Dear Marie
It seems such a short while ago you were advising me on rollators and buggies. It saddens me to hear how you are at the moment. Could we be Friends? I was going to ask you a while ago and didnt. You told me about getting out and about and that things werent too bad. And now this. Is it SCA or Freidrics? please stay as cheerful as you were a little while back. The whole thing is shitty but I would love to stay in touch with you.
Love and light
Sarah-Jane
I love your comments, Sarah-Jane! How to fall and weight transfer are 2 biggies. I have been practising Taoist tai chi for 6 years and I am sure that the abilty to deal with weight transfer has prevented me from falling countless times. I too was diagnosed many years ago but only 20, not 40.
Susan
Sarah-Jane Squire said:
Hey obladi
Sometimes its easier to meet ataxia head on. Ive always been a showoff so it has been hard at times - no demure little old lady I fear. But the good news, for you and me, is that it was diagnosed by chance over 40 years ago. I'm still here! Learning how to fall (sounds weird), how to transfer balance and making the most of all the aides available to you is of paramount importance. Physios these days have had training in exercises etc. for clients with ataxia. Social Services can make your life more comfortable with things like shower stools, raised loo seats, bath aids (to get you in and out of the bath() and grab rails. Your GP will put both in touch with you.
Ive had my hair dyed a spectacular red and wear the ataxia tee-shirts which read on the back 'Im not drunk, I have ataxia' So you see if people want to look at me, Im there in all my glory!!
Dont hide your symptoms. You, and all of us with SCA, are very special
love and light
Sarah-Jane
ps: and do keep in touch with this site xxxx
I used splints on hands/forearms as my hands flexed a lot. Wearing the metal splint part over top of hand added a little weight and stopped my hands flexing so much, it made it just as difficult to self propel a chair though and do stuff with restrictive splints on.
I found out quite by accident that exercise helped particularly passive exercise where a machine is moving my arms and legs for me as this activates a different part of the brain to you moving you limbs yourself like to pedal on exercise pedals. It has reduced my involuntary moments so doing other things myself is easier as I’m not battling with my arms wanting to move one way when I want them to move another!
I also tried gluten free but it did nothing for my ataxia and mine was getting worse I had a big electric chair last year that reclined cos I couldn’t sit for longer than an hour without back muscles going into spasms, that has now gone. I still need wheelchair but reduction in symptoms means I can sit in it longer and manage to self propel if surface is flat and smooth. (like supermarket/shopping centre) I still need powered chair for outdoor terrain, but getting about the house by sitting on rollator seat and push myself backwards with my feet… last year this was not possible.
For me it is to some degree important to hide my symptoms in regard to other persons, especially those with whom i am not in close connection. So i did not change my Facebook Profile foto which has been taken 2 1/2 years ago. Weight loss, changing of the colour in my face (now sort of grey) make hesitating me to change my picture. I have become an old woman, but i am not so old as i look like no. Finally i got some nice fotos, taken by a friend of mine on a little trip in Austria this summer. And these fotos i will try to get adapted, if possible, to the right size of uploading them to FB and also to this forum.I would not like that you would see how i look like actually.
Of big importance is for me to try to finish the symptoms or getting them fewer, milder...
In the last few days there was much improvent for me in this regard, - thanks to this forum!!
So i have changed my way to walk. With some changes incorporated now, i am able to walk without crane (but with a carrier for my things when i go outside). All the trials to learn this again where in vain or not sufficient enough, before i entered this forum. A few recommendations, which fitted in my gap of understanding mad the difference...So i think that not necessarily your condition will deteriorize in the near future, but instead improve. In the longer view maybe it will become worse, depending on your diagnosis and your personal development. As i read in studies/reviews, the genes do not have that impact that they determine everything in your disease. Its very much you with your coping strategies (and the help you can get). So looking back on my walking problems i realized, that i have brought myself into dangerous situations (falls) and desperation unnecessarily. But its so difficult to know everything in advance, and only a sort of breakdown brings us to look for help of others, sometimes. In my case it were the breakdowns which finally improved my living qualities.
Wishing this also for you,
Kind regards,
Margarete
What i have learned: Not to step sideways. Not to do big steps. Not to go too fast, but instead slow and with control. Walking with some concentration to the area that lies in front of you. Not hopping to other phantasy-contents while walking. Having your look somehow fixed in the direction and distance similar to this in the Zen sitting and Kinhin walking position. Sitting meditation. Yesterday i was sitting in the morning for 3 periods, and walking "kinhin" in between. I felt this would be one important solution to my actual problem. The energies are actually very much spread out over the whole body and not really under control. But after some time this starts to happen. In the extreme case, i think, i must enter a sort of zen monastery to concentrate on sitting, walking, doing work with my finger/hands, in silence and concentration, but with recitation and chanting. Food without Gluten. Normaly people recommend that you should sit for half an hour on the morning as well as on the evening. In my case and in the case of worsening of my symptoms, this could be necessary for several hours. I never started with a regular zen practice, in spite of the fact that i knew the technique and also have participated in a zen - emaillist since 1999. But to tell this , the whole story, would be to much for this thread and would be somehow offtopic now.
Not realizing/knowing and personal obstinacy have been my own failure in the regard of my gait disturbances in the past 1 1/2 years. If i would have stopped at one point - e.g. after having realized that i experience slight problems with my balance and have tried to analize my movements and do correction on it - perhaps this would have helped. But with obstinacy i did the same mistakes again and again, except my adaptation to better shoes and walking aids..
Wishing you a steady improvement, and if this would happen in small steps.
Kind regards,
Margarete
Hi Obli,
sometimes it could be better if you would not be sent to the next neurologist ordinating around the corner. As Ataxias are so seldom, it s better to to go an university clinic.
i did not hide my symptoms in our clinic in 2011 when they first appeared, not to oversee them. I had to use the stick. My doctors refused competency for that- not in the scope of the stem cell transplantation after-ambulance. Finally they sent my to the "normal" neurologist. This was not helpful in result.. But if they would have sent me to the neurologic department in the same university clinic, this also would not have been of much help, i fear, because they are not so common with scas.. don´t know.What i want to hide, are the features of the disease which would not be understood by others and would cause bad treatment for my person. When i have symptoms which seem dangerous it s mostly in the night, and as i am alone in my bed nobody watches. As i share my appartment, there will be at least one other person who could help in case of emergencies..i am feeling a big emotional energy trying to "kill my symptoms", in the consequence of also realizing some death-status where my body does not work much, so that i have time to reflect... I also want to hide symptoms from my children, but this only to some extend. In a sitting position you are in full dignity. Going for swimming with one of my children - not preferred. There is a friend of mine, also somehow impaired, and full with understanding. Perhaps we will go for swimming together next time. Maybe you have also got such a friend available for the wider understanding, outside your family? Meeting her could give you an explanation to you family why you leave them for one or more days....
When you show your symptoms in the public, you become visible with youe condition. There could people come to you and ask you what your problem is, if they could help you somehow, or even offer helpful informations! But with the family it´s another thing to cope with...
kind regards, margarete
Ditto on the Show Off. Love the "spectacular red" idea. I have done many shades of auburn but never had the courage to go all the way. Hah!! you may have just inspired me!!! ;)
Sarah-Jane Squire said:
Hey obladi
Sometimes its easier to meet ataxia head on. Ive always been a showoff so it has been hard at times - no demure little old lady I fear. But the good news, for you and me, is that it was diagnosed by chance over 40 years ago. I'm still here! Learning how to fall (sounds weird), how to transfer balance and making the most of all the aides available to you is of paramount importance. Physios these days have had training in exercises etc. for clients with ataxia. Social Services can make your life more comfortable with things like shower stools, raised loo seats, bath aids (to get you in and out of the bath() and grab rails. Your GP will put both in touch with you.
Ive had my hair dyed a spectacular red and wear the ataxia tee-shirts which read on the back 'Im not drunk, I have ataxia' So you see if people want to look at me, Im there in all my glory!!
Dont hide your symptoms. You, and all of us with SCA, are very special
love and light
Sarah-Jane
ps: and do keep in touch with this site xxxx
I echo a couple of points made by others here.
Get to a Neuro clinic at a university. Take all test results and such that you can gather. When I finally got to Dr. Pearlman at UCLA, they looked at the MRI done 4 years earlier and identified the atrophy immeadiately. It was called normal by the other quys.
Don't hide. People fear what they don't understand. Let your family know and let them help you. You don't have to share everything. But let them know they can talk about it with you. Everybody has some kind of challenge to deal with. This one happens to be ours.
Well said, Willis!!!