When I started to read this it was mirror of. What I do. Had a stroke in 2010and got Aquired Ataxia. I’m in chair because of stroke the Ataxia shows by whole body shaking but my hands worse and have to use straw because can’t pick up cups etc. I look on this site for tips and ways we adapt. We are all suffering with Ataxia and other medical problems and there is no cure as we all hope.have to learn the best way to live with it. Most docs only know about ears nose and throat if your not happy ask for referrals or say you’ll take it further until you are happy main thing is do as much as you can or get friends to help you.best wishes.kim
Hi Kim. I really appreciate your support. What a lot of suffering people there are. One writes in here, people reply with ideas to follow up, some of which help, but it’s very hard (impossible?) to change the situation and one’s outlook/hope. I don’t know who is more depressed, my husband or me. But whereas he doesn’t do a lot of things because it’s too hot or too cold or he’s in too much pain or too tired or just not interested, I don’t do them out of simple inertia. I wish I could have a good mother to take care of me! (I’m 64).
Hi Mish,
It is difficult to be a caregiver abd you need as much support as your husband. Yes a Mummy would be very nice 
and I gather you do not have yours anymore.
Is there a support group near you? Since my Ataxia was caused by a stroke, I go to a once a month “stroke support group” meeting. It does not seem like much, but usually, these groups are very upbeat. Yesterday, we had a half hour chair exercise session. I thought it was going to be wimpy class, but we really got a good work out. Caregivers and patients participated and we laughed a lot, because no one, even without ataxia was very coordinated…
Sometimes, we just talk, sometimes, there is a speaker who comes to tell us how to get home health care, or how to deal with insurance, how to make our home safer. We usually have a good time.
Since the symptoms of ataxia and stroke are very similar, if there is a group near you, they might accept you. Check it out.
Hang in there, Mish. Keep coming here for our support if you do not have anyone else. Take good care of yourself.
If you are interested, here is a link to two stroke recovery groups. http://strokerecoverybc.ca/contact-us/branch-locations/fraser-region/
Under the map, there is a list of two groups, one in North Burnaby and one in South Burnaby. Usually, occupational therapists are the group organizers and they know about ataxia, because they do encounter stroke patients with ataxia.
If you are not interested, no offense. This is just a suggestion…
How amazingly apropos. The north Bby group takes place at Confederation Seniors Centre, which I know very well since I’ve taken courses there. In fact I’ve just come from there, having picked up a hold at the library. I wouldn’t have thought of the stroke recovery group. I think it would be good for Gerard though difficult, since he’s quite weak and hasn’t been very active. I know it would be good for me though! So I’ll check with him and with the group. Thanks for the great lead, and also for the contact.
BTW we’ll be seeing his GP tomorrow or Saturday. I’ll bring up the movement disorders clinic (which needs a referral) and the stroke group (which doesn’t
Thanks for the update, Mish! Good luck tomorrow.
By the way, even if your husband cannot do much, he might still enjoy the group. Here, some stroke patients come in wheelchairs, some with cane or walkers, some cannot talk or are so "garbled " that they cannot be understood, some slurr their speech, some have lost the use of an arm, or a leg or both, but all are accepted the way they are. It is very uplifting and we all fit in. Some come looking depressed, or grumpy, but we all leave with a smile… The speakers who come at the meeting for presentations always mention how surprised they are to feel uplifted by us…
Very nice. Now Cicina, I’ve never been sure how to pronounce your name. It could be with "ch"sound(s), which would be very nice, or, depending on its national roots, you could have some "k"s or "s"s in there too, but of course only 2 in total unless you want to add some on. BTW my full name is Michele and only a very few close friends ever called me “Mish” so whenever I see it here it kind of warms my heart. My Grandma, who was Romanian, used to call me Michelica (sounding like “eetsa” at the end). One of my friends on the site uses her cat’s name as her nickname. If I were to do that I could be Jacquie d’Oiseau, or maybe des Oiseaux. If I ever think of it when Jacquot our budgie is settled in one place long enough I’ll take a pic of the little scamperooni and post it. Hope you have a lovely sleep and a good day tomorrow.
Bonjour Madame Michelle des Oiseaux! Très joli nom!
My name, Cicina is pronounced with as many " s" s as you want ( ssissina) is nothing but a nickname given to me by my youngest sister who could not pronounce my real name, Christine. I use it as my “nom de plume”. I am French but never heard any French called Cicina… You must speak some French because you spelled Oiseaux properly… Very rare!
Glad you sound excited about a support group. It will be good for both of you.
Have a nice day! Hope it is not as hot as it is here in Georgia. Another 93F day. ! For our UK friends, about 34 degrees centigrade… pfeeewww!
We’re Celsius in Canada too. Chère Cicina, je ne suis pas francophone mais je l’ai étudié 8 ans incluant l’université. Mais je ne le parle pas couramment. Cependant mon époux est né à Québec; il est franco-canadien. Il parle couramment l’anglais avec un accent charmant. Comment est-ce que tu connais le français?