R & R ...


Posted by Moderator-JB , Dec 29,2001,10:49   Archive
Holidays being the busy, happy but stressful time they are, it is more than necessary for all of us to get a bit more rest than usual. Take a nap whenever possible.

Be easy on yourself and if you become embassased at your eye appearance, simply tell the truth - I'm having a bad eye day.

On Christmas day, during dinner at my daughter's with her boyfriend's parents in attendance, my eyes decided that shutting was the thing to do. Everyone got a bit upset and hurried to do things that might help. I found myself trying to remain 'normal' and continue with my conversation (I'd decided to leave my dark glasses off.) Finally had to revert to the shades.

After dinner, while opening presents, Murphy's law being at it's best - my neck decided to do it's ST twist. Daughter handled it well, and led me to get my Klonopin.

People, the only thing we can do in a situation like this is go with the flow. We can decide to remain at home in the hermit posture or take each day for what it has to give us and work with it.

Be yourself today, and make the most of it!

Judy




Recommend Current pageAuthor Profile
Replies to this message


Re: R & R ...

Re : R & R ... --- Moderator-JB
Posted by Bob Gardner , Dec 29,2001,14:05 Top of Thread Archive
Judy, sorry to read about the problems. I did pretty well except it would take about 10 minutes of shopping for my neck to get stiff and my traps. (can't remember how to spell those shoulder muscles)to contract and having to keep a grimace on my face to keep my mouth from moving. Just a gripe for the day.

Bob

--modified by Bob Gardner at Sat, Dec 29, 2001, 14:06:07




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: R & R ...

Re : Re: R & R ... --- Bob Gardner
Posted by Virginia , Dec 29,2001,16:07 Top of Thread Archive
Bob,
I never really liked shopping anyway and my body does the same thing yours does plus my breathing starts acting up. My wonderful husband has just about completely taken over the grocery shopping and I managed to get through the Christmas shopping okay by cutting down on the number of places I went and doing mail order.

My gripe is that the same things happen to me when I try to do pleasurable things, like taking a walk outside. After being cooped up inside the house (read "kitchen") for days, I would love to be able to spend time outside, but the cold and wind add to the normal obstacles (like sunshine and exertion). I used to enjoy a brisk walk outside - fresh air and exercise - but this disorder sure reduces the fun.

Virginia in chilly Alabama
(it's trapezious)

--modified by Virginia at Sat, Dec 29, 2001, 17:09:50




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: R & R ...

Re : Re: R & R ... --- Virginia
Posted by Kelly Saffell , Dec 29,2001,16:26 Top of Thread Archive
I agree completely! We took the kids to Six Flags Holiday in the Park the Sat before Christmas after my family arrived. We had a blast but my eyes shut down alot while I walked in the cold night air. I had to hold on to someone most of the time. I did ride roller coasters with my 3 and 6 year old girls but only with my eyes shut because of the wind.

Kelly in Dallas




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: R & R .../ virginia

Re : Re: R & R ... --- Virginia
Posted by kathy , Dec 30,2001,05:27 Top of Thread Archive
i agree with you there on the obstacles even facing a simple walk, especially the wind and sun. don't you feel like you're about to perform some major athletic feat on some of these days. sometimes i come back and feel like i've just climbed mount everest in my own way. if most people even had an inkling if what it is like to perform what should be a simple and easy thing.

--modified by kathy at Sun, Dec 30, 2001, 05:28:36




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: R & R ...

Re : Re: R & R ... --- Virginia
Posted by Tim Johnson-PA-USA , Dec 30,2001,17:16 Top of Thread Archive
Virginia,
I agree with your comments about just doing something like walking, as I have the same problem. Since my BEB has gotten worse, I have had to give up my first love in exercise--racquetball, which was a tremendous help to me for twenty years. Now that I can't see the little ball to hit it anymore, I started walking. Not near as much fun, nor as good a workout, but still better than sitting all the time. But wouldn;t you know it, most every time I take a walk (I have to wait until sundown) I get major BEB activity in my eyes, face, throat and breathing. It takes me hours and extra meds to settle down by bedtime. Yet I NEED the exercise. Bummer. I'm really upset, because I love the outside (if not so cold) and the exercise, but it triggers the BEB like really bad, and even scary at times with the choking and breathing. So what can we walkers do?

Tim in PA wishing you and Carl a Happy New Year.




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: R & R ...

Re : Re: R & R ... --- Tim Johnson-PA-USA
Posted by Virginia , Dec 30,2001,18:46 Top of Thread Archive
Exercise has always been a stress-reliever for me. Now....

It's something I see-saw over constantly. I also need the exercise, but hate what it does to me. I have no suggestions, but if I ever should, believe me, it'll be posted on this board.

Happy New Year to you and Martha, too, and let's all pray for a better 2002.




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: R & R ...

Re : Re: R & R ... --- Virginia
Posted by Joanne Matuzas , Jan 01,2002,15:08 Top of Thread Archive
I have the same difficulties with exercising you all mention since I also have the breathing difficulties. About a month ago, I went to a
local San Diego dystonia meeting and a physical therapist was the
speaker. Her talk was directly related to exercise. I posed our
difficulties to her. This was her suggestion. Lay on the floor and
make sure your neck is supported properly. Pretend you are riding a bicycle and if necessary put weights on your ankles and keep your your
body from the waist up totally relaxed with eyes closed if necessary.
Her idea is that if the body is totally relaxed from the waist up,
the dystonia might not be a troublesome. At the same time, should be
getting exercise from the waist down. I have not tried it yet, but thought I would pass it on to you. Happy New Year everyone!! Joanne M. San Diego, CA



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: R & R ...

Re : Re: R & R ... --- Joanne Matuzas
Posted by June in Toronto (June Floyd,June in Toronto), Jan 01,2002,15:50 Top of Thread Archive
Joanne, I think the article that I will be trying to get hold of once the Unversity commences again, that Yvon Breton mentioned on this and the Dystonia bulletin boards, is about simulating exercises/spasms and complete facial relaxation for beb and hemifacial spasm. In 1985 there was a small control group doing this with success. Its another form of exercise, unlike the one you described but I think exercise can help everybody no matter how limited or intense it may be. I'm looking forward to getting this article and `trying' to read it.

June in Toronto (beb/meige) who is totally fed up with this horse-voice, coughing cold that has persisted for 7 days now - may have to try and see a doctor tomorrow.




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: R & R ...

Re : Re: R & R ... --- Joanne Matuzas
Posted by Virginia , Jan 01,2002,16:24 Top of Thread Archive
I'll try it. It may work, since my symptoms subside dramatically when my head is supported. I don't know how much of a workout I'll get that way, but it's worth a try and surely better than no exercise at all.

Virginia in AL




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: R & R ...

Re : Re: R & R ... --- Virginia
Posted by Sally - in - Idaho , Jan 01,2002,21:50 Top of Thread Archive
Virginia, just a thought ... if your symptoms subside when your neck is supported, could it be possible that one of those neck braces would help you?

Sally in North Idaho who is glad for the darkness after such an intensely bright day.




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: R & R ...

Re : Re: R & R ... --- Sally - in - Idaho
Posted by Virginia , Jan 02,2002,14:22 Top of Thread Archive
Alan mentioned once that he was thinking about trying a neck brace and I thought then that it might be something to try. Just haven't gotten around to checking into it. I was hoping that he would post about it again, but no word. How about it Alan? If you read this, how about telling us if you have tried it and if it helped.

Virginia, shivering in chilly AL




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: R & R .../tim

Re : Re: R & R ... --- Tim Johnson-PA-USA
Posted by kathy , Dec 31,2001,07:16 Top of Thread Archive
tim. i have a friend who says her asthma is triggered by walking in very cold weather, could that be a part of your problem?



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: R & R .../Kathy

Re : Re: R & R .../tim --- kathy
Posted by Tim Johnson-PA-USA , Dec 31,2001,12:50 Top of Thread Archive
Kathy,
I'm sure that exercise in cold weather does trigger asthma. However, asthma is not my problem, and it happens in all types of weather. Mine is like a spasming of the diaphragm, and is related to the eye disorder. Believe me, it is miserable, and very tiring.

Tim in PA. Happy New Year.




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: R & R ...

Re : Re: R & R ... --- Bob Gardner
Posted by Alan Phair , Dec 31,2001,14:38 Top of Thread Archive
Hi Bob. Nice to see you post again. It has been awhile. I have been kind of absent myself but I have been listening in. It sounds as though you are having the same problems with the neck and shoulder that I am. How is you mouth been lately. I know that was an area of concern for you several years ago. My eyes are not too good. It appears that a lot of the muscle is growing back which I am not too happy about. The lower Myectomy did not do much but I think that I had high expectations after the upper one was so successful. Oh well, we just have to flow with the tide.

I hope that you and your family have a Happy and Healthy New Year. Jan and I were going to stay home tonigh but my nephew and his wife invited us over. He is a great chef and when he does a meal it is something else. Needless to say, when it comes to good food I am always there so we are going to go there. Tomorrow we will be heading to the casino for a few days. I had gotten an invitation to their gala New Years party but we did that the last few years and it just was too hectic. While Foxwoods is the largest casino in the world, on New years eve, you cannot move. It is amazing though that tomorrow afternoon it will be back to normal so we will lose our money in a little more relaxed fashion. Again, it is great to hear from you............Alan




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: R & R ...

Re : R & R ... --- Moderator-JB
Posted by Carol Brown , Dec 29,2001,14:41 Top of Thread Archive
Hi Judy! You are absolutely right, you have "go with the flow" and do the best we can.

We had a nice holiday, although very hectic as we were on the road a lot, both christmas eve and christmas. The next day, I woke up with severe muscle spasms in my back and neck, causing a headache. I've never thought about this as being part of the dystomia, but maybe it must be. I find that a good hot shower works well for me.

Hope you are better today, Judy. God bless and happy new year.

Carol in Naselle, wa, where we are finally having a fairly mild
day. Maybe a lull before the storm, huh?




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: R & R ...

Re : R & R ... --- Moderator-JB
Posted by kathy , Dec 30,2001,05:20 Top of Thread Archive
great advice, judy. at least the people with you are educated on your disorder and knew what to do.



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile