How is everyone?

[Betty]

Hello all...

I have read the comments, and have had a couple of surgeries since I found I have OT, and can not say my OT was made worse afterwards. Of course, each of us is different, and react differently to things.

I do know my OT is getting worse; but I think that is 'the nature of the beast' ~ at least for me. Many do not see any decline and I am happy to read/hear that. I, too, hope the research starts soon and studies will begin so perhaps someone will find an answer for us.

Betty

[jolarson]

Betty, that is a positive statement. I always wanted to believe that my surgery had no part in the acceleration of OT. I guess we all are wanting to find a reason or something to blame. And, mine is getting worse too...............the nature of the beast!

[Betty]

Hi Jo,

I am happy I was able to give you some positive input as to surgery and OT. Of course, this is just MY take on things; but I did not see any difference after having surgery.

I DO feel mine started with stress. I have always felt the adrenal glands are somehow involved in OT. When I first noticed I was having a problem, I ignored it. I would make excuses; I think many of us do that at first because we don't have any idea as to what is going on.

I would describe my symptoms to neurologists as feeling 'adrenaline bursts' ~ I would tell them I felt like a VCR in fast forward. I also told them I could feel the adrenaline rushing through my body and often felt ~ what I would describe as ~ the 'fight/flight syndrome'. None took me seriously.

Sooooo, we continue to be HOPEFUL and wait...sorry to hear you are also getting worse.

Betty

[jolarson]

Betty and everyone else, a question that is now bothering me. I find that i need so much sleep. I sleep sometimes 10 hours a night and then wake up tired. It continues during the day and sometimes I even take a nap at different times during the day. It cannot be medications because I am off all of them except an occasional clonazepam that I take when I go out and maybe in a stressful situation. Yes, I am older than most of you but I usually have high energy and refuse to give in to the friggin disease. I am amny fiends and am social but this is inhibiting it. My diet is not the best because I am alone and cooking is a major problem. But I do try to eat right and take vitamins.
Anyway just a subject that I wanted to bring up to see if anyone else experiences this tiredness.

[Betty]

Good morning Jo,

I think many of us find we suffer from fatigue and are tired much of the time ~ at least that is the case with me. I think it is because it takes sooooo much energy just to try to stand and walk, it is totally exhausting.

I find if I have been out, I have expended a great amount of energy and when I get home, I MUST sit and often will fall asleep. I try to be as social as I was BOT (before OT); but since I am unable to stand and have a conversation, I find when we go places, I quickly find a place to sit and stay there.

I feel you are experiencing the same thing many of us do; fatigue and exhaustion when trying to do things we always did. It isn't easy, but I continue to try to find ways of coping. It will be interesting to see what others might write on this subject.

Gloria is the best when it comes to explaining things.....

Betty

[Dwight Kraai]

Hello All;
I found an interesting statistic. A normal healthy person uses over 300 muscles to maintain balance when standing still. We have over 600 muscles in our body. Question: how many muscles does a person with OT use to maintain balance when standing still? Are other(how many) than our leg muscles messing us up when we stand still?

Hopefully a balance expert will reply and offer some insight.

Dwight Kraai

[Betty]

Hi Dwight,

I would think if we have over 600 muscles in our body; it takes most, if not all, for us to maintain our balance. As our OT progresses, more muscles are needed, which uses so much energy it is exhausting.

Our core muscles are needed to maintain an upright position, and this, too, is very exhausting. It would be interesting if some one trained in balance would reply and offer some insight.

Betty

[owen-lynettepickles]

Hello Jo
It is because of fatigue that I have cut back the hours that I work, and once a replacement can be found for me (I am the Chatham Islands Council Secretary) and they have been trained up, I will be giving up work completely. I found I was so tired after 5-6 hours in the office that I could not go for my normal 50 minute walk (at least five times a week). While I am sitting working at a computer for the majority of my work, mental fatigue still attacks the legs. The Council office is also quite small and we are cramped for space, so it has become a battle for me trying to avoid other staff moving around, despite everyone trying to keep out of my way. There's been a number of crashes into doors and walls, some swear words from me, then a burst of laughter as we all crack up over my exploits. The same exploits can happen at home too, especially if my husband and I are both in the kitchen together. Laughter gets us through, thank goodness. I am also very fortunate to have a very understanding and helpful husband who gives me heaps of support. Like you, I don't take any medication. My Neurologist advised my GP on prescribing me Clonazepam, but I've resisted as I don't want to suffer any side effects.
I know it can be very frustrating feeling so tired, especially when you are normally so active, but we can't let this thing beat us entirely.
Regards, Lynette

[MaureenB]

[quote="Dwight Kraai"]Hello All;
I found an interesting statistic. A normal healthy person uses over 300 muscles to maintain balance when standing still. We have over 600 muscles in our body. Question: how many muscles does a person with OT use to maintain balance when standing still? Are other(how many) than our leg muscles messing us up when we stand still?

Hopefully a balance expert will reply and offer some insight.

Dwight Kraai[/quote]
Goodmorning All.
I had the most horrendous experience a few days ago.My husband and I went to look for a new outside light,,we had to go up a small flight of steps to the first floor, to my horror it was a small room with another couple in it, and no free space to lean or sit..and could not get back down I found the edge of a pillar to hold on too
After tremmoring for a short while i found I had frozen up, and could not move in the small space, my husband is wonderful to me and kept holding me, he could see my distress he said dont worry you won't fall....but unfortunatly only you guys will understand that our legs will not hold us up, I had to clench my teeth to stop myself from crying, (dont worry I did not let us down) after the other people went I found a space to half sit /lean, for a short while I then found the strength to get down stairs and out and home as soon as poss.
I was exhausted
I have had this freezing on a few occassion of late. I find if I can kneel on the floor its o k. if I am looking for things low down on shelves...But getting up presents its own problems ha ha..
Sorry to hear you will have to have surgery Gloria, and trust that you all continue to have pleasant dreams
I also wonder how Mike is ? he has not posted for a while he always keep us smiling
Regards to all .Maureen

[Chris]

Hi Maureen
So sorry to hear of your experience. I know exactly what it feels like to 'freeze up'. When it happens to me I feel like my legs are stuck in cement and it seems to take a monumental effort to get them moving again. This usually happens when I am in small spaces with no where to lean or sit or even in larger areas with too many people around. Once I can get moving fairly quickly again I seem to feel better but it is very exhausting. I almost feel like I am having a panic attack when all this happens. I also have a great difficulty going down stairs that have no hand rail....in fact I avoid them all together. I find even a few steps is very difficult to maintain my balance without holding on.
I also have had this happen when I am on the eliptical trainer at the gym. When I have been on it for about 10 minutes and am starting to get tired my legs do indeed get very heavy and very rigid and it is all I can do to get off the machine. I find walking on tread mills and using recumbent bikes a lot less stressful.
Hang in there and enjoy all the things that we can still do.
Chris

[Betty]

Hi Maureen,

When I read your account of going up a flight of steps into a small space and no place to sit or lean; I could FEEL your anxiety and stress. I have been there too!

As for the freezing; that happens to me every time I am standing/leaning for more than a few seconds. Only one who has experienced this can understand; and I am sure all on this site can relate. It is NOT a pleasant experience. But....you had your husband by your side and you remained on your feet ~ didn't cry ~ and as you said: "didn't let us down". Give yourself a 'pat on the back'!

You made me smile when you said: "I find if I can kneel on the floor it's o.k.....but getting up presents problems"....same here! We laugh, but know we must do that to keep our sense of humor and keep a positive attitude.

I have wondered about Mike too.....MIKE....WHERE ARE YOU? We all would love to read something from you.

Take care,
Betty

[MaureenB]

Thanks Chris & Betty I feel better today.
I bummed ...around the garden yesterday , and the sun is shining today.... happy days
Regards Maureen

[Dwight Kraai]

A few days aago I posted a question on this web site concerning the musceles we use when balancing ourselves. I worwarded essentially the same message to DR. Bain, the famous OT specialist in England. Following is his reponse to my quesstion.

Dear Dwight
Thanks for your enquiry. Unfortunately, no one knows the answer to your question.
Interestingly people with OT can stand in a swimming pool (water about chest height) quite happily for half an hour, whereas on dry land they can only do so for a few minutes at most. I suspect that it is more a matter of how active the muscles are, rather than the number of muscles.
With best wishes
Dr Peter Bain

Interestingly, his response raises another quesstion. Although one with OT can stand in a swimming pool with no problem, does this person still have balance problems? I will check this out the next time I am in the pool. Others of you go ahead and try it also.

[Betty]

Dwight,

I had read your post concerning the muscles we use when balancing ourselves; and I found Dr. Bain's reply very interesting.

I haven't been in a pool in years; but may have to try this and see how it works for me. I would imagine the reason one might be able to stand 'quite happily for half an hour', is because there is no weight on our legs. The water makes the body almost weightless; thus, no problems with tremors. As for ones balance in the pool, I wouldn't be able to try that because I also have severe vertigo. I have had it for years and KNOW the difference between OT balance and vertigo balance; they are quite different.

When you check out the balance problem in the pool, let us know your findings.

The only time I am without tremors is when I am dreaming ~ as I wrote earlier. When I dream, I have no tremors at all. I can do all the things I ever did before OT. It's wonderful and I now look forward to bedtime and 'dream land'.

Betty

[jolarson]

Just to add, I try to never allow myself in a small space, if possible. As we all know and probably all do, is where ever we are, the first thing we do is size up what we are getting into and then the plan of where we are going to first. This is all done within seconds, it is just an immediate reaction with OT.