This is the "main" forum that contains new introductions and other topics. A place to talk about your experiences, thoughts and advice.

Moderator: gloria

By DaveW
#1252
Comments removed.
Last edited by DaveW on Sat Dec 01, 2012 6:37 am, edited 1 time in total.
By Chris
#1253
Hi all!
I too tend to stumble around in the dark and have been known to bounce off the odd wall even with night lights. I often wake my dear hubby up in the middle of the night with my thumping around. My legs almost feel like stumps and have a mind of their own in the dark. When I saw my specialist last summer he had me stand with my eyes closed and my arms out in front of me so he and his colleagues could see my tremor. Needless to say I didn't last long in the standing position before I was trying to grab on to something which happened to be a doctor. They all agreed I had a tremor....duh....I could have told them that without having to go there and spend a few hours being questioned and then made to perform. I guess we have to do things like that in the name of science. I was only the second patient they had seen with OT at the balance disorder clinic at the University of British Columbia in Vancouver, B.C. I think their main focus for research is for patients with MS and Parkinsons. I only go to see them about every 3 years as I really don't think there is anything they can do for me at the moment. I get more info from this web site than I do them. I am not on any meds and feel pretty good even though at times I feel my tremor is getting decidedly worse. I just get on with my life as it is and enjoy reading all the posts on the site. My family doctor has told me if I need to see anyone else to just let him know but for now I am hanging in there.
Take care everyone and enjoy the summer.
Chris :)
By admin
#1256
we found the missing letter -

Mike,

I understand how you feel about not hearing from people. Summer around here goes so quickly that I for one do not spend much time on the computer. But I would like to rant a bit too.

I went to an Irish Fair (a little bit of Irish backgound) yesterday which was really stupid! It was hot and the only place I could sit was in the sun. The foods that I wanted were the ones everyone else wanted so the lines were too long. I had to have an Irish beer in the beer tent since they had chairs there! Usually I think alcohol helps. But then I do not try to stand around either. Everytime I try to do normal things it depresses me.

When we were in Rochester it seemed to me that I could stand longer than most of the people there. I told Gloria and she said to mention what drugs I take in the forum to see if others take any of them. So..

When a nuerologist saw me about 14 years ago he thought I had a mitrocondrial problem. He recommended I take Co-enzyme-Q-10, 100mg 3x day. I take 100mg daily since it is expensive and I did not feel it was doing much good. But perhaps it is keeping me from progressing as fast as some people. Or coincidence I do not know. I may up the dosage. Vit B has also been recommended and I have been taking Super B complex with Vit C for about 8 years. I tried all the other drugs for OT and the tremors got worse and I did not like the side effects. Just a about 1 year ago a neurologist recommended I take lorazepam to keep me from having muscle pains. I take 0.5mg of that each morning. It seems to help the spasms too.

Have you or anyone else been taking supplements or tried them?

Best to you, Mike
Lorie M
By MikeS
#1257
Hi Lorrie
Welcome back from your trip round cyber space.
I am pleased to hear you went to the fair.Do you have a wheelchair it is such a great help for those types of trips May I suggst a parosol to shade you from the sun .The whole trip then becomes a pleasnt outing,get your little card out and jump(not litteraly of course) to the front of the line.I do not go anywhere without them.
My wheelchair is now doing more miles than my car!
Having said all that I understand completly what you are saying .These outings ,trips,can be so distessing if we dont go properly prepared.
I remember in Rochester you being able to stand longer than some...is that still the case ?I cant do more than a minute or so.
I have got a lot worse than when we were there.Its great the meds help with the pain I might try some and see if they help mine .I will let you know if they do.
Keep Smiling and thanks so much for the update
Mike :D
By Marianne
#1258
Hello to all:

I hardly ever used this forum until I retired in January of 2008. Now I check it almost everyday. I suddenly became worse in a very short period of time. In April of this year I could barely stand 30 seconds. I am thankful that I had the vigilance to pursue the electric scooter with my insurance company. Otherwise I would be a recluse. We cannot forget that we are our support group. Only we know how we feel when we are unable to do the things that were so simple to do at one time. But, I refuse to give into this condition. I push myself to the limit and that's what all of you should do.
I don't even feel like going to the neurologist anymore because each visit is so predictable. He tries to help by attempting to prescribe certain meds which he has researched "might" help. I feel like a guinea pig and I try to resist saying yes, but he always convinces me that perhaps the drug he is suggesting is the one that will help control my tremors. He puts me through the same "exercises": asks me to walk down the hall, tap my heels, open and close my hands, etc. Next month, when I see him again, I will tell him that I will no longer try any more new meds. I will stay with the Clonazepam (which has been my mainstay since 1996). I feel as if the Clonazepam has become a psychological crutch for me because it certainly does nothing for my tremors; however, I feel that if I don't take the meds, I won't be able to stand up at all.

I am happy, though, that OT cannot be passed on to your children. I would never want my children (or anyone for that matter) to have to endure the trials and tribulations of this condition.

Please keep on posting. I for one will be on the forum reading your posts hoping to hear positive things from all of you.

TAKE CARE,
Kaylie
By Joan
#1259
I have been away on a camping holiday in the woods. Had a dickens of a time climbing into the 12 foot boat and out, very ungraceful. We went for a hike and I had to cross a creek on a log. Guess what? I ended up wading through the creek in my shoes and socks. I first tried to slide across on my bottom and when that didn't work I just waded in. My husband said it was a very interesting sight. BUT I did it. I thought we would have restful sleeps in the wilderness but no. the first night 100 Canada Geese chose to have a rip roaring fight outside our R.V. Next night was a rip roaring thunder storm for hours. Next night was the bear arriving, people banging all their pots and pans. The rangers arrived and set up a command post next to us with spotlights , they then proceeded to lob flares and shoot what sounded like cannons. They were trying to get him to go up the mountain where the food was.
Anyway I'm tired and happy to be back in the city.
I am so relieved about my shopping now. Walmart just opened a Supercentre near us and have about 6 motorized scooters, what a treat to shop with them. the first day when we were in the checkout my Husband leaned over and whispered in my ear " LIMP"
By MikeS
#1260
Hi Joan
Sounds like your vacation was fun.I dont think I could do that must have be hard for you.
Your last line made me think ,the bit where your husband says 'limp'.The trouble with OT is that when you walk it gets easier so we all have this problem of explaining or not why we can get out of our wheelchairs or chairs and walk away.I have had a few problems with people tuting or making comments re the 'miracle' of the checkout or being served first at a bank.Do any of you bother to explain or say anything when a comment is made? I am so fed up with my teddy bear legs that I just give them a glare and hope they say something else so I can vent my frustration at them but thats just a thing I have to deal with.What have you all given up that you enjoyed that now is no longer feasable or possible? I suppose we all lose something with this disabillity or give something up .This post has also thrown up some new things that OT suffers have in common like walking in the dark.Im not sure if we could collate all the different things for the neuroligists to see.There is a post re a questionaire but nothing has been posted or mentioned since June.I wonder if we can revive that?
Keep smiling
Mike
:D
By Marianne
#1261
Hi Mike: I understand your frustrations about not being able to do the things we used to. I have never had a comment made to me (directly or indirectly about getting up from a scooter or wheelchair and walking away). At this moment, I believe I would probably just "suck it in" and just keep walking. Walking at a brisk pace is OK for me for just a few short minutes, but soon after I need to find a place to sit. Slowing down is the problem and standing still (well you don't need me to explain the feeling). I cannot go to my closet to remove the clothing from the hangars that I intend to wear for the day because I can't stand long enough to look for it. Cleaning my home has completely gone out the door. I'm blessed with a patient husband who does that, does the wash, irons when necessary and does all that I used to be able to do. ADL's are a tremendous challenge. I now have a revolving bar stool which I use to blow dry my har, wash my face, brush my teeth. If I try standing, I wind up leaning against the sink, my lower back starts to "scream" and eventually, I need to sit. Can't stand and lift my grandchildren at at the same time, although I can hold them if I'm sitting down. All the things we used to take for granted are slowly being taken from us.

But we can't let this condition control us. We must fight it with everything we have. If I cannot find something in a dresser drawer during the few seconds that I can stand, I just sit myself on the floor and rummage through the drawers until I find it. Just find and invent other ways to do things. Believe me, if you want to do something or find something, you will find a way to do it.

Keep smiling :D

Kaylie
By patty
#1262
Hi everyone, although I have had this condition since my 40's (now 63) I can't decide if it has got any worse, I can still do certain things as long as it does'nt involve standing too long unsupported, I wash up, cook meals etc by leaning on the kitchen units, I have not stood to iron for years but can easily iron sitting down with the ironing board in a low position, lots of things I do on my hands & knees, like cleaning the kitchen floor or gardening, if I use the hoover I do it as quickly as possible.

When we go on holiday I take a seat at the airport & wait until my husband reaches the front & I then join him to check in, although going through security can be difficult, sometimes I hold onto my husband but if the queue keeps on moving I'm not too bad. The point I am trying to make is there does seem to be varying degrees of OT for what ever reason and I think, as you do Mike, that the questionaire would be a wonderful tool to compare our symptoms, even though some of us have a much harder time than others we all have a very similar pattern.

Take care all, Patty
By Chris
#1263
Hi everyone! When people make comments to me about needing to use a power cart or going in front of people in a buffet line I usually just smile and say I wish I had a choice. Then usually my husband or someone else who is with me will tell them that I have great difficulty standing. I once had a greeter in Walmart make a bit of a catty comment to me to the fact that I could sure could walk well considering I needed a cart to shop in the store. When my hubby explained to her my problem she felt really bad and kept apologizing. I do give out the little cards that explain my condition and that helps a lot too. On the whole I don't worry about it and I never feel quilty anymore about using the carts or any aid I can. I have to get on with my life too. Take care all. Chris :)
By Chris
#1264
Hi again
I forgot to mention the questionnaire ......it would be a super idea as we all seem to be progressing quite differently. I seem to be getting worse lately I think but it could be because I am really busy and trying to do a lot. I am only 58 and I was kind of hoping I wouldn't progress too fast. Keep in touch
Chris
By DaveW
#1265
Comments removed.
Last edited by DaveW on Sat Dec 01, 2012 6:38 am, edited 1 time in total.
By MikeS
#1266
Hi Dave
I would suggest you find a firm of carpet fitters and explain your situation I am sure they would help you.
Mike :D
By patty
#1267
Hi Dave, I never do anything on my knees without either a kneeling pad or an old cushion, but I realise doing something like assembling furniture etc would be more difficult, how about just strapping some pieces of foam to your knees when doing a larger jobs. Alternatively there are skateboarding knee pads,(we wish), I'm sure something could be used.

I've had a thought of what I miss most and its a good "jive" my husband and I used to be good movers & groovers but alas I can't keep my balance now and when I try I'm as stiff as a board trying to keep steady, oh well never mind at least we have had some real good times & good memories.

Best wishes to all, Patty
By Marianne
#1268
Hi Dave: A suggestion to try when kneeling; here in the US they sell foam-like pads that are used by gardeners when they kneel on the ground to do their planting. Just a thought............

Be well

Kaylie
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