Wen here, trying to get sorted out

hello to all

appreciate being in community of others dealing with movement disorder and the challenges that go with it. sorry anyone has it, but support is helpful to us all.

have struggled majority of my life with health issues - got dunked in the polluted part of the gene pool maybe? have list of challenges, lucky can type for now.

the more I read and research movement disorders, the more is understood why docs are so stumped. am fan of using natural means when possible for health but open to western medicine if helpful. tend to react strangely to pharmaceuticals, and careful is needed. symptoms of myoclonus, dystonia, parkinson, ataxia, and complicated by spinal issues. rapidly progressing.

hope to be able to ask questions when concentration is better and they come up. waiting to get in to movement disorder specialist at a teaching hospital. last one was a wash out. had never seen anything like what I had going on. docs are human too, some welcome the puzzle and go at solving it, others ... better with more cut and dry patients.

while playing waiting game, anyone have advice for self helps that have worked for you for daily living? Would be greatly appreciated.

hugs, perplexed

Hi Perplexed!
I have issues with concentration so I applaud you for being able to focus enough
to post this.
It’s difficult to self help when you just cannot get your brain in gear anyway.
My mind is inclined to flit around like a butterfly, making me easily distracted.
I’m in favour of doing anything that relaxes you and makes you feel good, no
matter how trivial.
Exercising can make you feel good but being practical, it’s just not possible for
all of us, is it?
When I can concentrate I like Suduko. Reading was always a passion but
now I find myself skipping passages and unable to focus on the story.
Sorry, no mind blowing advice but I’m sure other people will contribute, watch
this space! xB

As there are different types and degrees of ataxia, exercise can be problematic for some. I use a cane when I leave my home, but am able to walk (carefully) in my home without it. Therefore, I do exercises for strength and balance, which help me. My balance is highly compromised, so I must hold on to something when I exercise standing. I do a lot of floor exercises (can't fall) using light hand and ankle weights, as well as yoga and pilates moves, as I find stretching is helpful. I also have a peddler that I use while seated in a chair. Although everything I do takes longer and is a huge challenge, I find my body moves better if I keep active/moving. Also, eat as healthy as possible. Lots of veggies, fruit and unprocessed food. ;o)

Hi Perplexed, I have many issues; and two were mentioned here: I struggle with focus and balance.

Regarding my balance issues, as Rose mentioned, I do floor exercises and seated exercises. I also use an adult tricycle in warmer weather. Indoor exercise - like at a gym, the Nu-Step worked for me as well as any of the machines that are seated or that I can hold onto.

Regarding focus, I’m finding that meditation is helpful for me. It’s also helpful for stress reduction. Here’s a link that gives an overview of mindfulness and gives a guided meditation.


Also, Beryl mentioned reading. I’ve found that books on audio/mpg/CD work well for me. These are free if you check them out of your library.

Also, you might want to check out Dragon software which would make typing “easier” to communicate and to be a part of this community. It’s basically a head-set that you speak into, and it types it for you. I actually taught this at one time, and this guy who still teaches informed me that the version I taught was no longer in existence…so that was a wake-up call.

Hi Glitter on Butterflies, Just wanted to say I LOVE the Nu-Step!!! I used one recently at a wellness center. Found out by the trainer there that it was invented by a doctor from Ann Arbor (a city not far from where I live in Michigan) for his wife who has MS. It's a great machine! ;o)

That sounds very familiar. It helped me regain quite a bit of muscle-mass.

For a short time and forever ago, I lived and worked in Ann Arbor. Fun town!