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Ataxia Support

Hi, I'm Norman

I’m a housebound disabled USA Veteran (exposed to Agent Orange toxins in Vietnam conflict); age 74 and single.
Medically ‘cerebellar Atrophy-multiple system atrophy’. In short I can’t walk freely, have poor vocal cord use and have bladder and bowel problems.
I work with the computer; using biofeedback programs and Adobe Photoshop
CC plus work with the Internet.
Presently I’m studying Vibrational Healing and use of 'essential oils.

Norman

Hi Norman,welcome😊
You seem very ‘techno savvy’, I wish I had the same skills🙂

I realise you may very well know about the National Ataxia Foundation but if not log onto www.ataxia.org

There are links to info of all kinds, including Support Groups. These are listed State by State, it’s another way of finding other Ataxians who would like to communicate online😊xB

xB, Its a big world out there; with lots of unexplored areas. And we
need to examine them and not be locked by old traditions. Locked in a
wheelchair does mean we cannot use our minds as best we can (The Internet
is a big help.).
Yes, I’ve been ataxia.org but I haven’t followed it recently.
Its not skills, merely not ‘sitting still’. I don’t enjoy the old
tradition that disabled persons should sit and rot
This the first day of sunshine following some rain and snow; a chance to
ride me electric scooter.
Thanks for your message. Norman :ox:

Hope you enjoyed the sunshine Norman :slight_smile:

My husband died pf lung cancer from Agent Orange. I took care of him , but my ataxia wasn’t that bad then. I can’t move without my walker and have a electric wheelchair for outside.

Hi Jubie, Sorry to hear of your physical loss; it is a hard feeling but
loved ones are always connected.
I am also dependent on my walker but I am using the electric wheelchair
more. Although it’s nonsense, I think I need to get things done faster.
The important thing is keeping the muscles active. I’ve got an electric
scooter for outside.
A couple is coming to my trailer to put up some bamboo curtains on the
front windows.

    Norman  🐂

exbirdman; the Agent Orange hit me, Glad to have you on the site. I have an electric scooter also, but have just used it at store(when my niece takes me) since I don’t drive. I have not had the scooter a summer, but am going to try and take it out this summer. I live with my niece and her family and they live in the country, Does your scooter go on rocks or grass? I have heard they have to have a flat surface. I have a three wheel, wish now I would have bought a four wheel. I exercise every day cause don’t want my legs to go completely. As it is I drag them some.

Hi Jubie, I leave in a small mountain town in Northern California and
I have always used a four wheel electric scooter. I’ve got large tires and
can move over gravel and grass; I try to stay on roads (paved or not).
Got the curtain up; I made a big goof and only ordered the curtain for
one side.
A good exercise, I read, for us is crawling on hands and knees; thought
to retrain the brain.
Make it a good day. Norman :ox:

Right now there is something wrong with my scooter, my nephew thinks it may be the battery. When the weather warms up and the rain quits I think I may talk to the company about bigger tires, it might be as cheep to get a new
scooter that is four wheels instead of three. I live in Washington state and there is a lot of rain during the winter.
I never read that about the brain but makes since. I will try anything. Thanks

Hi Norman,This is a really good site for information and support.But definitely getting outside is a must.When weather is great I try to do that in my chair.I have ataxia type 7 which has affected vision ,mobility,swallowing,have tremors.I believe that exercising doing what you can helps.Also makes you not give up. Hummingbird Lady

Hi Hummingbird Lady, The cold weather is a psychological problem; its
hard to get moving (by me!) but I like to be outside and run my little dog
(She looks like Todo in the ‘Wizard of Oz’ story.

  I've got CA-MSA, also loosing hearing, smell & taste plus mobility &

vocal cods use.
I worked on a project with the Smithsonian Inst. and use the nickname
Exbirdman. Where did you find Hummingbird?
Thanks for the email. Norman :ox:

Hi exbirdman, I collect miniature hummingbirds and also have hummingbird feeders.Like watching them in the seasons that they come to my home.Watch them with special binoculars.They are my favorite birds.Love fooling with flowers on deck rail.I have a genetic ataxia I have been told.Since I have daughter and siblings that have same disease.The disease I have has affected the optic nerves of eyes.So have to have visual equipment to see. But the hardest was giving up working.Have been in retail for about 19 years.

Hummingbirdlady, When I was on the bird project, we were working with the sea-going birds in the central Pacific Ocean; banding birds, finding migration patterns, collecting bird blood, and doing some behavior studies on a few islands. I put some photographs on 'Google Earth; checkout Johnston Atoll and Kure Atoll.
When I was at Calpine; CA, a neighbor had about 40 hummingbirds at her two feeders; I’m lucky to get six.
I like to work with wildflower photographs using Adobe Photoshop CC, on the computer. In the past, I would take pictures; now I work with them on the computer. Norman :ox:

My husband put me a bird feeder on front porch.Also humming bird feeder on back porch.Love to watch the different birds.enjoying seeing and hearing about the birds.We also like to go to botanical gardens here in Alabama.That was a really interesting job that you done.That is neat about you working with wildflowers on adobe.I can’t see them as well so my husband sends me them on phone so I can enlarge the flowers.