidden]

Well that's a question isn't it Australians can be incurable optimists (I think its got a lot to do with how far we are away from everyone else, "the cavalary is not coming" we just have to get on with anything by ourselves) Your PT absolutely beleives what he says, so does your neurologist. As Ian said it really is about true acceptance. "Not yeah I've got ...hey but thats cool - and internalising rage/blame/hate/soo sad at loss/guilt - did I do this to myself?/ ~ I won't go on!) Acceptance is like the sun hanging in the sky. That depending on the season, it will be strong or not, you need a coat out or not, very simple The temperature is predicted in the 30's or minus god knows what, we grumble and get on with looking after ourselves. Depression is real and absolutely must be addressed. I reckon "gather info from all sides" and do what works for you. ♡

[ConantheLibrarian]

Dear Neta

If I were you I’d go with your physiotherapist and quite frankly your neurologist deserves a kick up the backside. ‘Positive thinking’ doesn’t mean believing in a fantasy miracle cure it just means thinking that the right kind of exercises can have a significantly positive effect.

Have you heard of Walkingwithataxia.com? This website is produced by an American doctor, Tom Clouse, who has had ataxia himself since 1997. He travels around the US giving free physiotherapy sessions to groups and individuals. He claims that if you follow his exercises you can significantly improve the symptoms of ataxia, even to the extent where someone who uses a walker can learn to walk again without a stick. Does this sound too good to be true? Of course it does. I have had ataxia for 19 years and have been using a walker since 2012 so the idea of me being able to walk unsupported is hard to believe. But if you look at the ‘To Move To Walk’ section (walkingwithataxia.com/to-mo... he sets out a step-by-step programme that is supposed to get you feeling stable on your feet again and then you should slowly start to walk again. I have been doing the exercises for 5 weeks now and have definitely noticed signs of progress. Before I started the exercises I couldn’t take a single step without holding onto something. Now I can shuffle about indoors without any support. To someone whose ataxia is less advanced that might not sound like a big deal but to me it is very important. Previously I could stand up straight but I felt rooted to the spot, now I feel that I’m getting some proper movement back. Obviously it is too soon to say if these exercises will really make a big difference but if they do I will certainly try and tell as many people as I can. Also, if you look at the ‘Testimonials’ section of the website there are plenty of people who say he has helped them. You can also find 2 clips about Dr Clouse on Youtube in which there is evidence that he helps people: youtube.com/watch?v=14-6VMK...(Not working as expected?) and youtube.com/watch?v=Br72k-L...(Not working as expected?).

Incidentally there has also recently been evidence in academic medical literature that the right sort of physiotherapeutic intervention can have a significant beneficial effect. (e.g. ncbi.nlm.nih.gov/pmc/articl... and ataxia.org/pdf/Four_Compone.... The key word here is ‘significant’ – I have often heard people say that if you have ataxia it is good to keep fit and active for as long as possible but what they usually mean is doing exercise might slow the progression down a little bit but in the end ataxia will get you and there’s nothing you can do about it. I don’t agree – how about strengthening your muscles, particularly your leg muscles, for a start? 3 people (a neurologist and 2 wheelchair providers) told me that ataxians have weak muscles and implied that this is the inevitable result of ataxia. Rubbish! Ataxia is not a muscle-wasting disease -–the reason why the muscles become weak is lack of use. I have been doing push-ups regularly for at least 25 years (6 years before I first noticed my ataxia) and I can do just as many repetitions now as when I started. People with more advanced ataxia can't even stand up because they sit down all the time and have weak muscles but I recently corresponed with someone on this forum who had had this problem but after working with a physio can now stand and get in and out of the bath. So maybe if you do the right kind of exercise you can achieve more than you think even though there is no miracle cure.

[foffee11]

Can anyone share some exercises

[february]

Dear Neta, Interesting, but my neurologist holds the same view as your PT. He has always told me to exercise for strength and balance. He say's there are some positive studies with rodents that have made new neural pathways in their brains with repetitious exercises. My neurologist state's the key to this is to keep is to keep challenging yourself. For example, I bo a balancing exercise at the ledge between my kitchen and family room. I stand on one leg (next to the ledge, in case I have to grab on to keep from falling...,ha!) for as many seconds as I can. Then I do the other leg. I'm up to 30 seconds, where as when I started a few months ago I couldn't even do 10 without nswaying to one side and having to grab the ledge. I keep trying to do more. So my belief is there's something to what your PT says! Although not easy, I try to keep a positive attitude about my ataxia. Do I think I'll cure myself? No, but improve my abilities. If you don't use it, you lose it, as ataxia is progressive, at least in my case! My best to you...,;o)

[ConantheLibrarian]

I saw a physio last year and he told me do various balancing exercises such as standing with your feet next to each other, standing with one foot in front of the other and turning round 360 degrees with as few steps as possible. In the past I have also been advised to hold onto something while balancing on one leg. Personally I don't feel these exercises did me much good. My experience over the last five weeks has been that the first thing you need to do is really focus on strengthening your legs. If you look at walkingwithataxia.com/to-mo... it explains how to do squats, which you can do holding onto something and leaning back against a wall. If you are going to try balancing exercises you first need to feel stable on strong legs. I'm sure this is true for people like me who spend a lot of time sitting down and I would have thought it would be true for anyone with ataxia. After all your legs are what hold you up so shouldn't you start with them?

[Amynah]

Thank you for all your answers.

I will certainly look in Walkingwithataxia.com

The only thing I can add to all this is that in the past 2 years, I have had 4 physio therapist and each one sings their own song - so you can imagine how confusing that is - Everyone gave me different exercises to do and 24 hours are not enough to do them all.

I sometimes wonder if the neuros and PTs want to make us exercise junkies - They know that we all suffer from leg muscle weakness and hand coordination - So why don't give us the exercises for that.

I wish Ataxia.org.uk had ONE list with basic exercises to help us.

[Pec2884]

I have MSA. I have not truly accepted it. I wish I knew how. My neuro is up front about there being no cure but was encouraging when I told him I was going to bio kinetics for an assessment and a training programme. The sense of well being after a training session is wonderful. The encouragement and support at the clinic is so positive. I am in control of my body at the sessions and for a while I forget the course the MSA will take.