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Hi,
I am sort-of new to this forum, but I have a question I haven't seen addressed- if it has been, will someone point in the right direction, please? I was diagnosed with SCA 6 five years ago, although speech problems were present for a few years prior. I've always been something of a klutz, so all stumbling was attributed to that. Anyway, ten years ago I moved from the east coast of the States to the west coast of Canada. In other words, family and old friends are there and I am here. Not that I'm complaining (too much); when I was diagnosed I ended up the patient of a neurologist studying SCA 6. I moved to Victoria, BC nine months ago and am starting to feel "at home" here- it's a good place for people using walkers. I'm doing fine now, but it is living alone in the future that freaks me out a bit. So, my question is this- how are others who live solo doing? What are potential problems? What are things you wish you had done differently "if I could do it all again"? Any and all advice is welcome. I'm slowly setting up a small support network here.
Thanks,
Sherrymo
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Sherry,
Tammy Schuman has the same ataxia you have and just recently bought a trike. She loves triking becuase it gives her a freedom of movement.
Here is a website on trikes. http://www.getitbent.com click on trikes. The one she got is a Greenspeed GT3. |
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Response did not go thru...oops!
Am in your situation.
Have tho't I would eventually put myself in a ritirement center to become a caretaking facility for me.
Where is the issue. The reality is the residents become your friends...many of mine are leavving this world for another. It is a reality check!
IF WANT MORE DIALOGUE ON SUBJECT, EMAIL akellyatrgv.rr.com SOMETIME.
Ann
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Hi Sherrymo ...
Thanx for addressing this subject. I'm in a simiar situation and am strongly feeling a lack of "community". I feel that church attendance often provides community, but I fall short in this area. I have seen programs advertised in the local paper addressing "living with chroic illness" ... but have not yet followed up on the ad ... but now I will. I've even thought about placing an ad in the paper seeking other folks who would like to explore creating community as a sort of "second journey" .. but again haven't followed thru. So ... I'm not providing answers to your dilemma ... just comiserating ... and feeling that there are a lot of us out here struggling with this issue. Ogie |
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Hi Ann,
I'm definitely interested in more communication. Is your email address <akelly@rgv.rr.com>? Thanks for responding.
Sherry |
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Hi Ogie,
I am the same way- some days the lack of community is especially strong; often that is when I'm feeling more fatigued than usual and the thought of getting my walker into the car is more than I can do. I live in a walker and scooter friendly place; we have a lot of older citizens who walk and drive slowly, so driving is still an option. I miss, though, the days when I could just get up and go and didn't need to think. I don't know about others, but that's how it is when I dream; I speak, sing, move as I used to. As with everyone, I miss that.
A few days ago I found out that my apartment building is unable to accomodate scooters (the building was built in the fifties), and even the apartments on the first floor have three steps leading to their doors. Luckily, I have time to find another place, but it is a pain. |
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Yes to Sherrymo.
Ann
I am tired most days just coping from day or days gone by...
That works against a lot that I would do....it is not indifference to many social possibilities. You may face the same.
Ann
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Yes to Sherrymo.
Ann
I am tired most days just coping from day or days gone by...
That works against a lot that I would do....it is not indifference to many social possibilities. You may face the same.
Ann
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Ogie'
You sound just like me. I am checking out scooter to get my mail and drive aound out doors in neighborhood, do the same in car to get out twice a day. still can drive, but I do so carefully.
...same with dreams...I was just getting ready to risk sharing with folks. Same with thinking...by time I slow down for speech, have just about forgotten thinking...hard for normal folks to understand...hard for me, a quick, humorous thinker!...sponteneity all gone whereas now must anticipate things in planning.
Ann
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I recently got this info from internaf, it may apply to you.
'A group in Vancouver BC, now forms the Western Branch of CAFA (the
Canadian Association of familial ataxias) Claude St. Jean
Foundation/ACAF (Association canadienne des ataxies familiales) -
Fondation Claude St-Jean.
CAFA's western branch represents CAFA in the western provinces of
Saskatchewan, Alberta and BC and promotes membership and directs funds
to research through CAFA to ultimately discover and support treatments
for a variety of types of ataxia.
They will work to raise awareness about ataxia, clarify information
about the types of ataxias and about CAFA to the western audience,
primarily in English. With an English-only web page (housed on the
CAFA/ACAF site) they will reach out to those living with ataxia in the
west with information, guidance and understanding. Where possible,
they also hope to do advocacy work on behalf of individuals with
ataxia, and/or advocate for ataxians in general in the community and
within the health care system.
While they are not a support group they are happy to refer people with
ataxia in western Canada to local support groups.
A bit about CAFA: Claude St-Jean was diagnosed with FA in 1972 and
founded CAFA. Originally it only supported people and families with
FA. As they became aware of numerous other forms of ataxias it
expanded to include all types of ataxia.'
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Sherry
I don't live alone nor am I sure of the type of my Ataxia. But I do ride a recumbent trike (GreenSpeed GT5) and totally love it! Freedom is good, but the empowerment I get just from a short ride is ... words fail to describe it. I have to be careful when I get off cuase sometimes I forget that I have Ataxia - actually my attitude is so much better after a ride my Ataxia HAS TO BE also! At least I think so, and that's have the battle. Our minds are so powerful! http://www.ataxia.org/chapters/NorthTexas/default.aspx |
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