We are in the same boat - all of us! I can only speak for myself but I have no one to speak to who understands my illness coping. However, you folks understand and that gives me a place to vent of sorts. I know that it’s not a cure but it does help to take pressure off my mind as well. Even mental health professionals can’t really help that much because they really can’t understand our dilemma. They do have good advice but …
Point is, that I can come here and post my feelings and for that I say a big THANK YOU.
Chas, you said what we all feel: we’re all in the same boat, and the people here get it.
I’m a “roving” moderator who drops in to help out from time to time, but I too have a rare disease. I remember well the feeling of being uplifted when I discovered my home community. As you say, its not a cure, but it sure helps you feel better. One of the things it has taught me is the importance of frame of mind, attitude and, yes, friends.
Some things can be sympathised with, and some things can be be empathised with. Here we can empathise, we’ve all been there at one time or another. Trying explain the sensation and challenges of ataxia can often sound nonsensical, even to a Neurologist, who you might expect would understand. It really does help to just be able to speak freely and know there’s no judgement or question xB
I remember when I was diagnosed with cerebellar ataxia, I had to search online for more information. I often wonder how I would be now if the internet had never been discovered… it really is a boon. These days we have a vast choice of groups and forums so you need never feel alone. I think it is a good thing to stay in touch with a group to keep it meaningful for new members so keep posting.
Hopefully, a family member will be present at appointments with the Neurologist. My husband had little real inkling about my challenges until he eventually accompanied me. But even then, he couldn’t really ‘get to grips’ with the problem. I’d have liked him to read general information about ataxia, show genuine interest and ask questions. It takes patience and perseverance to understand these facts, but most people have so much going on their own lives, that any information just gets a cursory glance unless it refers to something life threatening. Ataxia is life changing, and requires adjustments on all sides xB
When I was first diagnosed in 1996, the only information I could find on the internet scared the living #@&% out of me. Over the years, I’ve managed to find some reliable (and non fear inducing) information. Discovering this website and group has helped me to not feel so alone though. I have an understanding family and a highly supportive and accommodating wife, but there was always this sense of (self-imposed) isolation. Not feeling alone in this ataxicrap has helped me so much.
Hi - I’m new to the site but I was diagnosed with SCA about 10 years ago and I’m so glad I found this!! I have been struggling with a lot of difficult feelings and reading through many of the posts here have brought me to tears or made me smile because I can relate so much - it’s nice to know I’m not alone and my feelings aren’t crazy
I have found it so frustrating that I don’t seem to fit in anywhere. My ataxia is very real, but it is acquired ataxia, not inherited or unknown. Mine came from surgery for a low grade brain cancer. I am fortunate that I survived progression-free for 8 years, but I have lost so much—walking, driving, working, independence, etc. I don’t fit in with the TBI crowd,though my surgery was sort of a TBI, and I don’t fit in quite right here because my problem is not progressive. Anything that the FDA might approve has to be risky and off-label for me. I really try, and succeed for the most part, to stay positive, but some days it gets me.
Hey Linda,
I’m a bit like you, a bit like “…so where do I fit?” I was involved in a MVA as a young child. Did that cause my situation? I had a few head knocks over the years. Did that cause my situation? Many years later (20+) I required a few neurosurgeries. Did that cause my situation? Has each incident had a compounding effect?
Due to my injury/symptoms I can see many parallels with a few of the groups within the Ben’s Friends Network from ataxia to TBI. None that are an exact fit, but as a brain injury can cover the whole gamut of symptoms TBI was the closest of the groups for me. Again a bit like you I question some of my symptoms in regard to other members as “well, that’s not me…” but by the same accord some of them are exactly the same and I believe that this is a big problem for people with TBI’s. We are all so individual and yet the parallels are there too. I feel that loss of ability is one thing that does link us all. For some it can be a loss of emotional connection, for some a loss of physical ability and for others a small loss on each and every level. As I have said to other members previously, brains are very individual, no 2 brains are wired exactly the same way and due to this no 2 injuries are ever going to have the same results. Two people can have exactly the same impact but have vastly differing impairments. Our brain injuries are nothing like a muscular/skeletal injury where 8 to 10weeks later and the body is all healed. Brain injuries can have a devastating lifelong effect and for many this can be a real dilemma to comprehend or understand, let alone live with.
It does not matter how nor where you feel comfortable, just so long as you do. The members here will assist, help and support as many of us are in and deal with very similar situations.
Thanks for the wonderful responses. I guess that what I was talking about is consistent with what everyone with an “odd” disease experiences. We are far enough out of the mainstream that research is nor done that may benefit us. Big Pharma will never make any money treating us. We don’t fit right. And, brain problems are so individual that we can not share exactly the same symptoms even if we do have the same disorder. That really is a lot to have in common. Maybe I fit in better than I thought!
Hey Linda,
To be honest I’ve never fitted and I think this is why many (most) dr’s have had an issue with my symptoms. As I’ve said to members previously “Dr’s are scientists and in science A+B=C” the problem I have is that my symptoms fluctuate MASSIVELY, so today, sure, A+B=C but tomorrow A+B can =X. And the dr’s can’t ‘science’ this result. Now for a dr to admit they don’t know, that is very difficult. Some simply won’t admit to the fact that they are not ‘all knowledgeable’, so instead they put it back on the patient, us, and label it all a psych issue. In my opinion big pharma is no different, they make concoctions to heal the masses, but when we are individual and not mass big pharma cannot make BIG $$$$$ profit, so for them it’s more financially beneficial to write us off. The dr’s can give us a mixture of differing pharma potions (what I call 'Mix’n’match) to try and meet our needs, but even then often there is no ‘cure all’. In fact I have been given more meds to combat the side effects of the original meds and it ends up becoming a vicious circle to the point where I almost rattle when I walk, like a pill bottle.
Because we are all so individual and our injuries are also very individual trying to find an exact match is near on impossible. I think its better to look for ‘the best fit’ rather than an ‘exact fit’.
I hope that explains it a bit better.
Thanks again for your notes. I guess I am fortunate that my symptoms are consistent, though it would be nice to be able to walk well sometimes. Everyone agrees that my problem is all in my head, but nobody thinks it is psychological. I worked for a while as a social worker and I saw lots of people taking all sorts of meds to deal with side effects of other meds. The problem is partly Orphan Drugs, but it is more than that. Handicapped to most means being in a wheelchair. Since I’m not, that doesn’t work either. Another frustration is not fitting into clinical trials that I think would help because of being unusual. Despite the frustrations, I have a lot to be very thankful for. I need to focus on that.
Some things can be sympathised with, and some things can be be empathised with. Here we can empathise, we’ve all been there at one time or another. Trying explain the sensation and challenges of ataxia can often sound nonsensical, even to a Neurologist, who you might expect would understand. It really does help to just be able to speak freely and know there’s no judgement or question 
I had to think about that 
xB