Yes its been many years since I have driven, thanks to my wife and family
who help me going out. I am not one who is comfortable just staying in and
not venturing out. On nice days my Son will take me on short walks around
the neighborhood. I will take advantage to run to the store or every once
in a while dinner. I get to push the cart around when shopping, it gives me
a break from the cane. I am afraid it wont be to long till I will be in a
chair or scooter so I want to enjoy while I can, although I dont think it
will keep from going out when that time comes as long as I have
transportation, just try to hold me back. Is it hard to get use the scooter?
I have been blogging about SCA in the context of my mobility scooter for about six years. It has made a big difference in quality of my life as an Ataxian. Iāve tried to tackle only one issue at the time (depression, suicide, incontinence, driving, etc. Read if youāre interested.
http://schumant.blogspot.com
I have had ataxia for over 29 yearsā¦although I have had eight MRIās, EEG, EKG, Holter monitor, spinal tap, inner ear tests, been to a neuro opthalmologist, ā¦you name it, Iāve had the testā¦in three different statesā¦without a formal diagnosis. I have been pricked, ex-rayed, examined, more times than you can imagine, and thru my own research, I self-diagnosedā¦
I have nystagmus, the typical wide gait, canāt carry a cup of coffee without spilling it, and my once nice handwriting has been reduced to childlike print, and a scribbled signature. I fall on occasionā¦I mean I suddenly just go downā¦in slow motion, Iām toldā¦
I am thankful that I donāt have slurred speech, and that, for the most part, I walk unassisted.
I want to be able to wear heels again, to go dancingā¦and I do not like conventional medicineā¦I believe that God gave us everything we need to survive, and that most diseases are caused by manās destroying the natural elements and turning them into deadly chemicals, hormones, pesticides, pharmaceuticals,ā¦I could go onā¦
I have done tons of research on ataxiaā¦all forms. Mine is genetic, cerebellar.
In my arsenal of weapons against this condition, I take turmeric curcumin, 1500mg/day; vitamin C, 1000mg, vitamin d3, 3000mg, magnesium, 500 mg., vitamin b12, 5000mg, vitamin b complex, 200mg , bone broth, 2 tablespoons.
I will be adding CO Q10, 1200 mg/day.
That being said, I need to increase my amino protein intake, I am deciding how best to do that. Additionally, I will be eating 3 organic apples a day, because Iām to understand that doing so may improve my balance.
Also, more Organic fruits and vegetables to cleanse my system of toxic metals, less protein from meats.
In addition, exercise to strengthen my core, my balance, and general strength will become part of my daily regimen.
Since most people think Iām crazy to avoid doctors and medications, I will report back periodically with updates to my condition.
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this sounds just like me although I have been given presumed diagnosis of idiopathic cerebellar ataxia. I was born prematurely although I cant remember how much. My neurologist has asked my GP [UK] to request my medical records from my birth in 1942 but as this is before NHS, it hasnt happened.
I am told I probably had this from birth and on reflection I think I did struggle with balance but hopefully eating healthily and exercising has helped me stay mobile till now. I cant stand unaided unless there is something stable nearby to fall against so I use a rollator but my speech in unaffected. I have a slight tremor. I am now attending gym once a week for resistance muscle training and added to what you mention, I take lethicin and amino acid.
_I have no idea if my Ataxia was due to heredity or if as the neurologist believe may be due to immune system (I have SLE). No matter which of these caused the Ataxia, I must deal day to day with that reality. It is what it is. It is an adventure I am presented with each day be it talking or trying to move about without falling.
I relate to most of what folks have posted. I also relate to the issues of problematic access to all types that ānormalā people take for granted in pubic space.
While across the USA there are strong laws for the disabled and I appreciate that fact many business make the very best effort to follow the laws of the land I assure you that they do not go beyond requirements in law.
I totally agree. It is what it is regardless if itās hereditary, acquired, unknown, or whatever. I guess we have to grateful we live in this country and at this timeā¦
Donna Cappella
ā ā ā ā ā ā ā ā ā ā ā ā ā ā ā ā ā ā ā ā ā ā
Hi,
I am in the Biohaven study. I must have gotten the placebo, because I see no change.
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I am sorry. Are others improving?
I phone
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Everyone this board should write to WhiteHouse.gov @
https://www.whitehouse.gov/contact/
To President to expedite the FDA process , it takes good 8 to 10 years before drugs makes to market, for us ataxian every second counts.
If they get 100 emails it might make punch.
My 2 centsā¦ ( total 8 members in family / 4 are alive)
Iām sorry. That must be so disappointing .
Trueā¦ its like catastrophe, We are broke, financially, emotionally, mentally and off-course physically
As advised, I used my email address as user name and entered PW. But it did not open. I used the option of FORGET PASSWORD. They replied the email is active and we will send the password in email account. This option I had used earlier also, but there was no solution to be problem.
I am receiving emails in my email account from āLiving with Ataxiaā members, and in one of the emails I used the option of REPLY TO THIS EMAIL TO REPOND. And in reply I contacted you. Your emails I am receiving through my email account only. I am not able to login through website.
Regards,
After I used the option of FORGET PASSPORT, the group sent me the option to reset the password through a link. It worked and my account got opened. But when I log out of the site and tried to again reopen the account, a message appeared YOU CANNOT LOG IN AS VICTORY FROM THAT I.P.ADDRESS.
Hi,
I have been on bhv4157 for about a month. I must have gotten the placebo because I see no difference.
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Mommaroo you sound like me. No definate results after 17 years but presumed SCA and more recently presumed SCA 6 from one of the countryās top researchers. I went for exome testing at UCLA and the results are back but canāt get them til my doc calls. There isnāt any effective medication for this so Iāve gone your route with lots of different vitamins and minerals and exercise which seems to be the most effectiveāuntil now. Dr at UCLA prescribed a compounded drug called 4-aminopyradine and it is helping a lot. I have nstagmus and this is where I see a difference and Iām even climbing ladders! Well, I bought a really good stable platform ladder and have been doing much more this summer than ever. The additional movement is making me stronger. Since you are taking magnesium, check iut magnesium Lātheonate. Iāve just started this. Itās for the brain.
I walk with a stick which has given me back my confidence - crossing roads was really scary. I have eye problems too, as well as stiff painful legs and a slight tremor, which is getting worse.
Luckily SCA6 progresses slowly. I saw an ataxia specialist in London who said I should do pilates to strengthen core and stretch stiff limbs. Iāve been doing it for a couple of months and it really does help, with balance and stiffness. I also do qi gong - like tai chi but more suited to ataxians.
My mother, my grandmother and my sister all had SCA6 and no Dr told them to exercise. I hope to keep mobile much longer than themā¦
Hope you do too.
Polly
----- Messaggio originale -----
Hello Polly,
I am a Britsher living in France, I an 71, I aso have sca6, same as my mother & her father.
Fiona
Message du 15/06/17 12:03
Copie Ć :
polly
June 15
I walk with a stick which has given me back my confidence - crossing roads was really scary. I have eye problems too, as well as stiff painful legs and a slight tremor, which is getting worse.
Luckily SCA6 progresses slowly. I saw an ataxia specialist in London who said I should do pilates to strengthen core and stretch stiff limbs. Iāve been doing it for a couple of months and it really does help, with balance and stiffness. I also do qi gong - like tai chi but more suited to ataxians.
My mother, my grandmother and my sister all had SCA6 and no Dr told them to exercise. I hope to keep mobile much longer than themā¦
Hope you do too.
Polly
----- Messaggio originale -----
Visit Topic or reply to this email to respond.
In Reply To
maryseas
June 15
Mommaroo you sound like me. No definate results after 17 years but presumed SCA and more recently presumed SCA 6 from one of the countryās top researchers. I went for exome testing at UCLA and the results are back but canāt get them til my doc calls. There isnāt any effective medication for this sā¦
Iām British living in Italy 
----- Messaggio originale -----
Scooters are often available for Hire at shopping centres.
It would be an opportunity for a 'test runā
xB
Unlike most people, I donāt believe I went to sleep normal, and woke up with this problem. At 42 years of ageā¦I believe something triggered itā¦and I have spent the last 29 years researchingā¦I keep going back to our water and food supplyā¦how does it go?: "Patient,cure thyself!"
Well, Iām working on it, and will never give up!