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Hi My name Angelia I am 43 years old. I have two boys ages 17 and 14. I am divorced. My nightmare started in 1999. I found on I had a boney tumor on my skull I have a plug plate and six screws on my skull, the tumor was none cancer. In 2003 the dizziness started and the off balance. In 2008 the seizures begin. All the meds I was on I couldn’t take it any more. I traveled to Arizona Burrows neuro Institute, in 2010 Waste of time and Money so I still take all these pills. So I tried a new doctor in Colorado Springs CO. He said all my problems was from Ataxia. I am not able to do much because from 2010 I just sat in a chair and gave up, I don’t have much family members to help me so now I have a CNA and a Nurse and a personal care worker. I walk with a walker after 5 mins or less I start shaking uncontrollable and in so much pain. I have other health issues to much to list but I feel this isn’t much of a life to have and hope to met new friends. Thank you for all your time everybody…
Hi, I’m Mazy from Halifax, UK. I have SCA unknown number no family history and no proven genetic link so far. Hoping to find support groups in U.K. For help as I get worse - currently use a stick but dressing is getting harder… Also portable wheelchair for distances helps. Find people are usually very kind when they realise I have a disability, so glad I finally ‘came out’ as disabled!
OMG I found the edit pen! Thanks moderators. My reason to edit is because my intro wasn’t really. I live in Salem, Oregon. (There is going to be a total eclipse of the sun in August for Salemites as we are in the band.) Off-topic, sorry. I am a retired medical transcriptionist with heredity type ataxia. I know this because I have an older brother who is an obvious sufferer. And I have had multiple MRIs showing a shrinking cerebellum. I walk outside with a cane or my snazzy new Rollator. My emotions are upbeat because 1) bupropion and Zoloft; 2) I accept my situation; 3) I have a younger very adorable husband; I can still paint and garden; 4) I’m 68 so I feel I’ve had a long time compared to so many others. I’m going to include an example of a painting I did. Indulge me.
Hi Mazy. I’m pleased to meet you. I noticed when I use my rollator, people seem to jump out of the way and it’s almost embarrassing how sensitive they are to my disability. So I second your comment. My hubby is from Mickleover, Derby. He just returned from visiting his 87-yr old dad as well as traveling England, scarfing black pudding and fish & chips on his journey. He was a real tourist. He hadn’t been back for nearly 30 years. We’ve been married almost that long. I never could have kept up with him.
Hi😊Born and bred in the UK but I would never eat Black Pudding😑
Fish and chips is another matter xB
A post was split to a new topic: Hello I’m Jackie
I am a pescadarian. And cheesadarian.
Hi Angelia. Your difficulties sound cruel and horrible. I feel bad for you. Reminds me it’s not just me that got a bum deal.
Your picture is so pretty by the way.
I understand fish. But what is other one🤔xB
Think about it Beryl then slap your forehead.
What would an idiot say if they were desperately trying to be funny?
My forehead must be black and blue xB
So this post…(must be 20 characters).
Hi. My user name (new) is ErgoSum, or OrNaught_8, and I have been a caretaker for many years for my wife of 49 years. She has genetic SCA, and finally had to move to a 10-bed assisted living house 2 1/2 years ago because I could no longer catch and retrieve her from falling. We had determined that she had no working reverse gear, without falling. She insisted “hey, I bounce well”, but after multiple incidents and other symptoms worsening (speech, swallow/gag, impulsiveness, denial/drama, car accidents, and general “it’s not me, it’s you”) the family assembled and she moved to the first attempt at assisted living. She is in her second facility, age 69, no speech, dysphagia diet, weight loss , but still has some strength to assist her caregivers somewhat. No pain, regained some eye muscle control, recent TIA. Hears like a bionic woman. One day at a time. Would like to share experiences with other long-term caregivers.
Half my life that I have been frustrated with myself. But 7 years ago a neurologist found out it’s because of Genetic Ataxia. Anyway. I’m happy to find a group of people that probably can understand this condition. Any suggestions what topic I should definitely look at?