Symptoms

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Permalink Reply by Kati on February 8, 2012 at 10:08am

Hi

Does your brother have a constant tremor or very jerky movements? 

I have involuntary movement as part of my condition,  although mine didn't kick in until the last few years and took a while to get quite noticeable and so it affected every move I tried to make. 

I didn't like it at first but am now using it to my advantage as I had got very overweight and have dropped nearly 3 stone,  if it is due to involuntary movement/tremor increasing,  he may simply need to eat more and might like to go back to visit his neurologist to see if there are any meds that may reduce them for him,  if he will have difficulty eating enough calories to keep his weight stable? 

  

If he doesn't have alot of tremor,  it maybe due to muscle atrophy (depending how long he has been in a wheelchair and whether he was able to weight-bear or not)  and whether he is simply not eating enough, cos maybe he finds feeding himself difficult or from depression and loss of appetite? 

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Permalink Reply by tbill on February 8, 2012 at 10:31am

Yes, he does.  He has had tremors now for several years.  Mainly is right arm and sometimes his head.  No, he eats alot and all the time.  That's why it doesn't make sense for him to lose weight?  It must be muscle atrophy.  I guess that would make sense especially because he is eating like crazy.  It scares me. 

I have a question for you.  Did you find out how you got ataxia?  My brother does not know how he got it.  None of his tests indicate what the problem is and honestly we don't really know his prognosis.  It seems we are tested and tested and everythign comes back normal and no one can tell us what to expect or what the future holds other than it will just continue to get worse :(

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Permalink Reply by Kati on February 9, 2012 at 7:13am

I was born with my thyroid not working which has caused  number of problems for me since childhood, although my mobility difficulties didn't start until my early thirties I have been deaf since age 16... looking back I can now spot several little issues that might point to the fact that I've had it for many more years than people realised, so it is possible in my case it has been a result of the complications from my thyroid condition and it been present from before I was born (so affecting the developing brain, they didn't find it until I was nearly 2yrs old) 

What kinds of foods is he eating? is it a lot of low calorie food or junk food?

I would go back to the Neuro tell them what he's eating and say his weight loss doesn't make sense unless he is burning much more than he is eating from the tremors alone? .. of course it will depend on his size height and weight to what his BMR should be and whether his body would need a lot of calories anyway just for functions like breathing and organs working etc.  

I'm only 5ft 3 and half and female so my BMR (calories your body burns if you do nothing - ie in a coma) is only about 1295, for a person my height and weight (but not taking  into account the effects of ataxia)  but if for example your brother was like 6ft 2 and 15st or something obviously his body would need alot more calories just for living then with the tremor on top of that,  he could easily be needing over 3,0000 calories. 

Maybe try one day counting the calories to get an idea how many he is actually eating then ask a doctor if they can work out what he needs and if he is eating enough,  it may be as simple as that,  or they may need to examine him further for other possible causes.

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Permalink Reply by tbill on February 9, 2012 at 9:10am

Kati,

Thank you so much for your info.  I will check with my brother's doctor and see what he says.  His 20 lbs weight loss happened over a 6 month period, so that was a short amount of time for such tremendous weight loss ALTHOUGH, he is completely dependent on his wheelchair now and prior to that was using a walker.  I think the walker was keeping his muscles active so I guess not using his muscles much at all could be the main reason for weight loss.

It is sad seeing my Brother like this.  He was perfectly healthy in his childhood and played all kinds of sports.  It especially hard not knowing why or how he got this.  Have your doctors given you a prognosis? 

I don't really know what to expect with this disease.  What comes next?  Will my brother start losing his body functions?  Will he live a normal life span or not?  I just want to be prepared and no one can give me any answers on anything.  I think the doctors just don't know enough about it to feel comfortable saying.

Any bit of information you can offer about yourself would be helpful to my brother, I am sure.  Thanks for writing with me and please continue.

Tracie

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Permalink Reply by Kati on February 9, 2012 at 10:17am

I've lost 36lbs since last June,  but I was trying to  as I had got overweight,  but my thyroid also gives me problems and my involuntary movements weren't very noticeable before this last year.

Here is link to my blog you may find my last post useful,  describing the last 8 months I've spent trying to regain control:

http://katilea.wordpress.com/

My doctors have not been much use to me to be honest ,they got it wrong every step of the way! I've been told I won't be able to do this or I need this device if I have ataxia etc or I need this help etc.. but so far I've managed to prove them wrong for most of the way!   Don't take to heart what they say too much.. I take hope from (Prof) Stephen Hawkins story.. did you know he was told he had a few months to live back in 1963?..  he was 70 this January just gone!..  outlived his prognosis by over 50yrs!.. whose to say whether the next person to defy the odds will be your brother or myself?.. or any other member of this group? 

I still live independently,  I trained my dog as my assistance dog, as I already had her before I had to go in a wheelchair.  Family and friends help with heavy jobs around house,  and getting out with them to family events etc.  I also have speech and hearing difficulties so communicating face to face with strangers is difficult and tiring so I never go out on my own,  other than to walk my dog around the local village (I use a mobility scooter), go to local surgery,  nature park or Asda (in warmer weather!). 

I use my iPad or iPhone with a text to speech app on for when I need to ask a question or give someone information if chair/scooter breaks down and have to tell them where I live etc,  or communicate with hairdresser/neighbours etc. .. so I manage most aspects of daily life myself... I can sign too been deaf since 16 (was transferred to college for deaf where I learnt sign) but only my family and close friends can understand my signs.  I don't get chance to meet many other deaf people living so far from town and my local deaf club not been wheelchair accessible.

please read my post on my blog and see if there is anything that may help. I use assistive technology to access a computer,  I'm sure we could come up with a solution for your brother to access the computer to chat to others with ataxia?  There's some amazing tech out there that can really make a difference to a person level of independence.

Kati

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Permalink Reply by Patsy on February 9, 2012 at 10:29am

How ever many times I read Kati's blog, I still well up - your family must be so proud of you Kati xx

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Permalink Reply by Kati on February 10, 2012 at 6:01am

Thank you Patsy xx  :0)

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Permalink Reply by Igor on March 23, 2012 at 12:46pm

Kati,

Thank you for your blog. I have found some very interesting information about the wheelchair and how my wife could use when time comes.

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Permalink Reply by Kati on March 24, 2012 at 6:12am

you're welcome Igor.. which chair was you talking about?  (I've reviewed a few on there!)

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Permalink Reply by Jeannie Ball on March 24, 2012 at 11:13am

I'm not sure where your located but UCSF Dr. Sha is in the Movement Clinic and is above average! I find her to be very very therall with my foods, vitimins, daily life etc. In my opinion she really takes her time and turns over every stone. I like that. The biggest plus is that she really listens and hears what you say and reallly takes it in to account! To me that's rare. Good luck in your searching for a Dr. I think they are all trial and error! :0)

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