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Ataxia Support Network

About the New Member Introductions category


#1

New members, start your experience here. Introduce yourself and share your story. Let us welcome you


Hi I am Linda
My Story
#2

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…


#3

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!


#4

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.


#5

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.


#6

Hi😊Born and bred in the UK but I would never eat Black Pudding😑
Fish and chips is another matter :yum::wink:xB


#7

A post was split to a new topic: Hello I’m Jackie


#8

I am a pescadarian. And cheesadarian.


#9

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.

Emily


#10

I understand fish. But what is other one🤔xB


#11

Think about it Beryl then slap your forehead.
What would an idiot say if they were desperately trying to be funny?


#12

My forehead must be black and blue :wink:xB


#13

:laughing:So this post…(must be 20 characters).