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I'm Not Drunk, I Have Ataxia

Claire Ceriani's picture

Muscular dystrophy and multiple sclerosis are probably the two most well-known movement disorders.  As a result, they have received a lot of research funding, enabling medicine to move closer to finding effective treatments and cures.  There is a movement disorder, however, that is just as serious, but often neglected.  Ataxia is a movement disorder that makes patients’ lives extremely difficult, yet is unheard of by many people.  As a result, research into treatments is significantly far behind.  Awareness of ataxia must be increased in order to drive the research that will improve the lives of its sufferers.

The word ataxia comes from the Greek “a taxis,” meaning “without order” (1).  Ataxia is a disease in which a person’s movement is uncoordinated.  The severity varies from case to case, but all forms of ataxia are characterized by difficulty in controlling balance and movement.  The most obvious symptom of ataxia is an unbalanced gait that often gives people the appearance of being intoxicated.  People with the condition often walk with their feet further apart than is typical in what is clinically called a “broadened base” (2) to compensate for poor balance.  Ataxia may also affect the coordination of the hands and fingers, resulting in poor fine motor skills such as writing.  Speech may be slurred and eye movements may be slower than normal, leading many people to believe that people with ataxia are mentally retarded.  More sever forms of ataxia may cause serious swallowing and respiratory problems (1).

Ataxia may be caused by infections, injuries, or genetic factors that cause degenerative changes in the central nervous system.  Those forms caused by disease or injury are known as sporadic ataxia and are not very common.  The more usual forms of ataxia are hereditary and may be either dominant or recessive.  The relevant genes are located on autosomal chromosomes and so affect males and females equally.  Dominantly inherited ataxias are usually less severe, and most people do not show symptoms until their twenties or thirties, or even as late as their sixties.  Recessively inherited ataxias, such as Friedreich’s Ataxia (FA), are more serious and usually begin during childhood.  They are more degenerative than dominant and sporadic ataxias and are more likely to lead to death.  FA in particular is associated with serious cardiac problems (1).

All forms of ataxia affect the cerebellum, the part of the brain controlling balance and coordination.  Ataxias that are pure cerebellar only affect balance and coordination.  Some forms may also affect the basal ganglia and the spinal cord.  These forms are referred to as cerebellar plus ataxia or spinocerebellar ataxia and may cause neuropathy (dysfunction of the peripheral nervous system), dementia, weakness, rigidity, and spasticity (1).

Until fairly recently, ataxia was thought to be strictly a movement disorder.  Further studies have shown that more advanced cases may have cognitive and emotional effects.  The cerebellum, once thought to deal solely with movement, is now understood to be involved in many processes within the brain.  It contains more neurons than the rest of the brain combined, and processes information faster than any other part of the brain.  It is connected to the cerebral cortex by an estimated forty million nerve fibers, receiving information from sensory, motor, cognitive, language, and emotional areas (3).  In addition to motor functions, the cerebellum helps control skilled mental performance, sensory acquisition, discrimination and categorization, tracking, prediction, and task sequences (4).  As a result, any damage to the cerebellum may result in impaired memory of newly learned information and procedures, and problems with “executive functions” such as planning and keeping thoughts in the proper order.  Patients may also experience an increase in irritability, anxiety, and depression (2).

The part of the cerebellum most affected by ataxia is the layer of Purkinje cells.  Each fold or “folium” of the cerebellum can be separated into three layers, the middle of which is made up of large, flat neurons called Purkinje cells.  These cells are essential for relaying information within the cerebellum.  They have highly branched dendrites that receive hundreds of thousands of inhibitory and excitatory impulses to process.  Their myelinated axons extend through the white matter to synapse with the central nuclei of the cerebellum, the only cortical neurons to do so.  They are responsible for processing efferent impulses from the motor cortex (5).  It is when these cells die or become damaged that the cerebellum is unable to function properly.

Drug treatments do exist for ataxia, but they have been largely unsuccessful so far.  A few forms of ataxia are linked to deficiencies of vitamin E and coenzyme Q10.  Drug treatments have proven effective for these types, but such ataxias are very rare and less serious than the more prevalent ones (2).  Amantadine has been shown to slow the progress of ataxia in some people and to increase energy levels, though the results do not appear to apply to the entire ataxia population (2).  In addition, GABAergic agents may reduce cerebellar tremors, but are not effective for treating ataxia symptoms as a whole (2).

Genetic studies have brought further insight into the causes of hereditary ataxia, but are still a long way from developing treatments.  In 1993, the first gene, Spinocerebellar Ataxia Type 1, or SCA-1, was identified by researchers at the University of Minnesota and Baylor College of Medicine.  This gene is linked to certain dominant forms of ataxia.  Located on chromosome six, this particular gene appears to cause ataxia when repetitions of the CAG codon are above forty (6).  More repetitions are linked to earlier onset.  Genes through SCA-28 have been found since then, suggesting that it may take the combined influence of several genes to trigger the onset of ataxia (1).  Fewer genes have been discovered for recessive ataxia, though one has been found that suggests treatment possibilities for FA.

In one study, a number of proteins linked to ataxia were tagged.  Many of these proteins revealed cellular pathways that may lead to Purkinje cell death if misfolded due to genetic mutations (7).  Another study successfully reactivated the frataxin gene in a cell culture, a gene that is often deactivated in patients with FA (8).  Though this is still a long way from a cure, this achievement suggests that it may be possible to use a virus vector in stem cells or to develop a pill that will reactivate the frataxin gene in people with FA.

The area of research that currently holds the most promise is the controversial idea of stem cells.  If it were possible to grow new cerebellar neurons, particularly Purkinje cells, it would be possible to treat all forms of ataxia.  Unfortunately, viable neurons have not been successful grown from adult stem cells.  Embryonic stem cells have to ability to differentiate into any type of cell, but adult stem cells have more limited capabilities.  Ethical concerns hold back much of the research on embryonic stem cells, so more focus is on adult stem cells.  Stem cells do exist within the adult hippocampus which, given the proper chemical signal, can differentiate into different types of neurons, however the chemical signal for Purkinje cells in not currently known.  Purkinje cells develop when the embryo is roughly ten days old and do not typically develop any more after that, making it very difficult to force adult stem cells to differentiate into them (1).

Another problem is that stem cells must be genetically similar to the host to prevent rejection.  One solution is to use cells from a sibling, specifically cord blood from an infant, which is full of stem cells, but there is only a one in four chance that the major immune determinant genes will be the same (9).  The better, though more controversial, method is therapeutic cloning.  In this procedure, the patient’s DNA is transferred to one of her own egg cells (or his or her mother’s).  This egg is then grown as a “synthetic embryo” and harvested for stem cells (9).  The problem is that the cells would still have the original mutation, and, with the exception of the frataxin gene, it is not yet known how to correct these mutations.  This is an area that must be further explored before a cure can be created.

Stem cell research has given way to a still experimental treatment for one type of ataxia.  In 2005, Angie McDonald, a sufferer of FA, underwent the first stem cell treatment for ataxia (10).  The treatment consisted of injecting stem cells from umbilical cords into the bloodstream and the base of the skull.  Though the procedure did not eliminate her symptoms, it did decrease their severity and gave her more energy.  In an interview with BBC news a year later, she said the effects were wearing off, but she planned to receive another treatment (11).  Though this is still very new and by no means a cure, it may be possible in the coming years that more forms of ataxia will at least be treatable by this method.

Research on ataxia is highly under-funded as most governments place it low on the priority list.  Very few people have even heard of the disease, including many medical professionals.  Though the disease in uncommon (approximately 15,000 Americans have it (1)), it is much more prevalent than was once believed.  Many people have been misdiagnosed by their physicians, because it is so often forgotten as a possibility.  Because of the ignorance of the public, many people with ataxia suffer prejudice.  The unbalanced gait of ataxia gives people the appearance of being drunk.  Police officers often do not accept ataxia as a valid reason for failing motor control tests, because so few have heard of it.  Many people with ataxia must wear medical alert tags to prove that they actually have a medical condition (12).  Children in particular suffer from the stigmas of ataxia.  Since it so often goes undiagnosed in children, they may be scolded for sloppy handwriting and clumsiness mistaken for carelessness.

In order to educate the public about ataxia and the importance of research, International Ataxia Awareness Day (13) was created.  This day, September 25th, is intended to teach people about ataxia and to encourage them to donate to ataxia research.  Nearly all research done on ataxia so far has been funded by volunteers, because governments give so little support.  Volunteers are also needed to donate money for specialized computers, communications and mobility aids, and home adaptations.

Ataxia needs to be recognized for the serious disease it is.  More effort should be made to educate the public about this condition.  Emphasis on this disease will help encourage donations to support research on an often neglected illness that is, nevertheless, still a serious problem for many people.  As stem cell research progresses, more ways are found to use adult stem cells, rather than embryonic stem cells.  This research must continue so that safe, ethical treatments and cures can be developed for this debilitating disease.

Web Resources
1.; National Ataxia Foundation official website

2.; Ataxia, Johns Hopkins website

3.; “The Treasure at the Bottom of the Brain” by Henrietta C. Leiner and Alan L. Leiner, New Horizons for Learning

4.; Basal Ganglia and Cerebellum, Neuroscience Tutorial from the Washington University School of Medicine

5.; Body Part—Purkinje Cell, The University of Auckland: Bioengineering Institute

6.; Euro-Ataxia Newsletter No. 4,

7.; “Organized Protein Network Discovered in the Ataxias” by Paul Girolami, National Institute of Neurological Disorders and Stroke

8.; “Researchers reverse Friedreich’s Ataxia defect in cell culture” from August 21 2006,

9.; “Stem Cell Research and Ataxia” by Prof. Bob Williamson of the University of Melbourne,

10.; “Ataxia sufferer’s stem cell hope,” BBC News 14 December 2005

11.; “Stem cell patient plans for more,” BBC News 18 December 2006

12.; Are You Drunk?, personal stories of people with ataxia

13.; Ataxia Awareness Day official website


Cat Harvey's picture


I wish I could help my sweet dad. He has spinocerebellar ataxia. Several tests and doctors before someone did the right tests. No cure. So why can't I donate blood or something to help him? They said stem cell research but its expensive. Dad started with hand tremors. It's been 20 years. His gait is wobbly and worse. He refuses to stop driving even when he can't make decisions on driving. His feet went numb 5 years ago. He fell and cracked his skull when he was a teenager. They think brain injury caused it. Now they found all dead capillaries in his body.

Liz's picture


Im wondering if you can get hereditary ataxia from your Uncle and Grandfather on your father's side of the family?

Harry Elliot's picture

I was working for Estée

I was working for Estée Lauder when I first began losing my balance, and a colleague advised me to see a doctor. I had suddenly found it difficult to walk in a straight line, but as the symptoms were mild and only worsened with tiredness, I hadn't thought much of it. While undergoing medical tests to find out what was wrong, I left my job to follow my dream of setting up my own mobile makeup business in Aberdeen. It flourished, but doctors were still baffled by my lack of balance. Could it be MS? In April 2001, a genetic specialist from Edinburgh did some blood tests and I was diagnosed with type six ataxia.

Serendip Visitor's picture

Brother with Ataxia with cerebellar syndrom

I has my brother admitted in the nursing home ashe
no longer was able to walk and care for himself, we think
he has this ataxia syndrome according to an ER
dr. here in Austin---nursing home doesn't do much for
him other than baby sit his meds, clean his room and
some walking therapy--where should I go from here to
get him treatment? when I ask nurses and doctors they
just tell me to take him to his primary dr. who only
gives him meds for edema, highblood pressure and
vitamins---I don't feel he is getting adequate attention.
Please advise someone. Thank you
512 205 0513 (messages only)

Serendip Visitor's picture

I have Ataxia and am single.

Hoping to change that.

Temaine 's picture


Hi Guys

25 September is international ataxia awareness day, we need to raise awareness!

Tai Hill's picture


I'm 37 years old- I was diagnose with SCA type 3 I think at age 30 or 35 -because of my walking I've been placed on medical leave and people thinking I have a ADD problem ... I am the person who hate or would not even think of a cane or the one who would fall without breaking any thing but my pride. But I did fall this time and broke my ankle, so now I have use a walker and sit down ..So hard to do and depressing

Espinoza's picture


Dear friend,

I am 69 years old and I was diagnose with SCA in 2012. I had to retire even whenI did not want too. I find my greatest comfort in Jesus Christ with Him I can face anything. My friend is praying for a cure but if it does not come on this side it will come in the next life. I no longer have fear.I am not worried or anxious about anything. YOU Also can have this peace. just ask Him in your life. We only have heaven and hell as an after life. Why no choose life , it is in your control. Who cares what others may say I no longer can go outside or drive. I am a recluse. That is ok. I had to give up all control but who cares?I live in slow motion It takes me 3 hours to get a bath and get ready but it makes me laugh. No one contacted me on the ataxia website. Oh well.

Temaine 's picture

I can relate to what you

I can relate to what you going through. I'm 29 years old. It's frustrating that it takes so long to do simple tasks. I've made peace with it. I changed my eating plan, I go for Physio, it's helping, it's not a cure but it helps maintain your body.

Connie Forbis Jennings 's picture

I also have disc issues in my

I also have disc issues in my lower back 4,5 & 6. I got relief from the neuropathy & pain even in my legs by having a few cortisone injections &!Naf or radio frequency burning of the nerves. It was unbelievable the relief I felt. Now I'm looking at spinal stenosis on my 3,4,& 5. It seems like it's always something. I'm still better now than 10 years ago. Prayer is huge. It lead me to speech therapy & physical therapies. Learn whatever you can about your diagnosis & fight to walk. Fight for control. Too many good therapies out there that can help. Also look at brain plasticity. We don't have to succumb to spinacerabellar ataxia.

Connie Forbis Jennings 's picture

Spinacerabellar ataxia

Hi everyone. I was diagnosed in 2009. Then my cousins were. All our grandparents aunts uncles on my mothers side. I watched the disease steal their lives a little at a time. My neuro doc sent me to physical therapy & speech therapy. My cousins have not done that. I was the first to show symptoms & the last to be taken down. I thank The Lord several times a day that my body works the way He created it to. Daily I do speech & physical therapy at home. It has turned my world around. I no longer speak or walk like a drunk unless I'm exhausted. I rest & sleep & walk & talk normal. The Denver ataxia meetings are very helpful even though they are quarterly. Fight it people. Do your therapy be grateful & know it takes time. I'm in better control now than 5 years ago. I'm not saying I don't still have symptoms. I determined to walk without a walker. Be patient with yourself. I didn't notice the changes as quickly as my family. They are good changes. Therapy works.

Amber's picture


Did your family members pass away? My 28 yr old bestfriend was just diagnosed with this yesterday! Her symptoms have progressed over just a few months time!

Carlitos's picture



help's picture

father has ataxia, IVIG didn't help


Hoping someone may have some insight.. my father has ataxia. Symptoms started in late December 2014 and now it is July and he's struggling horribly. Has a walker he uses at all times. Wheelchair may be in order soon. Speech is terribly slurred with stuttering. Can no longer read, drive, remain focused on much, and his memory is extremely poor. He has bad tremors. And because of all this, his anxiety is through the roof! He's very emotional and very depressed. He's on medication, but it hasn't improved anything.

Three weeks ago, he completed a five day IVIG treatment but has seen no results. Has anyone had more than one treatment of IVIG? Is no improvement with anything at all common? Doctor says he has Auto-immune cerebellar ataxia with anti-GAD antibodies.. Does anyone here know more about this diagnoses? I am so lost and miserable and just would like to hear or talk to someone who has experienced what my dad is going through, or perhaps know someone who has.

His health has changed so quickly, and my whole family is just devastated. We had high hopes with the IVIG but now, I am not so sure it will help.

ANY help, support, advice, or experience with this would be so greatly appreciated.

Miggy ipolar's picture

i been surfering from ataxia sin since 14 yrs old..heradetary



-Miggy BiPOlar

Angie's picture


I would love to know how your father is now. My mom sounds exactly like your dAd in Aug 15 we went to doctor because her legs were giving out and by Christmas she will most likely be in a wheelchair. It took us forever to even get a diagnosis. It is something i knew nothing about till now. It effecting her so rapidly. last week she said her vision is bothering her. she feels quite helpless as do I. has anything helped at all?

Serendip Visitor's picture

What was your moms diagnoses?

What was your moms diagnoses? My dad has been told he has autoimmune ataxia of an unknown source. His symptoms seem to have peaked and has not progressed anymore, which is good. No more treatments since his IVIG did not work. He's started physical and occupational therapy though and it's helping a lot with his strength and coordination. He's also had to have speech and swallow therapy. His vision was getting messed up too and has since had prisms put into his glasses for his double vision. All these things, the glasses, the therapy, we even tried acupunctunture, we did without help from his doctor who hasn't been much help. He recently got fitted for a weighted vest as well to help with balance and we are hoping it will help even more during his physical therapy. Is your mom seeing a specialist of some sort? It's awful to see your parent suffer with this and I hope your mother will find something to help ease her symptoms. Please keep me posted, I know how frustrating this can be.

Serendip Visitor's picture

Sounds like Myesthenia Gravis

Sounds like Myesthenia Gravis

Vicky JohnsTon's picture

I have Hereitary ataxia

My dad, uncle and great grandmother had Hereitary ataxia. And I have it now. I have no balance, I can use a cane but not very often. I use a wheelchair or scooter chair. My right knee may have artritis in it, the left knee can extend out and I have to set it back into place, has been awhile since it popped out. My dad and uncle are no longer here. I am age 59 yrs old. I don't see any doctors or specialists that deal with what I have as I can not afford to see them. I have no insurance and I am trying to apply for SSI Medicare for the medical help as not many insurance companies insure people with MS and if I could get insured it costs a lot of money to get it started. Thank you for getting back to me on this one. Sincerely Vicky JohnsTon

Vicky JohnsTon's picture

How I got MS

My dad, uncle and great grandmother had hereditary ataxia and so do I. Seems I can not walk as my balance is off. Still trying to keep legs going with exercising them. My right knee cap area hurts, but that could be artritis. My left knee is an extended knee cap, it tends to pop out on occasion, hasn't popped out in awhile thank God. My parents and uncle are no longer here. I am age 59 years old. Thanks for responding to my message. Sincerely Vicky JohnsTon

gloria mclean's picture

my mom

Hi so sorry its a very hard disease to except but we all can deal with it together lets keep in touch please

Temaine 's picture

Hi My dad was 35 when he was


My dad was 35 when he was diagnosed with ataxia. He passed away at the age of 47. He had to be medically boarded because his walk and daily functions were becoming a challenge. He lost his coordination, he couldn't walk and his speech became slurred making it difficult to understand him. It was so sad to see such a prominent man deteriorate so rapidly in front of you. I'm a 28 year old female and I found out a few months ago I also have it. I'm trying to be positive but it's hard because I feel like I don't deserve this and what's worse is I know what's going to happen to me.

Medication won't help, there's no cure. I went for Ayurvedic treatment. I did a 7 day detox and now I don't choke anymore, my speech also improved. I'm on a healthy diet now. I never use to eat healthy but because I saw an improvement by eating healthy during the detox, I decided to change.

Maybe try Ayuverdic, it's not a cure but it slows the process down. Please contact me if you need anymore information or just for support.

Dayna C's picture


May I ask what your symptoms were? When you think back, do you think you had symptoms even years ago? I'm beginning to notice clumsiness when walking on the ground. My legs get tired easily and I have to find a seat to rest in when I'm out. I don't build stamina when I exercise regularly. I'm 59. I my great grandfather and grand mother both had Ataxia. I don't know where to start.

Temaine 's picture

Hi, my symptoms were

Hi, my symptoms were clumsiness, speech was becoming slurred, I got tired really quick, I couldn't go up and down stairs without holding it. I definitely think I had the symptoms years ago but because it wasn't so bad I never thought I had a problem. When I first started noticing the symptoms I actually didn't even think I had Ataxia, I thought I was unfit so I started going to the gym more often but I wasn't improving. When I eventually went to the doctor he confirmed I have Ataxia through an MRI. My advise is go and get an MRI done. You need to know what you have so you know what steps to take. Since I know I have it the only thing I can do since there is no cure is try and slow it down. I go for Physio, speech therapy and I changed my entire diet, I read The Walhs Protocol book and follow that diet. It's not easy but I'm trying. Because Ataxia is so rare doctors are not sure about the right medication to prescribe. The medication he gave me had an adverse effect on me. So I don't believe in medication, I think live healthy and you will see a difference.
I think my granny might of had Ataxia but we not sure but I know I got Ataxia from my dad. If you need someone to talk to or you unensure of anything, you are welcome to email me:

Bryan W.'s picture

Ataxia question - early symptoms

Hello, my neurologist recently diagnosed me with spinocerrebeller atropy ataxia. I have had back pain and walking issues for over three years, degenerative discs, and now peripheral neuropathy. My mornings are the worst, and I have a hard time climbing stairs or walking up any level of incline. Also have restrictive lung desease and breathing issues. What were your early symptoms? Did you have the back and disc issues? I have deterioration of discs and vertebrae at multiple levels. 2 discs have completely disintegrated.g issues

Serendip Visitor's picture

Hi, I have no pain . my walk,

Hi, I have no pain . my walk, balance, speech and coordination are very bad, I went for a blood test and found about that I have SCA type 1 and its dominant, I think getting a blood test done is really helpful because then you know what you are dealing with. I also find it very difficult to climb stairs as well as walking up and down any level of incline.

Manpreet's picture

Suffering from ataxia

hi i am 31 years old and suffering from ataxia from last 5 years please sugesst some treatment as my condition is worsing day by day

Temaine 's picture

Hi, I'm a 28 year old female

Hi, I'm a 28 year old female and I know what you going through I also feel my condition is deteriorating rapidly. It's a horrible feeling. It's like you have no control. I feel like I'm standing on this railway line and a train is approaching me and I'm stuck I can't move , I just have to wait for it to hit me. Medication doesn't help. I go for Physio, speech therapy and I'm following the Walhs Protocol diet. It's a book by Terry Walhs, trust me, it's a great help. This is not a cure but it will slow the process down. Just try it.
If you need to talk or you want information on anything, you can email me on

guest 's picture is the is the National Ataxia foundation. Do you have FB there are a lot of ataxia support groups on there that I belong to they are great with great people and tons of ideas awesome to know were not alone. Try Dr. Wahls diet By Dr. Terry Wahls I got the book on Amazon. Research and exercise
Misti Stagl

Loretta Catalano's picture

Cerebellar Ataxia

My husband has cerebellar ataxia. He was diagnosed in his early 50's. We now know he got the gene from his mother who started showing symptons in her mid 60's. My son also has ataxia and started showing symptons at age 40. The neurologist told us one parent has to have the gene to pass it down,and it starts ten years earlier with each generation. With each generation it comes on faster. My husband has had ataxia for 30 years and has been in a wheel chair for the last five years. I give him total care. He is now legally blind, almost totally deaf. He just turned 80 years old. However, my son is 52 yrs. old and has had ataxia for ten years and is using a wheel chair most of the time. He is progressing mush faster than his father. We also have two daughters who didn't get this gene. We were lucky to find such a knowledgeable doctor. Good luck to all the people out there who have any kind of ataxia and all the care givers who attend them. God bless you all.

Herbert's picture


Am so much stuggering n i cnt controll sme of
My body joints lyk the legs n waist
I cnt stand with my eyes closed n also i cnt walk in darkbess or run
Cn u pliz findout wats wrong wid me????

Serendip Visitor  Cel's picture


Dx with ataxia(don't know what type)5 years ago.Symptoms getting worse.Just found this site & find it very helpful.

Donna's picture

Nystagmus & ataxia

Anyone have both?

Serendip Visitor's picture

I have both

I have both. Living with this for 2 full years now.

Email thoughts questions or questions!

Marlene's picture

Nygstugmas and Spinocerebellar type2

I got both found out 4 years ago and suddenly its taking me over now real fast

Serendip Visitormarie's picture

Cerrabellar ataxia

I have a beautiful son his name is tony he was diagnosed at 18months with cerrabellar ataxia he is now 16 years old and his dad myself 2daughters and son
Make sure he lives life to the full his balance has got a lot better over the years because we let him walk as much as possible instead of using wheelchair or walker it keeps his muscles active he is always in great form and travels with us all over we don't no what the future holds 4 him but we will make sure everyday is a good 1 for him because he has this condition from an early age he also has global developmental delays but he is so happy all the time it's half the battle for us stay positive and do what u can to live your life to the full

Serendip Visitor's picture

Having Ataxia is BS

I was hit by a car going 40mph, compound fracture, in a coma a month and a half. I have itaxsia and walk with a gate, I shake, My voice some times is not understandable and I have been kicked out of stores because they thought I was drunk. One time minding my own business while shopping, a store worker suddenly came up behind me and started escorting me out to the door thinking I was drunk.
Talk about disability harassment, that was BS

Serendip Visitor's picture

Hi, I completely get where

Hi, I completely get where you coming from,I inherited it from my dad. it bothers me when people stare. I think its worst for men because with my dad people used to say he is drunk all the time, once we were at a mall and a man came up to us and said you should be ashamed its so early and you already drunk.
He also got stopped once by the police in a road block and because of his voice and walk they insisted he was drunk even though the breathalyser was showing he wasn't drunk. People can be so mean.

Kim Frost's picture

Purkinje Cells/Research

We need international awareness of this disease so that funding can be provided for research to replace these damaged cells.
is a good site for this information..


Misti Ann Stagl's picture


I was wondering if any one else suffers from nystagmus and vertigo? Sometimes mine is so bad I can't even see straight. Every time I walk or am moving at all my eyes shake. Has anyone found anything that helps this?

Donna's picture

Nystagmus and vertigo

I hate it! I hate going out in public with it. This is a living nightmare

Donna's picture


i have nystagmus and ataxia due to brain surgery on my cerebellum. Dizziness is making me crazy sometimes!
P.s. New here

Misti Stagl's picture


Mine was also cause by brain surgery on my cerebellum an Astrocytoma a tumor found back in 1981 my Ataxia did not start really showing up until 2003 did not even know what was happening but I could no longer drive because of the dizziness and nystagmus it is just progressing...I NEED TO USE A WALKER,NO LONGER WORK and my nystagmus is out of control.

Serendip Visitor's picture

I'm 44 years old male and

I'm 44 years old male and diagnosed by my neurologist with spinocerebellar ataxia last month, yet waiting for genetic test. My symptoms of unbalanced walk started in mid 2012 after a surgery which took place after my small intestine twisted. My symptoms are progressing aggressively for last 6 months and at the moment it feels like that i ll be in the bed in weeks. I cant drive, write and barely can walk. Is this progress is normal?

Serendip Visitor's picture

Intestine Twisted

Weird, weird, weird, I was told adults rarely if ever get a twisted intestine. Well I also had a twisted intestine the summer of 2018. Excruciating painful. The 45 day medical crisis that followed has left me weak and the ataxia is much worse.

Michelle Deciantis's picture

re progression of symptoms

When I first had vague symptoms in early twenties they seemed slow but when my main symptoms started around 32 showing up regularly it seemed like it was quick. Within weeks I could not drive or walk without assistance or my walker. 3/4 of the way thru the last 14 yes my symptoms seem to have leveled off. I believe it depend on the type the age if your first symptoms your environment diet stress level etc.

Serendip Visitor's picture

I really don't wanna die

Im28 my mother died ten years ago at 45 years, with cerabella ataxia n a lot of other complications, my twin sisters died 5 years later with same condition, my eldest sister my final sibling died on 22nd jan this year, I'm male is their any way to prolong my life I've suffered for ten years now I've had enough if there is noway I may as we'll end my lie right now coz I'm fed up and depressed I have no family on my mums side coz her dad my grandad died the day after my eldest sisters funeral, please help me im in desperate need of some just help me prolong my life please I'm begging you

Serendip Visitor's picture

don't worry

Hey, I just seen your message on here. Firstly I want to commend you on your strength, even though you may not fully feel like it your so strong!
You see, everything in this life is a test, from life events, to diseases, and one thing remains factual which is that death does not wait for no man. We all have an appointed time that has been written before you were even born into the family God has chosen for you to be born in. May God rest all of your family members souls, forgive them for there sins and keep them away from hellfire and lighten their graves and make the questioning easy for them, amen. Don't give up, your a man, only you can take on this much on us women are too weak for it trust me, there's a reason why God is testing you... How can you give up? It's washing away all of your sins! My fathers got it, and my mum passed away 2 years ago with other complications while she was always up and running, we never thought she'd go before him because of his conditions... You see I can't complain because We don't belong to anyone but Him, He who created us, when He calls onto your soul, it will go. So don't be sad or say you really don't want to die, eventually we all will.. What we really need to look at is how we will return back to our Lord, The-Almighty All-Merciful, Don't be ungrateful because He called every single one of your family members to show you that you don't need no one else but Him, so soften your heart and depend on him, if you become happy with everything that's already meant to happen and your sincerely content you won't sadden yourself with the worries of this temporarily worlds for the permanent rewards you could receive in the after life if only you Believed in the Oneness of Allaah, God, and don't ascribe any partners with him for He is one Lord, who doesn't burden a soul any more than it can bear! You will be fine my dear brother, really touched me reading your story, have faith in Him, sometimes laugh about it your still here! May you have plenty more years to enjoy, but remember don't attach yourself to this world because for a worldy happiness the earth wouldn't accept it unless you sold your faith to it. May God strenghten you, keep you steadfast, remove all your burdens and worries, restore your health and all that which you desire. Call onto Him and He will run to you, for all He is The All-Merciful ❤️

Sylvia Naidoo's picture


Hi there,

My husband has cerebella ataxia as well, there is no help as we in South Africa don't have good government hospital care. I only way he stays strong is just by believing in Jesus Christ. Jesus the the only one that can give you strength in your daily life. Do not give up trust GOD with all your heart and believe in the promises of healing. This may sound ridiculous but don't give up hold on to Jesus and life would be easy.

Be blessed!

kim's picture

your life is worth saving

hello.. although i'm not stricken with your disease BUT i have a grandson that had been digonosed when he was 3.... i feel your pain...and i know how lonely you must feel... i cried when i read your story and decided to write to you.. i'm not quite sure if i can help but i'm sure a kind word of encoragement can ease a little.. i worry all day with my grandson, his mom is young and very young minded and her parents are not any better with coping with a child that has atxia, i have read and read and my understanding is no better than theirs but i have hope and compassion and most of all love for my only grandchild, i don;t see him but maybe 3 times a week if that, other times i'm constantly working about him and how he misunderstood.. his dad is in jail because of attempt to sale, he thought that he could have made enough money to give his only son a home, but that didn't work out because he's where he is because of it.. Reading your story although heart wrenching gave me a glance of hope... i know things look and feel just like you all alone and you are but you don't have to be.... i don't know where you live or how far you are..I'm here in pittsburgh, pa. never to far for a kind word or for you to vent or share something good or bad... your young and if you want a friend.. i'm hoping i can help you as well as you can help me and together we can be powerful.. your worth so much more that you think, i know everybody is gone that you love, but its not the end all... put a lot of you energy in finding a way to help others with ataxia and be taught how to cope with your own.. i'm sure their is plenty of people can benefit from you story.. i did. i feel like i found a friend.. taking your life is easy, but know one will ever get an understanding about your life and what you go through on a daily basis, we can benefit from you, you have so much more to give.... please rethink of ending you life.. write me back and tell me how your doing love kim