I would like to know how we end up.
Every one says disease progresses but how do we know and what abilities will we be left with
What about people who have other diseases as well?
Dose Ataxia override other problems?
Not seen any shakey people around are we like elephants find a place to go or die?
Hi Kim,
Everyone progresses differently, even the same type of ataxia's. You can ask different Dr.'s also and you will get different opinions on it. Mostly negative but that said I don't believe that is always the case.
I can tell you my own thoughts how it is for me about this ataxia. I believe state of mind plays a huge role in my mind body connection. I think the thoughts we tell ourselves ethier can help our body's handel things better, sometimes help make the symptoms better or make things much worse depending on my interpretation of what's happening or, if I have any control over what will happen or what is happening. When I say control I mean any choices daily I make whether they help my physical body or mental mind. I work on not future tripping and work at staying in the moment as much as possible. Sometimes I need reminders depending on what's happening for me through out my day, sometimes every 5 mins. But weather it be choosing a food or stretching, exercise etc., that is where I feel more in control. I feel I have control over this ataxia somewhat not 100% all the time. Of course my higher power (which is God for me but it may look different for another person) plays a huge role in everything that I do an who I am with this ataxia.
I really feel as though I have this for a reason now. To share what it can be, because I don't feel it has to be a certain way we are told it will be.
I take charge of my foods that I eat and it's not always easy but doable! I started out not having Gluten in my diet, then eliminated refind sugars in 2007. I had an MRI to diagnose my ataxia in 2005 and 2006 that showed degeneration at the Mayo Clinic. After I stopped eating them and started this new way to approach life, it showed up in my MRI as it stopped degenerating. I have had an MRI every year since with no change. Now because it's been so long I've moved to every two years. My Dr even said "Jeannie, once the cerebellum starts degenerating it can't be stopped." I told him "There is always a first time for everything." Yes it's work, but I'm motivated daily because of any symptom that I have that day. I want to nip things in the bud if I can as natural as I can. I have to have discipline either with foods as my meds or movements that I make on a regular basis or mind games etc. It's constantly evolving for me. That keeps it interesting and I feel more in control of whats happening, or should I say what I'm making or allowing to happen to me.
When I was first diagnosed I was devastated because of what I was told my future would be by Dr's and the internet etc. So something kicked in for me, maybe it was flight or flight syndrome I'm really not sure what it was survival maybe? I decided that just because their was a bleak outlook or how life was going to be didn't mean it had to be that way.
If I would have really listened to everyone's thought about having this SCA ataxia I definitely wouldn't be doing quite as well as I am. So please take everything you hear about this Ataxia with a grain of salt. In one ear keep what you want and leave the rest. If you would like me to go into more detail about how it is for me and what I do that I feel helps message me here. Just click on my photo to get into my page. Good luck on your journey. :0)
Some days are better than others. I am treated currently for my symptoms which do reoccur after 1 weeks time (iv treatment every 2 weeks)I feel blessed knowing what I have and being able to pepare now for when I’m worse… Ie service dog, prepare the family etc,
Hi Kim 
Well, I don’t know if I actually want to know how things will turn out.
Neurologists can only be guided by what they’ve seen happen but
each individual is usually different to some extent.
I have another condition, and for me Ataxia has more impact, although
this could change.
Before I got my head around coping with SCA, yes, I could have been
an elephant.
My symptoms have crept on over a period of 25yrs, because it’s been
gradual it’s no less devastating.
Really all we can do is what you probably already know. Rest, but
exercise to the best of your ability. Eat well and try to avoid alcohol.
Do your very best to keep stress levels low. Make sure you do something
to make you happy as much as possible xB
Hi KimKillone,
I don't know how we end up although I can honestly say that this disease is galloping now, it is too sad for me to think about what my abilities were when I was twenty five and what a mess I am now so I try not to. I too, have wondered and thought I should discuss this with my neurologist but I really don't want to.
My granddad and his brother were in wheelchairs and had a lot of trouble communicating, but were still understandable and could still stand will great effort shortly before they died. My great uncle died from combination heart and respiratory failure and my granddad from pneumonia.
I heard their mother was in bed and "couldn't see" for the last ten years of her life, but she lived to be 99.
I have an older cousin who can still walk but has a lot of trouble communicating. He looks like a zombie. His wife leads him around and translates/talks for him. He appears to be in a daze some of the time.
My other older family members don't appear to be near "the end".
But, you know, my grandmother on my non-ataxic side had a terrible end with excruciating RA coupled with dementia, so she couldn't even find solace in reading or watching TV anymore. When she could no longer follow a conversation she starved herself to death. Death isn't a fun thing, no matter what, but I'm hoping I have an ataxia death and not one like my grandmother.
I think it varies based on what form you have, how severe it is, and other health problems.
I have a head bob but no one else in my support group does. I have multiple (internal) birth defects. I have diabetes. I’m not sure what will kill me off first. But I do know that these things make each other more difficult and sometimes treatment for one condition can’t be done because it’s contraindicated.
I don’t think we really know enough about the inherited ataxias to be able to determine how it will effect our life expectancy.
Thanks for sharing guys... not an easy subject and at 71 years of age, it's one I prefer to avoid. I try to keep my weight down but it has crept up to ten and a half stone! [147lbs] or [66.6 kilos] Not that bad as I am five foot four tall [162.5cms]
I have tried giving up gluten and sugar but my husband offers me too many 'treats' to resist.
I think at my age, I need treats and I'm too long in the tooth to make radical changes.
I do exercise daily and have a reasonable healthy diet [apart from treats!] I never add salt and avoid salty and fatty foods.
I do something 'positive' every day, even if that is just going out to post a letter.
Tomorrow I am going to get my hair trimmed.
I really cant bear to imagine not being able to communicate but whatever... we'll cross that bridge when we come to it.
I have met people with ataxia who need stair lift but they consider it 'exercise' and plod on.
The answer must be to aim at being positive. xx
Definitely remain positive, Kim.
As the others have said, we all progress differently. Mum had it, died at 93. She started in her 70s, was never diagnosed. She blamed her varicose veins!
My sister has it, she is 77, and hers started in her 50s. She also has osteoporosis. She now uses a walking frame.
I was diagnosed recently, and symptoms started in my early 60s. I am now 66. I also have cervical dystonia, which I'm told is associated in a small number of cases. The dystonia is almost under control after having botox injections.
I expect to get worse in due course, but at the moment things are fairly static. I concentrate on the things I can do, and get help for the things I can't.
So, three people in the one family with the same disease and it has manifested differently for all of us. My geneticist is delighted!
Oh I have SCA6.
Hi Kim,
good question, sometimes I wonder as well. Only I know ataxia does not afect longevity. Have heard alot of stories with people with ataxia, living until their 90. I dread it cos members of my family died at 95 years old. Frederich ataxia can affect your heart, and I know of people dying in their 20-ies and 30-ies.
Hi Kim,
As it was already mentioned, everyone’s different, and how you choose to take care of yourself might influence the quality of progression, no matter what the progression looks like or how fast or slow it occurs.
What I mean by the taking care of yourself includes your nutrition/diet, water intake, exercising and movement (vs. being sedentary), laughter, state of mind/outlook/positivity, meditation or prayer, mental fitness, etc.
What I choose to focus on, currently, is that which I can still do and being enthusiastic for what I can still be and do - which is a lot when reviewing everything that I’m grateful for and reminding myself of my "destiny, having nothing to do with ataxia.
It’s said that when you feel safe, you can be enthusiastic. This idea takes the concept of feeling safe to a new level; but my point is that no matter the circumstances that ataxia brings about or how some other illness takes shape, the feeling of safety can be sought and achieved.
I’m not really sure what to expect; however, I’m working on further developing inner-peace and the safety-feeling, that will hopefully weather any kind of storm, while I still take care of and prioritize my basic needs, nutrition, exercise, etc.
I live in ignorant bliss
Hi Kim,
I was diagnosed at 28. Im 32 now and walking fine but I cant walk as much as I used to because I get tired quickly. My dad has it and he's in his late 60s. He uses a walker. He didnt really exercise much when he was younger and he's a bit of a grouch so he's always thinking negatively. I think that is what made him get worse. Therefore, I try to exercise as much as i can on a daily basis and think positively.
As Jeeannie says we all progress at diffeerent rates.The good news is I have no pain or fatigue or swallowing problems.
I do have tremor,no mobility,speech and vision difficulties.I hope these are the late stages but you never know.
Hi
It depends on what type of Ataxia you have.
Damo
My Mother-in-law is 90 and has had Ataxia for 30+ years. She does very well for herself, lives on her own and uses a walker when she is out and about. She has refused to be checked out by a doctor and just tells everyone she has Parkinson's which she just pulled out of her hat. Two of her three sons have Ataxia, one is my husband. My husband carries on like nothing is wrong and does everything he wants to do. He has had ataxia symptoms for 15+ years. His brother enjoyed way too much alcohal and has pickled his brain along with his ataxia which has him currently living in a Veteran's facility with full care. My point in all this is...take care of yourself....don't drink alcohal...and believe everyday that you can get up and have a productive day. You might not look good doing it but once you explain, to the people that matter to you, what is going on, they accept the fact and keep an eye on you so they can assist you when you need it. Ataxia is progressive but you have control on how you deal with the problems which arise. Life as you know it doesn't have to end with an Ataxia diagnosis.
I've seen the zombie look. My Mother-in law has it. I think they do that look thinking they will be more steady on their feet. Eyes wide open and straight leg walking. Looks terrible but they started doing this so they feel more steady. My husband, which has ataxia, decided he isn't going to have that look and keeps his knees bent all the time. His walk looks bad too but whatever walking he can do is fine with me.
Marjorie said:
My granddad and his brother were in wheelchairs and had a lot of trouble communicating, but were still understandable and could still stand will great effort shortly before they died. My great uncle died from combination heart and respiratory failure and my granddad from pneumonia.
I heard their mother was in bed and "couldn't see" for the last ten years of her life, but she lived to be 99.
I have an older cousin who can still walk but has a lot of trouble communicating. He looks like a zombie. His wife leads him around and translates/talks for him. He appears to be in a daze some of the time.
My other older family members don't appear to be near "the end".
But, you know, my grandmother on my non-ataxic side had a terrible end with excruciating RA coupled with dementia, so she couldn't even find solace in reading or watching TV anymore. When she could no longer follow a conversation she starved herself to death. Death isn't a fun thing, no matter what, but I'm hoping I have an ataxia death and not one like my grandmother.
I totally agree with Jeannie. No two Ataxians are alike. The doctor told me that a good attitude and to keep moving will help ward off a wheelchair. My brother suffers from this awful disease and he has given up. He haas the why me attitude, does not move from the couch. Falls daily and requires assistance with everything including bathroom and eating.
I would love to have a blueprint for how it will progress but from my research and reading everyone's stories above it does appear that we are all individuals.
I have EA2 and first showed symptoms at 44 with attacks coming around every 4/6 weeks, then the winter came and an attack would last 3/4 months.
Then last year (47) I was finally diagnosed and put on diamox which has really helped with the attacks and although I have had to up the dose I sill feel really well.
My life has changed and there are lots of things I now can't do as I know they are triggers but I have to believe that with a positive attitude, (be grateful for any time when I don;t feel ill and try to minimize it when I do), I can look and feel almost my normal pre-attaxia self.
I have no idea what the future holds but if I can do all the above I hope my progression won't be to bad. I know it may get worse but I will face that when it happens.
Lucky bastard !!! ( its a joke, my sense of humor)
Douglas Place said:
I live in ignorant bliss