Meet, Greet, Pictures

Scott & Mary's story

feeds@yuku.com (phatbuns) — Wed, 22 Jul 2009 08:52:04 GMT

Hi everyone! My name is Mary. My husband Scott was diagnosed with OPCA in 2008 at age 49 We live in Michigan. His is the sporadic type. It seems to be progressing quite rapidly. He is BULLHEADED and refuses to use a cane or anything else. By the grace of God he has not broken any bones yet. I thank you for this website & forum. It is (sad) but heartwarming to know that there are other people like us out there.

wilderunn...back again

feeds@yuku.com (wilderunn) — Wed, 08 Jul 2009 06:27:11 GMT

I go through these periods where I'm convinced that I don't need any kind of support and will plow through just fine on my own, but I always end up back on here when I'm needing to find inspiration to carry on...some of the stories people have shared on here make me both sad for the present yet optimistic for the future.
I recently was dropped from a 3 year relationship because she couldn't deal with with my disorder anymore...you know what I mean...people assuming...

Amberlys profile

feeds@yuku.com (aks) — Thu, 28 May 2009 02:15:33 GMT

Hello, my name is Amberly. I live in Texas and I am 22 years old. I found this website about 5-6 years ago, I would read a couple of stories and then push it away, but recently my dad has been getting worse so I thought it was about time I started really reading stories so...

Help in Ontario

feeds@yuku.com (Randy) — Tue, 06 Jan 2009 12:59:33 GMT

Hi my name is Randy and I have been triing to get answers from doctors in london and am not haveing any luck . Dr. Jog at london won't answer even the simplest of questions he just keeps saying I don't fit into the bell . Does anyone know of a doctor here in Ontario that can answer questions about what the doctor has told me could be sporatic ataxia .My family doc said if I could get a name of a doctor that specialises in ataxia he would set up an appointment .Any help would be great...

New to boards

feeds@yuku.com (phillinedion) — Sat, 06 Dec 2008 00:58:11 GMT

Hello, my name is Philline and I just came across this board. I'm grateful to have found something like this since you all know there isn't many people who have heard of OPCA. My mother is coming up on 62 and first started having symptoms when she was around 55. She lived with my husband and I in Michigan in 2004 when her husband passed away for about a year until moving to Arizona where we all now reside. I've been her primary caregiver even though she lives in an...

Chesapeake Chapter Meeting/Picnic - NAF Foundation

feeds@yuku.com (Bob354) — Wed, 03 Sep 2008 07:06:28 GMT

I realize that this is probably too far away to come for a piece of chicken! But the Chesapeake Chapter of the NAF Foundation is holding a picnic and meeting on the grounds of Johns Hopkins University in Baltimore, Maryland on September 20th from 11-3. Here's a copy of the announcement (with directions): On Saturday September 20^th, the Chesapeake Chapter of the National Ataxia Foundation will hold its fall picnic/meeting. This year the JHU Ataxia Center and a number of...

greetings from Scotland

feeds@yuku.com (cemc) — Mon, 18 Aug 2008 05:29:47 GMT

I've been searching around the internet for groups that share symptoms to me. So far my stuff is unexplained neurologically (have had normal MRI and LP and EMG 15 months ago) but I am having increasing problems and about to see another neuro for a second opinion. Walking is bad - wide gait, irregular steps, bounce off walls and furniture, but no falls as yet. Get very tired after only 10 metres or so, and walking slows and gets even more stiff. Frequent balance problems (vertigo...

new, scared and faar away from you

feeds@yuku.com (ancutaRo) — Tue, 29 Jul 2008 16:37:56 GMT

My name is Mihaela i'm from Romania, i'm 23 and my mother has MSA-C. She is 52 at the moment. It all started 3-4 years ago with vertigo. Nobody knew what is all about as her mri's and blood tests available in our country, of course, were normal. Just in this summer at the latest mri an cerebellar atrophy was detected. They say it's about MSA and after i searched a lot on the internet i found out that she has the cerebellar type of this disease because her mainly simptoms...

Olivia (new to forum)

feeds@yuku.com (olivia5721) — Tue, 29 Jul 2008 13:54:32 GMT

NAME: Olivia
RELATION: I have SCA2
AGE: 33
AGE WHEN DIAGNOSED: 25
LOCATION: (state, province etc.) SD
OPCA STAGE: Still mobile and working, cramping in legs, tire easily, lack of coordination

Happy To Find This Forum

feeds@yuku.com (memiller) — Sun, 13 Jul 2008 17:13:55 GMT

Hello,

My name is Melissa and my husband, Nick has been dealing with a series of symptoms that sound exactly like OPCA. Nick is 44 and first began having vertigo in Nov. 2005. By June 2006 he was in a wheelchair and now he only goes out for medical appointments and therapy when he feels up to it. We are currently living in the Atlanta area and Nick is being seen by specialists from Emory. For two years we saw 6 specialists in Nashville. He was tested for a variety of conditions and...

Jace's Profile

feeds@yuku.com (Jace0362) — Mon, 16 Jun 2008 14:08:57 GMT

Hi All,
I'm Jace(nickname),John (realname),I'm 46,I'm realizing now that I've had Ataxia symptoms since childhood.I'm from New Jersey,
and work as a technician in the entertainment field.I've always been what was considered clumsey and at times unco-ordinated.I played
sports ,always having to work harder just to be borderline average.I was socially active growing up,experimenting with things to try and fit in.
Thats what is called "Peer...

ataxia Ukraine

feeds@yuku.com (airtol) — Sat, 07 Jun 2008 05:55:18 GMT

Good afternoon. My name is Anatoliy. In 2005 in Ukraine I was mistakenly diagnosed with multiple sklerosis(MS) In 2006 in Moscow neurological institute I was diagnosed with sca1 by DNA method. I have the following question: there is no information about this illness in Ukraine as I am diagnosed with MS and I am given unnecessary and...

My Daughter, Katherine...

feeds@yuku.com (pennysue123) — Tue, 03 Jun 2008 09:27:57 GMT

Greetings to all...

Name...I'm Penny, and my Daughter is Kat, 15...I HOPE I do this right! LOL!

Age when diagnosed...Kat, 15 years old, May/2008, a mutation was found on the calcium gene, diagnosed w/Episodic Ataxia 2, I am awaiting my test...her Father is deceased.

Location...Ottawa, Ontario

Stage/Symptoms...Kat has shown some atrophy of the vermis on MRI, slight scoliosis, fallen arches, nystagmus, she has episodes that start w/ headaches, eyes...

my sister

feeds@yuku.com (whoamanpower) — Wed, 09 Apr 2008 04:00:35 GMT

my sister leanna, was diagnosed at age ten, after many hard falls and spells of dizzyness that couldnot be explained. shes 30 now, and i was hoping the might be anyone that i might be able to talk to...i was already an adult when she was diagnosed and have watched her decline over the last 20 years with a heavy heart. is there any treatment, any relief for her, any thing to be done to improve her quality of life? she has never matured past that 10 year old really, although i have cried...

profile

feeds@yuku.com (mrsradar) — Sat, 22 Dec 2007 17:02:32 GMT

Hello my name is Carol and I live in PA. I was diagnosed with spinocellerbellum degeneration and ataxia about 3 years ago.
My age is 56. I use a can and do not work anymore.

claudette

feeds@yuku.com (claudia75741) — Wed, 19 Dec 2007 01:04:02 GMT

ok.. i read how to greet myself so here it is i hope...

Name: Claudette
Location: sandy, utah
My mom was diagnosed with msa in 2002 and opca in 2005 i think she is 60
we are originally from michigan but i moved here in utah 3 years ago and she moved to arizona 2 years ago because of the snow!
I am a caretaker not necessary for my mom but i do work in assisted living and nursing homes. i would love for my mom to move here to utah at my work but unfortunately; she doesnt like...

Goodmorning all

feeds@yuku.com (Duane) — Tue, 09 Oct 2007 08:05:58 GMT

Goodmorning all may your day be filled with joy and your life with blessing's.
Duane

Update from 2005

feeds@yuku.com (Duane) — Sun, 30 Sep 2007 00:00:53 GMT

NAME: Duane
AGE: 42
WHEN DIAGNOSED: Around 2003
DIAGNOSIS: OPCA
LOCATION: mich

Sence my last profile my wife has left and I am back on my own.

Aahni's Profile

feeds@yuku.com (Aahni) — Wed, 12 Sep 2007 22:35:16 GMT

NAME: Aahni
RELATION: adoptee who just found out b-mother had Hereditary OPCA
AGE: 42
AGE WHEN DIAGNOSED: haven't been yet
DIAGNOSIS:
LOCATION: Ohio
[mail]marsh_lisa@hughes.net[/mail]

Australasian profile

feeds@yuku.com (wordstoday) — Sat, 28 Jul 2007 22:51:48 GMT

Hi. I've just lost my first try at this, so this may be short.

Female. Born '51 so I'm 56. Diagnosed last year. Brother with SCA further advanced. We don't know what number. He'll have blood tests again soon. He's in Queensland.

Symptoms: handrail hog, 'tired eyes' (- I just found from this forum that it can be an SCA thing. It's true, you do learn things here.) and the most frustrating because not understood by the outside world - lowered ability to concentrate,...