Cerebellar Ataxia
 

One of my sisters has been diagosed with this condition that is incurable. It is simply a shrinking of the cerebellum and it destroys motor functions, slurs speech, later on it will not allow her to swallow. They say it is similar to Lou Gehrigs disease. She has been battling it for a number of years until she was diagnosed at the Mayo Clinic this past June. They have no idea how progressive it is; I guess each person is different. She is in assisted living as she wants to be as independent as possible for as long as she can. She is already walking with a walker and her speech is definitely slurred. She has to think really hard to form her words. My heart just aches for her. She keeps her spirits up and has been told she has added a lot already to their community at the assisted living facility. I just wonder if anyone has heard of this condition and if you would have anymore information about it. Mostly its progression. Thank, Cathy

Hi Cathy,

I am so sorry to hear about your sister.

There is one thing I hope the doctors have considered, and that is gluten sensitivity as a possible cause for cerebellar ataxia (intolerance to gluten found in wheat, rye, barley). Some studies say it may be responsible for up to 40% of idiopathic cerebellar ataxia, and possibly even some forms of hereditary ataxia.

Do you know if your sister has been tested specifically for antigliadin antibodies? The reason this is so important is that some people with ataxia and antigliadin antibodies have improved on a gluten free diet. Unfortunately, sometimes existing damage may be permanent, but the progression may be slowed or stopped with gluten free diet. The studies can be found below.

Much of the research on this has been done by Dr. Marios Hadjivassiliou from the UK , but there are others who have found similar results. I know that Dr. Hadjivassiliou works with other doctors who have contacted him, so if your sister's doctors needed to know more in regard to appropriate testing they could try to contact him.

In particular, you may want to look at these articles of his:

Autoantibody targeting of brain and intestinal transglutaminase in gluten ataxia, Feb 2006

Cerebellar abnormalities on proton MR spectroscopy in gluten ataxia, July 2005 - free full text

Dietary treatment of gluten ataxia. Sept 2003 - free full text

Gluten ataxia in perspective: epidemiology, genetic susceptibility and clinical characteristics. Mar 2003 - free full text

The humoral response in the pathogenesis of gluten ataxia. Apr 2002

Clinical, radiological, neurophysiological, and neuropathological characteristics of gluten ataxia. Nov 1998

Gluten sensitivity as a neurological illness. May 2002 - free full text

The Neurology of Gluten Sensitivity: Science vs. Conviction -
Choreic syndrome and coeliac disease: a hitherto unrecognised association, Apr 2004



Also check out these pages of The Gluten File:

The Neurological Manifestations of Gluten Sensitivity

Gluten Ataxia

This may be a long shot~ but I just want to be sure that the doctors have considered this....because it may provide for a glimmer of hope. Here is a page about Diagnostic Testingfor celiac disease/ gluten sensitivity... but I would recommend contacting Dr. H. directly because I know there are other tests he'd likely recommend in regard to gluten ataxia.

Cara

I'm sorry too.

Please do pay close attention to the information in Cara's post. Gluten sensitivity and B12 malabsorption are probably two of the most underdiagnosed conditions, and it isn't dangerous or very costly to cover both.

rose

Thanks, Rose, for the specific mention of B12 deficiency. How could I have neglected to mention that :o ? Vitamin E and CoQ10 deficiencies are also associated with cerebellar ataxia, and googling cerebellar ataxia with any of these should bring up lots of supporting data. Now, one would hope that the good doctors at Mayo would have considered these things, but you never know, and lab tests are not 100% accurate in determining underlying deficiencies. We know from personal experience how often B12 deficiency goes unrecognized for so many reasons. I'd want to be sure I had strong levels of all of these.

Cara

Cerebellar Ataxia
 

You gals are so great, unbelievable really. I heard back from my sister this morning and she as well was so thankful for your kindness. However, she and her doctor, who was part of Dr. Andrew Weil's Integrative Medicine group at the University of AZ, (pretty impressive I thought), decided that more testing was not the right way to go as she struggled with this 3-4 years before diagnosis. She has pages of testing from Mayo so she might have been tested, she's not sure. I'd like to share her words as she really touched me with them, and, I suppose each of our journeys will take us one day to the point where she is: "My body can't take any more uphill climbs above and beyond the ones I already face each day. If I allow my body what it needs each day, my body reciprocates with the best it can each day. We are content with each other -- my body and I -- and my quality of life in Maria Joseph manor is good -- the best possible outcome I believe." So I think we now just hope and pray for a lot of good days and the strength to live the best we all can.
Thank you once again.
Gratefully,
Cathy

Hello Cathy
 

Hello Cathy,
I have no idea where to begin. My name is Linda and I care for my hubby Mike. See 6+ yrs ago my Mike became very ill he was only 47yrsold. At first he lost his sight(back in about 3 min) got a Real bad headache and started to sweat. To the hospital we went after church.They said he had a bad headache LOL. Then our crazy life began. Neuro dr1 said it was in his head and depression, 3 months of that and I was ready to kill the dr.. Neuro dr2 said depression,we never went back.. Neuro dr3 and many more test said Binswanger disease and strokes and gave him 5yrs to live..Then 1yr later said nope thats not it either,migraines and depression.. Neuro dr4 saw him for 1yr and knew if she did not figger it out fast he was going to die.. Our dr contacted the dr the other people talked about in here Dr H. He told her what test to do.. And 4yrs to the day when Mike got sick we Finely had the answer Gluten Ataxia... The wheel chair is in the attic(not the car). No more walker,balance is better. Short term memory is ok.. No more stroke like episodes.. Mikes TTG was 17.1 Dec 2005,, 11.8 Sept 2005,, 11.5 April 2006,,
6.40 March 2007.. TTG is a gluten blood test..It checks for antibodies in your blood.. He is on a very strike Gluten free diet.... Our story was in the magazine called Living Without winter issue(Dec2006)...Feel free to email me.. at mhowell3@rochester.rr.com
Take care ..Linda and Mike

Happily, B12 testing is not necessary. Whether tested or not, and whatever test results might have been, at least 1000 mcg per day B12 (not extended release) should be taken by anyone with symptoms, just in case. It is safe and inexpensive.

rose

Cerebellar Ataxia
 

I haven't been on in a while and was surprised to see more posts here. Thank you most humbly once again for caring and I sure hope and pray that your husband is, and will remain, better. I'm so sorry that people have to suffer so much just to find out what is wrong with them. I would have thought that most doctors were beyond 'it's all in your head and depression'. It makes me see red.

Anyway, just wanted to send blessings and thanks!
Cathy

Spinocerebellar Ataxia (aka SCA)
 

My DH has SCA (unknown genotype). There are about 26 genotypes that have been identified to date, not to mention gluten ataxia. Only about 10 of the genotype tests are available to the public, and he has turned up negative for all 10 of these as well as non-responsive to a gluten-free diet.

Many {{{HUGS}}} for your sister, Cathy! She is a trooper!! My DH is 52 yo, and had to retire last August because he was no longer able to do his job due to all of the coordination issues. In general, SCA causes slow but steady loss of coordination in all motor functions, including walking (poor balance), talking (slurred speech), and swallowing.

To top this off, he's losing his hearing and is not happy about getting hearing aids, to put it nicely. I had to quit my job to help him and it's not going well. We have 2 boys to put thru college, each of whom has a 50% chance of inheriting this disease. I must go back to work soon.

I'm scheduling an appointment at UCLA ataxia clinic. While we know there is no cure, they might have some suggestions to alleviate his depression (and therefore mine!). :(

There is additional information at this website:

http://www.ataxia.org/

There used to be an ataxia section here at NeuroTalk, but it has disappeared, which is really sad because there were some very nice people and I miss them. I hope they are all doing well!

Best wishes,
Louise

gluten free diet may take a long time to have an effect...if ever....it may only stablize the situation....CoQ10 def is also related to ataxia issues, good luck

Hi Ladies...finally got my PM's thanks for those...

The ataxia website will be a great resource for me. She is in PA; I'm in Houston, so I don't get to see her, but I talk to her on the phone. She gets tired very easily and that shows mostly in her speech. She is getting on at the Manor and we (my sisters and brothers) have actually (we think, hope, and pray, ) that we have convinced our Mom to go there too. She suffers with post polio syndrome, which doctors don't really know about - they just say we cured that in the 50's. but we all know it is still around. She just had a pacemaker put in last week, but really no different. She turned 86 in the hospital and they treated her special. So she was happy. This will be very difficult for her as she has lived in the same apt. for over 50 years , but I try and help her understand - she has the memories; she can take them with her. Her sight is bad and she feels that she can feel her way around there, but in assisted living, someone would be there if she fell.

Sorry to have gone on...never know whent I'm going to do that. Was going to put a pic of Pat, but it didnt' work. Thank you for your concern, your knowledge and your caring enough to share what you know.

Gratefully,
Cathy ;)

Hooray for this thread!
 

After browsing here and there on this forum as a new member, after a few days of searching where we might "FIT" , I FINALLY, FINALLY found this pearl thread --- thank you!!:D

I would love to hear more from Cathy and Louise, it's been awhile since you last posted. How is everyone doing??
(Cathy -- I live in PA too, right outside of Allentown -- eastern PA).
(Louise -- Ours is an hereditary Ataxia, too - 'SCA, type unknown' dx. I've tested for some of the commercially available types of autosomal dominants (we have at least 3 generations' worth of affected individuals), but all to no avail as of yet. I have a young son and some nieces/nephews who are at risk of inheriting the faulty gene (50/50), and so I plan to continue with the testing in the future, as it is relevant. Fortunately, I am in the mild stages at this point.

Take care and I hope all is well.

Hi Color and Louise....Cathy here! Lots of updates and different information since last I posted.
Pat is still doing okay, although she feels progression and it is hurting Mom so. Pat is an interfaith minister and she spends her time helping patients and family members who are in the hospice program at her facility. Personally I think she is too "hermit-like" but she does seem content and happy when we talk and so we just pray.

Mom is living with my husband and I in Houston since Aug. and she seems to be quite content. My hubby has been just great and she gets along with him really well. We had both her eyes operated on for cataracts - got new glasses - but the macular degeneration appears to have progressed and so her sight is still pretty bad. We're hoping in time, it will get better. We also saw a fellow who was supposed to get back with us about mounting her shoe somehow to help her foot, but I think and guess he really doesn't have a clue about what to do.

So all is grace and one day at a time is the only thing we can do.

Thanks and hope you are both doing well. I have recently been diagnosed with Fibromyalgia along with the RSD - so I'm learning little by little more of what so many of you are dealing with. My prayers are with you all.
Cathy

Greetings Cathy!

Thanks for the update --
I'm so glad to hear that your sister Pat is living day-by-day with this and doing just fine. And yes, spirituality is the best medicine, all-around. :)

And that's great that you're taking care of your mother -- I'm sure she is forever grateful to you and your husband for opening your doors to her.

I apologize for not knowing, but what is RSD? Since your own particular ailment(s) have surfaced, perhaps you can try to post in a different folder if you need support/advice?

As for me, I'll be going to yet another Ataxia specialist in a few weeks for a third opinion. Fortunately, the progression is going slowly for me: I'm still very, very ambulatory -- the main problems for me right now are balance- and coordination-oriented. Yet they're quite manageable -- moderate exercise and eating well are working just fine, thank the Lord.

Take care, and blessings to you.

Christina

hereditary ataxia
 

I too am glad I found this forum!

I was diagnosed with SCA3, also known as Machado/Joseph Disease in August,2006 after finally consenting to genetic testing. I wonder what you mean by "commercially available types of autosomal dominants." I inherited from my father who was part of the orginal family being tested in this area...(New England) in the late 1960's.

My symptoms of poor balance and poor coordination started when I was 53, I am now 60. Mine is considered late onset and progression is slow. Sometimes I use a cane and need to be very aware and careful not to fall. I just saw the neurologist this week in Boston who is following me and he said there has been virtually no progression since January. Hooray!

He encouraged me to do the exercises I learned in physical therapy to improve balance and leg strengthening. ( I have been lax at this.) He says that new developments look promising in finding treatments to halt or at least slow the progression.

Hope you are doing well.

Ataxia/brother
 

My brother has been diagnosed with Ataxia and has been told by the Mayo Clinic that there is no hope. We have now decided to send him to China for Stem Cell Injections (). It is the only option that we have except for death. This was his choice, and not ours, but we support his choice. We have met others have have gone to China and this has been a huge improvement, not only with Ataxia, but other diseases. There is no way we could do this in the USA.

Ataxia
 

I very sorry to hear of your brother's condition. Has he gone to China for the Stem Cell Injections and if so has there been any improvement?

Do you know what type of Ataxia he has?

Wishing good things for you all.

I hope this helps someone
 

I have Gluten Ataxia. In November 2005 I had what started like a flu. Imediately transitioned into Ataxia. I could not walk without holding on to someone. I had a pull to my left and as I walked arm in arm with someone we looked like drunken sailors. I could not think my way out of a paper bag. Couldn’t find words while talking. I would choke all the time especially on water. My face would swell and in general I looked very bloated. The lower left side of my head in back would swell. I would lose control of my bladder if I exerted myself in the slightest. While sitting in 70 F degree room I would have cold spells where my right foot would hurt from being so cold. I would have 7 layers of clothes and blankets on and it would take an hour or more until I warmed up. My nose was always the hardest to warm. I had blackouts while doing something. One time I came back when I was reaching into the oven to remove a pan without an oven mitt. I would be in the middle of holding a conversation and just stop going off into space. When I returned I had no idea I had vanished and the other person would ask if I was there. Memory was terrible I broke down in tears when I could not remember how to spell my daughters name on our Christmas cards. My writing became terrible and I felt like there were vibrators inside my arms turned on all the time. I had terrible stabbing shooting pains at random in my arms and legs. My coordination was not there. I would fling things and drop them. My vision would get blurry and I could not read. One time I was walking across a parking lot to the doctors office with my mother and a fire truck went blairing by. I froze. I was unable to process the loud noise and walk at the same time.

December 2005 I went to Mayos where their tests did not show the cause and therefore it must be in my head. January 2006 I found a neurologist who was also a psychiatrist. He assured me it was not in my head. He did some good old fashion tests that did not cost anything. He had me sit on a backless stool while asking me questions or having me do another task like tap my foot. He had me clap my hands and tap my feet. Walk in different ways and after many different tests bench marking them against my husband or other willing participants diagnosed me with cerebellar ataxia.

Now he said we need to figure out the cause. He narrowed it down to an autoimmune or virus attacking my cerebellum. He started with the autoimmune and sent me off to a doctor who put me on stuff to calm my immune system. I stopped eating all wheat, spelt, and dairy because I heard it causes inflammation in the human body. I got better in November 2006.

2008 I start having the symptoms come back. I stumble across an article in Living Without on Gluten Ataxia. The wife of the man the article is about has a post earlier in this thread. So I take the article into my doctor and tell him that I am starting to get the symptoms back though not any where near as severe we have to stop the progression. He says lets talk about what we did right before you got better. He reluctantly decides to order the blood tests because if this is what is causing my problems I should just do a gluten free, casein free, dairy free diet now. The blood tests come back negative but I started the diet immediately after having the tests done. I am already seeing an improvement. So he diagnosed me with gluten ataxia. Later we find that there are so many false negatives that the test results do not really mean all that much. We should have did a scope.

Well here I am 100% recovered only better because I do not remember feeling this good since I was 17-24. I ran this morning 1.5 miles. Used my Nordic track for 20 minutes and the total body gym for 20 minutes. My energy is incredible. People notice a difference just looking at me. My stomach is not all bloated. I am still healing as I do not absorb my b12s from my food yet. I have to take supplements for some other vitamins that I am not absorbing well yet. But I feel great!!! Oh, if I slip up and have dairy or gluten (unintentionally) I get a glimpse at my old life and wonder how I did it. There are many document reasons why people with gluten intolerance or celiac have problems with dairy. If someone wants to try to see if this helps them I strongly urge you to cut the dairy out for one year then introduce it again and if you have problems do not eat it.

A great dvd that I found from Dr. Thomas O'Brian Unlocking the Mystery of Wheat and Gluten Intolerance. While securing booths for a gluten free symposium I went to a GF bakery. The owner insisted I watch this video. I wish I had known about it in 2005. My neurologist borrowed this to watch and share with other doctors. I could only find it on Amazon.

I hope this helps someone!!!

Hi, The story in the Living Without Magazine,is my husband and my story.. Yes he too is doing Very Well on a Gluten Free diet.. .. You can e-mail me if you would like.. Linda

Cathy my sister sent me this website to look at (must be a sister thing). I to am very independant and have suffered for 4 years. I have gone to a gym and exercised everyday for a year to correct walking and strengthening leg muscles. Working as a carer. Royal Brisbane Hospitial Drs said to me, see you in a wheelchair. That's when I said to myself no way and joined a gym. I guess its like cancer you don't know the outcome just have to strong and deal with whatever you need to.

Louise, i'm not sure if you get this or it's the right way. I would love to know more as for 4 years I've been suffering in silence with a probable spinocellabellar ataxia as I have had a spinal tap and numerous MRI and CT scans only making it difficult for Drs to diagnose. I exercise learn to keep walking heal toe and see a Occuptional Therapist for writing (which is still literate) Found work, and I am with a Company that know I have a limp and writing disorder, although diagnoses has not been made. My name is Sandy and I live in Brisbane, Australia. Would like to have contact with you and more information. Your reply as soon as possible would be appreciated.


Cheers

Sandy

Chinastemcell.com
 

It's Sept 2nd and my brother is about to leave for China on the 8th of Sept, he has been counting the days. He is in bad shape, cannot walk and his speech is very bad, slurring more than ever. He got to meet a 21 year old girl here in Kansas City over the weekend. She was in worse condition than my brother, went to China and had the Stem Cell Injections done. She is now out of her wheel Chair and is doing unbelievable better. She is now driving and works like everyone else. She is a Prime Example of not giving up or giving in to the people who told her that she was waisting her time going to China, but she proved them wrong. The cost is over 40k, but it is worth saving a life for that amount. We had fund raisers and we collected over 20k, I pitched in the balance of 25k and have no ill feelings about my choice, he is my brother and if there is a chance i will do what ever it takes. I hope anyone with this disease looks into this type of treatment. I know Stem Cell is a bad subject in the USA, but we will not give in to the doctors that told him to go home and die. My brother was told my the Mayo Clinic that has Genetic Ataxia, but I believe it was caused by paint thinner from being a auto painter all his life, back then the protection from breathing the fumes was not good. Paint thinner can be one of the causes of this disease, but what do I know? I told my brother he had Ataxia from the beginning, but his wife and son told me I was wrong and all the doctors said he was mental. It took going to the Mayo Clinic and thousands of dollars to tell him what I already knew from my research. Please say a pray for my brother John , and God Bless all of you.

There is hope!!
 

It's Sept 2nd and my brother is about to leave for China on the 8th of Sept, he has been counting the days. He is in bad shape, cannot walk and his speech is very bad, slurring more than ever. He got to meet a 21 year old girl here in Kansas City over the weekend. She was in worse condition than my brother, went to China and had the Stem Cell Injections done. She is now out of her wheel Chair and is doing unbelievable better. She is now driving and works like everyone else. She is a Prime Example of not giving up or giving in to the people who told her that she was waisting her time going to China, but she proved them wrong. The cost is over 40k, but it is worth saving a life for that amount. We had fund raisers and we collected over 20k, I pitched in the balance of 25k and have no ill feelings about my choice, he is my brother and if there is a chance i will do what ever it takes. I hope anyone with this disease looks into this type of treatment. I know Stem Cell is a bad subject in the USA, but we will not give in to the doctors that told him to go home and die. My brother was told my the Mayo Clinic that has Genetic Ataxia, but I believe it was caused by paint thinner from being a auto painter all his life, back then the protection from breathing the fumes was not good. Paint thinner can be one of the causes of this disease, but what do I know? I told my brother he had Ataxia from the beginning, but his wife and son told me I was wrong and all the doctors said he was mental. It took going to the Mayo Clinic and thousands of dollars to tell him what I already knew from my research. Please say a pray for my brother John , and God Bless all of you.

Dear Rhartn,
Hello, and apologies for not responding sooner. I haven't checked in for quite awhile, but I was very excited to see that this thread got some more recent posts.

Anyway, to answer your question re: my statement about testing -- "commercially available types of autosomal dominants," here is what I meant: You see, since our family's faulty gene has never been identified in the past, my neurologists have been pretty much playing the game of elimination. And even though there are currently 31 types of hereditary Ataxias which have been identified, only about 1/3 of the types are commercially testable (through Athena Diagnostics in MA and a few more, overseas in Germany). Re: the autosomal dominant part, the fact that ours affects every generation (whereas autosomal recessive skips a generation) has narrowed the field down somewhat for us, fortunately.

A variant of "unknown clinical significance" was identified on the KCNC3 gene when I tested for SCA-13. However, when I spoke with a neurogeneticist about this last month, she feels that it may or may not mean something for me/us, who knows? And so the next step, if I want to continue my pursuit, is to test additional affected family members -- and if they have the same variant, then...just maybe...

Take care and here's to continued slow progression,
Chris

Is there an update?
 

Dear kcagent007,
Please keep us posted on your brother's visit and treatment. You are a wonderful sibling to have helped so!

Blessings,
Color

CoQ10, Vit B12, Vit E
 

Hello. I am new to this site. Last year my father starting having problems with vision in his left eye. The eye doctor said it looked like a stroke behind the eye. Just as he was beginning to cope with that his speech became slurred and he would stumble around like he was drunk. He said his leg at times feels like it was not even a part of his body, but rater something heavy to carry around. He said that he is not actually dizzy, but feels unsteady. Also, his speech at times is very hard to understand. This past weekend he had a couple of episodes where he could not talk. Finally, drinking liquids (mainly water) chokes him. We too him to UAMS a diagnostic hospital/clinic. They ran all kinds of tests. They could not find anything. At first they were sure it was Lou Gherics, but then they decided it was a shrinking cerebellum. That too they could not say conclusively without a brain biopsy which my father has opted not to do. I began reading some of the posts here and he is wanting to try the enzyme to see if it helps with his unsteadiness. Plus we are looking for information about the gluten free diet. My questions are, what mg do you take of the CoQ10? I know the results take a while, but how long did it take before you started noticing a difference? Any help, advice, etc would be appreciated.

The patients with ataxia, take very high doses of CoQ-10. This nutrient has absorption problems, so some companies have special forms that they claim are more potent.

In this study, suggested doses were really high 600mg 4 times a day.
http://clinicaltrials.gov/ct2/show/NCT00957216

This study showed both low dose and high dose worked:
from http://www.ncbi.nlm.nih.gov/pubmed/19049556

The Tishcon company is often used by doctors and this place sells it. Its higher quality means you don't need gram range dosing but it is more pricey than others.
I'd start at the 60mg twice a day and increase if needed over time.
http://www.epic4health.com/noname.html

There are other makers, one is Doctor's Best... but it has Bioperine added to increase absorption. Bioperine may interfere with drug therapies if your father takes prescription drugs. So I would not use this type at this time.

Non Tischon CoQ-10 will need high doses, at least 300mg once or twice a day to start, and see if you need to move higher, say every 2wks-4wks. Increase slowly and give it time to work. This may save you money. CoQ-10 is not a toxic substance, so only your pocket book is a factor for most people.

This monograph may be helpful:
http://lpi.oregonstate.edu/infocenter/othernuts/coq10/
There are newer versions of CoQ-10 called Ubinquinol. These allow lower dosing, but are much more costly. They claim better absorption.

Ataxia
 

Hi, My name is Werner and i live in South Africa. I'm sorry to hear about your brother. My Daughter 10 years old has been diagnosed with Ataxia. But the question I have is... did the stem cell injections work? i'll do anything for my daughter as it is prognosed that she has one of the fatal ataxia's and that the prospect doesn't look good.

Thank you for taking the time.

Best Regards
Werner

Hello Werner, and welcome to NeuroTalk.

I'm not sure if you noticed that this is an old thread but considering it was commenced back in 2007, it's possible the person you've addressed your reply to, make not see it.

Hopefully others will be able to assist you if that's the case.

If you are still out there, I would like to know how your brother is doing and what happened.
Thanks, Alex

I am a new member to this forum and I have started to read different stories that has given me courage to keep moving forward and be strong. I am a 57yr old male with c. ataxia.

Cara, I am grateful that I don't suffer from this disease. Just wanted to commend you for providing so much useful information. In fact, it would be good if your posting were made a Sticky to prevent it from getting lost in the archives.


Gary

SCA Type 1
 

Hello Everyone, . I am living in South Africa, and was diagnosed with SCA Type 1 last October ’12. Unfortunately, in my case it is genetic. We can trace it back to my maternal grandmother’s brother who had it (he was the only one to have it (that we know of) - although at the time not much was known about the disease and only from the symptoms that he presented, is it being presumed that he had SCA), and 3 of his 6 children had it. My grandmother didn’t have it nor did any other of her siblings or any of her children – 7, but it has manifested itself in the families of 3 of her children, my mother and her 2 older brothers. Whilst our parent didn’t have SCA, each of my uncles have lost 3 children each to SCA, and my mother has lost one already – my eldest brother. I now have an older brother who was diagnosed with SCA +/- 5years ago, and last year I was.

I am so happy to have found an online `SCA family’ to share my fears with. I was referred to a Neurologist by my Diabetic Specialist because I started having a problem with pain/burning feet and my doctor thought that Neuropathy was starting to develop in my feet. However she did know my family history of SCA as well and recommended that I be tested for it. On receiving the results I asked that particular neurologist what the way forward was and his response was; “there’s no known treatment, and no known cure. This is an incurable disease and all we can do is monitor the shrinking of the cerebellar annually by way of an MRI”.

That’s not what I wanted to hear, nor did my immediate or extended family. Everyone started phoning or asking around, and we found another Neurologist, a much younger person who appeared to be far more clued up on new developments in the Neurological field (apparently he is among the Top 10 Neurologists in South Africa). I visited him in November last year, he did confirm the diagnosis and also the statement about the treatment and cure for SCA, however he did say that there was medication “out in the market” that could help with the stumbling/instability/shaking and also help with the memory. It was just a matter of getting “the right cocktail”.

I have been on a “cocktail” of Azilect, Symmetral, Integral and Livifem (which I take at different times during the day), and it seems to be working (please God I ask). I have seen how people looked at my eldest brother and thought that he was drunk, and even when he spoke. It’s now happening to the other. That is my fear, how will I handle it.

My apologies for “loading” all this on you guys, and I hope you’ll understand that I just need to “speak” with people who understand where I am and coming from. God Bless!