I know this may sound silly but does anyone know how to contact the rich and famous or say philanthropists to donate to ataxia research. The average doctor does not know much about ataxia so what chance do philanthropists have. I feel there is a cure for everything out there, it's just a matter of finding it and getting the right people to fund the research. I don't know if this is an avenue already exhausted.
I don't think it sounds silly at all. I watched a TV program with Bill Gates speaking & wondered the same thing myself. Sorry I can't give you a helpful reply ! :)
Personally, I feel the likes of footballers could well contribute some of the wages to charities.
I go to st ives on Saturday for three weeks so I am going to look into it when I get back. I have been on the internet and you can contact the Bill Gates foundation. I think he has an office in London. You can also contact celebs who give to charity like Angelina Jolie. There is also a list of the major philanthropists. So a bunch of stamps and envelopes cant do any harm can it. Tell them about ataxia and you never know. My team Glasgow Rangers donate to ataxia and donated a ball which raised 70 pounds.
I just went to my Neurologist yesterday. And I don't know why I'm always depressed when I leave. I already know what she is going to say. But I did ask her on the Research on it. It didn't look good, because they are looking at all the different kinds of ataxia. And we all know there is a lot. My cerebellum is small and stringy. 10 years ago. It was nice and plump. Why don't they just look for away to stop the cerebellum from rotten? Sorry just don't feel they are researching it in a smart way. I maybe wrong!
Hi Lori!
Mine is also distorted, to think at one time all we worried about was our weight!
My daughter dropped her 3mth Bengal kitten off here today. We're trying to get
our cat to accept him as a friend, before she goes on holiday and leaves him
here. Two chances! This is the 3rd visit and our cat still hisses and growls,
and wants to go out as soon as he sees the kitten.
The place is in turmoil with cat toys, extra tray etc and I'm exhausted. The
kitten is finally asleep on my knee as I type this, it's certainly taken my mind
off anything else!
Beryl
Hi Beryl,
I'm in a kitty mode here to. My cat loves and is always in front of me. Thank god the house is small I have a lot to grab onto so I don't always fall. Now you would think. If you get stepped on 6 times a day. You would learn not to always be in front? For god sakes. Humans cant even grasp that one. Why would a cat! Anyways my daughter just had to put her cat down. So she is looking. Hard. I just had a kitten here yesterday. Did take my mind off of me for a moment.
Lori, I'm scared to move in case I stand on him (Nando)! He's so fast, and is only asleep now
because he's so exhausted, I know how he feels! He's on my knee now, I'm desperate for the
bathroom but I don't want to wake him!
Lori said:
Hi Beryl,
I'm in a kitty mode here to. My cat loves and is always in front of me. Thank god the house is small I have a lot to grab onto so I don't always fall. Now you would think. If you get stepped on 6 times a day. You would learn not to always be in front? For god sakes. Humans cant even grasp that one. Why would a cat! Anyways my daughter just had to put her cat down. So she is looking. Hard. I just had a kitten here yesterday. Did take my mind off of me for a moment.
I roll my walker over an endless supply of dog toys.
I also get depresssed Lori when I have my annual Neuro meeting but last time he did say there was a lot of research going on.Gave me something to latch on to instead of being told there was no hope of a cure. There may not be a cure now but who knows.... I think some would say keep youself as healthy as possible in caseone day there is a cure.
I am not living for a cure but I live positively.The choice is mine.
Do take care of yourself. Cats and dogs are a great therapy for some.
I dare not even look at my cerebellum.There's probably none of it left.
Marie,
I saw my MRI from years ago. And now. There really is nothing left of my cerebellum. Something the doctor said to me. Instead of me being down about it. I turned it into a happy thing. The doctor said most people with a cerebellum's, that look like yours. Are in a wheelchair. I am not. Yet. I am also hoping for a cure. For all the kids that are linked to me! Thank you for the kind words Marie. I love animals. I feel bad. I had to get rid of my son's snake. It was getting a little to big for me.Had it only 3 years. And held it once. That was a night where I had a few cocktails! Ha.
I once babysat for a child who kept a snake in her bedroom. Fortunately there was no
need to go up to her but I spent a very apprehensive night!
Lori said:
Marie,
I saw my MRI from years ago. And now. There really is nothing left of my cerebellum. Something the doctor said to me. Instead of me being down about it. I turned it into a happy thing. The doctor said most people with a cerebellum's, that look like yours. Are in a wheelchair. I am not. Yet. I am also hoping for a cure. For all the kids that are linked to me! Thank you for the kind words Marie. I love animals. I feel bad. I had to get rid of my son's snake. It was getting a little to big for me.Had it only 3 years. And held it once. That was a night where I had a few cocktails! Ha.
Lori
I have been referred for a wheelchair but nothing yet.I get from a to b with my walker but even this is not good enough now.
It seems it's alll a matter of choices now.The wheelchair would be safer and I wouldn't just guess and hope for the best as I'm lurching between grab rails. This is unsafe in the garden and greenhouse.
On the other hand there is the exercise and I can reach some things.It is the balance that has gone. The legs are weak but they just about work although they do wobble a lot.
I am also worried about portability.
Most people who go to my Riding for the Disabled seem to have a manual wheelchair with big wheels.
I don't know what to do about this?
With regards Cerebellums and MRIs. I had an MRI about 6 years ago but nothing since.Then it showed disproportionate atrophy of the Cerebellum.The Neurologist seemed to know what it meant.But it was a bit of a relief to finally have a label.
I don't know if they do MRI's routinely here in the u k. I can tell by speech and Mobility that it has deteriorated.I suppose I can ask my gp for another MRI but I guess it would only confirm what we already know about my non existent or diseased Cerebellum.
It's awful when you have to take an animal to be put down by the vet.I remember crying for ages about a guinea pig.
Nobody seemed to understand but I have had to do the ritual burying of numerous hamsters,two dogs and two rabbits.
This was before I had Ataxia and I felt \I was burying the past.I cried for one night about the last dog but then I got a puppy who has grown into a very fit doggy and who trots along with my road scooter.So like you I look for the positives but I do get my down days.
Marie,
You know you have Ataxia. You know how bad it is. You know there is no cure. I would not go for a MRI. It is very depressing seeing part of your brain almost gone. On less you are getting better and you want to see the improvement. I know all about the choice. Thats why I want a man in my life to push me in the wheelchair. At 4'11 and 90 pounds, Its hard to get a wheelchair or even a walker out of the car. My strength is gone! Plus like you said. The wobbling. Burying pet's is not fun!
Hi Lori
Thanks for the advice.I didn't feel so bad about my Ataxia but now since I can no longer walk it is an ordeal.
I don't think I will bother about the second MRI.I have accepted my brain is affected but' luckily 'not the memory or thinking part.Don't know if this is a good thing or a bad thing.All I know is I am not a very good patient as I keep trying to do things and then have to be rescued.
Don't give up hope of a man.I met my third husband on the internet about 7 years ago.I feel guilty that we only had one year before I was diagnosed. I honestly didn't know .I certainly could not cope on my own.I think all of you who are on your own are very brave.I am glad I was not diagnosed while I was bringing the two children up.I could not have done it.
Mine is not supposed to be hereditary but who knows.Both my children know but don't want any tests.
Although there seems to be a great variety of symptoms,I wanted to see if my brain stem is affected.Then I might take the theory of Multiple System Atrophy more seriously.At the moment the symptoms seem to be all physical which might suggest a more pure Cerebellum Atrophy rather than all the brain.
I cannot get wheelchairs or scooters out of the back of the car. I did use my car and a walker for a couple of years but I had to step backwards to open the boot of the car,grab a passer by and look helpless.I felt very unsteady so I gave up.
In the papers today, £560m given by top companies to put ELECTRIC CARS into production!
Two chances of them contributing that amount of money to medical research.