How is everyone?

[gloria]

For all, especially my cancer survivor friends,
Some of the most daunting challenges that some of us have had to deal with is cancer along with our OT. We all have gone through the standard medical treatments available and we are trying to remain survivors. But the more that I read about and personally try to follow, is including the nutritional power of a food diet that gives strength to our over burdened immune system, the natural system that helps fight off all forms of illness in our bodies. We need to follow studied nutritional diets! There is a lot of good overlapping in doing so because it will help our bodies fight the battles that challenge our bodies defenses everyday and lessens our bodies from getting other health issues. Good nutrition helps greatly with weight problems too. There are many books on nutrition to draw from but the one I like the most is ‘ The Doctor’s Book of Food Remedies’, Selene Yeager and the editors of Prevention, Rodale, Inc.

To be continued, as always, Gloria

[Betty]

Good morning all....

I have read what has been written here and especially agree with Gloria regarding trying to follow a 'studied nutritional diet'. I think it is most important to try to eat a healthy diet and try to keep our bodies in the best condition we can.

We have many things which we can't control; but diet is not one of them. We all know, with our OT problems, balance is always a concern, and if we are a bit overweight, it is most helpful if we try to maintain a healthy weight.

Gloria, thanks for the information on 'The Doctor's Book of Food Remedies' by Selene Yeager. I think all of us would benefit by reading it.

Betty

[jolarson]

Hello everyone - Just checking to see how you all are doing. This site has been slow lately and hope all are still ok. Of course, dealing with OT makes being ok difficult. I am still on the same path, no meds except an occasional clonazepam when I'm in a stressful situation. I try to go out each day even if it means going to the post office or dinner with friends. But, I will say it would be much easier to just stay home near my recliner. So hopefully you all will just post a few lines and we can all catch up. Keep smiling.................

[Betty]

Hi Jo,

I too, have checked the site several times and it does seem to be a bit quite lately. Perhaps many have nothing positive to write; I find when I don't have positive things to say, I just read the site.

However, I must say, this isn't all about being positive ~ there are negatives regarding OT, and if we can share our experiences, both positive and negative, it may be helpful to others.

As for myself, I do take clonazepan, but don't feel it is that helpful. It may take a bit of the edge off but my tremors never cease, unless seated.

I can understand when you say you try to go out each day, but would rather be at home near your recliner. Unfortunately, I have reached a point when going out ~ especially alone ~ is the MOST exhausting thing I do. When I get home I must sit and rest.

I was happy to see you writing; this made me write as well. I hope others will 'chime in' and let us all know what is going on with them.

As you said.....Keep smiling!

Betty

[DaveW]

Comments removed.

[jolarson]

I do not take clonazepam on a regular basis because it did not help with my standing at all. But, it does help with the anxiety that goes with this disease. So I only take it when I am going out and may be in a stressful situation. i.e. Football game, getting up into the stands (I have to be where I have a railing) and can't be in a crowd which moves too slow. So I just sit in the stands after the game until almost everyone is out and then grab the railing to get down and walk to the car. Hope that makes sense.

[jolarson]

Forgot to add that I take 0.5mg, but the doctor said that I could double it if necessary.

[Betty]

Hi Jo,

I guess I don't think of the 'anxiety' that goes along with OT; but I know I feel 'uncomfortable' when in crowds, etc. I am fearful someone will 'bump' me, and, at this point, I don't have the ability to keep myself from falling. However, I have yet to fall. I am very careful.

I, too, need some sort of rail to grasp in order to go up or down stairs; and if it is dark....I am totally lost. I have no sense of 'space' in the dark. Do you experience this?

Regarding football games, etc...my husband and I went to a concert Wednesday night and it was full. We got there early so we could get seated and waited until almost everyone had left before even trying to leave. That seems to help me as well.

You said you are taking clonazepam ~ 0.5mg ~ on an 'as needed' basis and not daily. No wonder my new neurologist told me I was taking a mega-dose when he found out I was taking 2mg. twice daily. This is the way it was prescribed to me when I started taking it.

He suggested I cut the tablets in half and take them at 8:00 a.m., noon, 4:00 p.m. and 8:00 p.m. I think he wanted me to spread them through the day. However, I don't think they help as much as when I took them twice a day....but I am doing what he suggested.

I think most people get the best results from Neurontin, but I have tried that twice and unable to take it.....so.....I continue as I am; hoping something new will come along.

Betty

[Chris]

Hello all.....It has been sometime since I have posted. I have been trying to get on with my life the best way possible but do enjoy reading some of the posts.
When I was first diagnosed in 2004 I was put on Clonazapam. I can't remember how much but I do know I worked up to a fairly strong dose twice a day. I was on it for about two years during which time my tremor slowly got worse. When I weaned myself of it the first thing my husband commented on was how much it had changed my personality.....I was now somewhat back to normal....according to him. I really didn't notice that it had changed me too much but I guess everyone around me had noticed the difference.
I tried Gabapentin for a time as well later on. If I took quite a high dose it did help ease the tremors and anxiety somewhat but the side effects were too awful to continue on with it for the long term.
The last few years I have been totally drug free even though the tremor has progressed to only being able to stand for a few seconds. I do experience anxiety when I have to attend an event or get into a situation where it is very crowded but I always seem to manage to work my way through it. When I attend a concert or big event I alway arrive early and wait until the crowds have thinned out before leaving. I do use a wheelchair, which I propel with my feet, for a lot of public events and functions which I find really helps a lot and keeps me out in the real world. I know some days I get really down and think "why me".........but I just tell myself it could be a lot worse and I could actually have something life threatening..... so I just get on with it. My husband is my biggest and best supporter and without him I am not sure where I would be. We workout at the gym at least three times a week and that has been the best medicine of all. I have really strengthened my core muscles a great deal which seems to help with the hip, back and leg pain I used experience when I had to stand or lean...even for a few seconds. I also try and do quite a bit of cardio at the gym and walking outside. This has kept me very healthy which all helps with the management of my life with tremors.
It would be nice if there was a magic pill we could all take to make the tremors go away......I always dream about that.....even to have it go away for a few hours would be wonderful.....just to be normal for awhile. Oh well.....life goes on.
Hang in there everyone and I look forward to reading all your posts.
Chris

[gloria]

Hi! Chris:

Thank you for your great updating post! Mike’s idea of starting the topic “ How is everyone ? ” has become one of the most popular areas of the forum. I love it because here it is like visiting with good friends. Through the years we became family of a kind and names are familiar. It is important for everyone to keep up their story line, everyone is interested!! Most of the time I give my updates on my "experience page" however, here is one question that is currently troubling me, I suffer with osteoarthritis of both knees (bone on bone) and I really do not wish to have surgery but my left knee is causing a lot of pain and stress with the OT. I was wondering if anyone of my OT friends has had knee replacements and what were the results?

Looking forward to more updates from all,
To be continued, Gloria

[Betty]

Good morning all...

I must agree with Gloria, Mike did have a great idea when he started this topic: "How is everyone?"
So many people have written, and continue to write, concerning what is going on with them and their OT. It is helpful to hear what others experience; both good and bad.

Gloria, I am sorry to hear of your knee problems; OT is enought without having other things as well. I have not experienced knee replacement, but did have knee surgery a few years ago for a torn meniscus. I realize this is much less serious than a knee replacement, but my recovery period was not difficult. I wish you well.

I continue to take one day at the time; some days are better than others ~ I feel this is probably true for all of us.

I have a question, and would like to know if anyone else has experienced this....I just realized a few days ago, upon awakening in the morning, I had been dreaming (which I think we all do); but
when dreaming, I have NO OT! I am able to walk, stand, run, play golf, dance and do ALL the things I could do before OT.

It has been so long since I could do these things; it was wonderful to feel 'normal', and brought a smile to my face. Now I look forward to bedtime and more dreams of things as they used to be ~ but ONLY IN MY DREAMS!

Happy dreaming...

Betty

[Chris]

Hi Betty
It is wonderful to dream!!! When I dream I am always "normal" or at least close to it. Sometimes when I am watching people dance or do activities that I am not able to do anymore I almost forget that I can't.....until I stand up that is. It would truly be wonderful if we could have a day doing anything we wanted to do without having to worry if we can handle it.....or even a few hours.
Oh well.....life goes on and I try to make the best of it and enjoy what I can do. At least I can sit down and drink wine!!!!!
Take care......Chris

[jolarson]

Hello to everyone - Gloria, it is a dilemma about having surgery, I am going through the same thing with needing a shoulder replacement, bone on bone, as you said, cartilage is gone. I've had physical therapy on it but it did not help or make any kind of difference. Also the therapist told me that it is a tough surgery and only about half of the people show improvement. So for now, I am not having surgery even though it hurts and keeps me awake at night etc. I also had bilateral hip replacement in 1997,( both done at the same time). It was extremely difficult but I worked out seriously at the gym before for arm strength etc. which was a help. Came through that with flying colors, no problems since. But, I did ask my doctor at a later appointment if that could have brought on the OT. I had only minor problems standing before and the OT really started kicking in about 4 years later. The doctor said the hip surgery would not affect the OT. But, I still wonder about the trauma, cutting of nerves etc. But that was for the hips and yours is the knee. I know the pain that goes with this and it is a tough decision. Perhaps someone will read this that has gone through a knee replacement and reply. Being in good physical condition, strong and seriously following doctors instruction and physical therapy is the key. Having OT is bad enough and then having knee problems must be very painful. I know you are alone as I am which makes it difficult. You'll have to be in rehab for a longer period of time. Also, Mike hasn't posted for awhile, is he ok? Keep us updated on the decision you make regarding the knee. Also Betty, in my dreams I am always my old self, very strange...................love hearing from everyone.......

[owen-lynettepickles]

Hello to everyone from the land of the Rugby World Cup Champions!! Like Jo, I believe that my OT was brought on much faster after having surgery - I had been having some early signs, but after the surgery it all started to go horribly wrong with respect to my legs. My surgery was, however, gynaecological, so nothing to do with my legs. I believe that the anaesthetic had something to do with it and am now very loathe to have any more operations - just my theory, as of course there is no medical proof out there. Regards, Lynette

[jolarson]

Hello to our friend from the beautiful land of New Zealand and your island. Doctors know nothing about OT so when we question them if perhaps the trauma of the surgery could have accelerated or caused OT of course they say no. I'm anxious for the research to start on OT, may be awhile but perhaps then we will have some answers.