Proprioception under investigation.

My wobbliness when walking is getting worse, as my cerebellum dies off. As it sits across the communication channel from my brain to my body so it is interfering with instructions to move. I have recently started seeing an acupuncturist and we are exploring increasing my proprioception. (How my body knows where it is in space, and using feedback from all parts and senses). My objective is to create new pathways using natural neuro plasticity, but of course this is hampered by 70 years of learned habits! Maybe the external stimulus will help the internal process.

We are also using muscle taping across my back and shoulders, again to promote proprioception. I will let you know how I get on. Certainly my awareness of my wobbliness and the effects of using a walker in the house and supporting myself on walls and furniture has increased.

Nigel

[Klutzy]

I thought of seeing an acupuncturist, but nervous about the pain. Do you feel the needles? Hope it helps you.

[Hidden in reply to Klutzy]

Hi, no pain from the needles as they are very fine. I sometimes feel a reaction in energy at certain points. I am only at the beginning of this process and will evaluate how helpful it is after a couple more sessions as I will need to decide between it and my monthly massage as I can’t afford both.It’s important to have some clear goals before undertaking any therapy, mine is about proprioception and using my brain plasticity to help my wobbliness.

Nigel

[Klutzy in reply to Hidden]

Thanks for the information. I hope you do see a positive difference.

[coat2003 in reply to Hidden]

keep us updated!monikax pricy I know.I cannot a massage, but wld try acupuncture.

[wobblybee]

I find I cope better indoors, I feel safe and it’s easier to see boundaries, but once I set foot outdoors it’s a different story all together. It’s like an assault on the senses, there’s just too much to have to focus on mentally and physically and I easily become disorientated.

[Brommie in reply to wobblybee]

If you have someone living in your bubble, ask them if you can take their arm when you go out, it really helps me.

[Hidden in reply to wobblybee]

Yes outside is full of danger and more stimulus than I can cope with! I only venture out with my electric wheelchair, but once in the gym can cope again.It’s hard to juggle between too little input and too much.

Nigel

[Klutzy in reply to wobblybee]

That’s sounds unpleasant and difficult for you. I hate going downstairs in public. But i have more issues indoors when I bump into to walls. Outdoors I am unsteady on uneven ground. On a crowded street with people, I wobble more when I don’t have a much width to walk.

[ddmagee1 in reply to Klutzy]

Uneven ground is my enemy! I’ve had a few falls, over the years!

[Klutzy in reply to ddmagee1]

Hope you didn't get injured.

[ddmagee1 in reply to Klutzy]

One time I ended up with a concussion, bad forehead hematoma, two black eyes, and a dislocated shoulder! That was the pits!

[Brommie]

Your posts are always so positive in that you never leave any avenue of research. I do cross stitch and knitting each day, these help with my fine motor skills and dexterity. My wobbliness during the last year has become horrendous and certainly hasn’t been helped by lockdown and the winter. I have a three-wheeled trike which I want to start riding again soon, this will give me fresh air and exercise.

[Hidden in reply to Brommie]

There’s so much more to learn about SCA and being a minority condition it’s down to us to push the envelope. Plus focussing on what we can do is healthier than mourning what’s no longer possible. I do woodwork and tend to my bonsai trees to keep my motor skills active.Nigel

[Staggy1]

Hope this helps you. I would like to know how you get on. I had acupuncture but it didn’t work for me ☹️ but it might for you....

[Hidden in reply to Staggy1]

Yes, it’s got to improve my life or I won’t continue it. But it has got me thinking more about proprioception and how to use my top half to help my bottom half!Nigel

[turner47]

I have got the same its horrible

[ww-wibblywobbly]

Will be really interested to know how you get on. I went to see someone for shiatsu years ago and they refused to treat me as they were worried about opening energy paths and making the ataxia progress faster. So I've never approached acupuncture.

[Hidden in reply to ww-wibblywobbly]

Opening pathways is a way to bypass the cerebellum and hopefully use neuro plasticity to help the condition. The degradation continues at its own rate, we can accelerate it by letting go and not taking care of our general health. Be sure to separate age related issues from ataxia as most gps can deal with those. Nigel xx

[ww-wibblywobbly in reply to Hidden]

Oh my the aim is to bypass the celebellum. The body is really amazing.

Please do keep us posted

Xx

[ddmagee1]

I, too, sometimes get very wobbly, and there doesn’t seem to be much I can do about it. It’s not always that way, for me, but, I just keep on forging ahead, and try to not think about having problems, ambulating!

[Hidden in reply to ddmagee1]

Where we focus our attention gives power to what we focus. Therefore it’s better to focus on what works rather than what doesn’t. Keep on keeping on!

[Brommie]

Me too, I hate it! Need to lose some weight, that isn’t helping.

[penelope2]

Your post is so positive. Keep on being motivated it can only help to slow down or stabilise progression of ataxia.I wonder if you have tried a nutrition approach too. Going gluten free maybe?

Best wishes

[Hidden in reply to penelope2]

Hi, I do feel lighter after a gluten-free meal, but have given up my cooking duties to my wife, so I eat what I’m given! Usually healthy and cooked from fresh ingredients.I must admit a reluctance to give anything up as much has been taken away by ataxia.

My focus now is on what I can do using my undamaged intellect and my knowledge of so many fringe therapies to push the boundaries of what’s possible.

[ninotchka in reply to penelope2]

If you do. not have gluten intolerance then going totally gluten-free makes no sense.

[penelope2 in reply to ninotchka]

There is much evidence to support the negative effect of gluten on the nervous system. Peripheral neuropathy being one.Unfortunately most hospitals do not have sensitive enough labs or the knowledge to test for gluten sensitivity and even coeliacs can slip through the net sometimes.

Anyone who thinks gluten could be effecting their ataxia will soon feel a difference if going gluten free. But a word of caution. You need to be absolutely sure that you need to 100% cut it out of your diet.

It cannot be a half hearted approach!

[ninotchka in reply to penelope2]

I can only testify to my own experience. I went gluten-free for 9 whole months and the only difference was that I was frustrated. I spent tons of money on alternative flours, and tried baking with them as well. There was NO discernible difference with ANY of my symptoms.

[penelope2 in reply to ninotchka]

Did you have a comprehensive test for cross reactive foods?Many foods mimic and react like gluten to the body. We are all different so this can differ from person to person.

Also it is important to reduce your carb intake generally.

But maybe you are completely OK eating gluten?

At the end of the day we are all searching, grasping at straws even, for anything that may help ataxia progression.

Keep positive.

[ninotchka in reply to penelope2]

Hi, and thank you for your comments Penelope! Yes, I am totally fine with all things gluten. I am tall and quite skinny so don't worry too much about carbs. I am always conscious about balancing what I eat, in terms of fat, sugar, carbs, and protein. I have muscle and am not fragile. I love being an omnivore, although I concentrate on fish and plant proteins. My neurologist advised me to reduce animal/red meat protein, so I did. I believe I have a speedy metabolism. Well, I DO go on, don't I?

[coat2003]

Nigel all the best wishes and do whatever helps, but never quit!I suffer from sca2.but had proprio probs since birth.Mainly when I was in London, wld meet up with friends Leiceaster Sq. concrete bank and I was always late, stood infront and kept missing it, as IF KEPT CHANGING. it changed place. This is a direct description and NEVER LEARNED TO DRIVE. I had a few sessions of physio measuring my ability of muscles.if losening or NOT. thank god all well individual major muscles, they measured resistance and that was fine, overall balance however is crap.as I am a widow, got used to a walker, when my hubby ok, leaned on him going upstairs...now shall see if cannot lean on anybody, but prefer my walker.just to make you laugh, a part of it was darts throwing exercise, all my darts went NOT ON A DARTBOARD, but a nurses hand bag, her clasp on it metallic.probably still getting darts out of her handbag:)humour,n humour. otherwise wd crack.I was diagnosed 4 years ago, by mri scan AND GENMETIC TEST, my scan showedd a prune like cerebellum, what's worse my bro has the same I am 44y.old He is 47, but his is much less, lesions ont total degeneration. But hey I keep saying, can live with ataxia, those with cancer not always lucky like me SO IN SCHEME OF THINGS ALL GOOd!

[Hidden in reply to coat2003]

Thanks for your good wishes. I think regardless of our individual flavour of sca that life is liveable as long as we focus on the positive things. A sense of humour is vital, even though some people don’t always get the joke! On my way to the gym I pas a vet surgery and there’s often a small queue outside. The other day I stopped and said to the queue, “last week I came past here and there was a lady with a piglet on a lead. She said it had a nasty sore on it’s back. The vet was very good and gave her some oinkment!” Stunned silence and then they worked out it was a joke. As I was in my wheelchair wearing my frog hat it must have been a bit surreal for them.Nigel

[coat2003 in reply to Hidden]

congrats.That lady sounds like my grandma. Small piglets indoors in her bathroom, and the vet, let's go to piggery. and she asked: What for? she was a fab woman. that's good you can still work, I AM DISABLED, at home, but working from home...my other part of brain works too well, not suffer too many fools gladly:)mx actually none.

[PatsyIpswich]

Regrettably, I missed this post of 2 years ago. How are you getting on?Patsy