Guest guest Posted March 27, 2000 Report Share Posted March 27, 2000 Hi --I have had PLS since 1992,mainly in my legs but some involvement in the upper body,however, I am pretty stable now. I use a walker w/tray and brakes in the house and a Wheelchair or scooter for trips,depending on where I am going.I still drive--my van has a hand brake as a backup but I " two foot " the gas and brake w/o a problem. My van has a scooter hoist/lift in the back and That makes me pretty independent. I take a full range of vitamins,minerals, and antioxidants but a good place to start would be as follows: A good multivit. like Centrum with all the B vits Extra magnesium,potassium, and calcium(good for muscle and nerves) Vit. B-12--1000mcg Lecithin--1200mg capsules 4t/d Swanson at or swansonvitamins.com is a good,reputable source for discount vitamins,by catalogue. As far as bladder control,mine is somewhat weaker but if one plans ahead,it is not much problem.Too much Baclofen can make make the problem worse by making the muscles weaker. I take 60/70mg/d and it doesn'tseem to hurt and does help the stiffness and spasticity. Keeping a positive attitude,doing as much as you can,and living life to it's fullest is the best shot in the arm you can give yourself. I hope will get out there and go! Keep gently pushing. The best to you both--Ed Ames Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2000 Report Share Posted May 1, 2000 In a message dated 5/1/00 6:03:32 PM Eastern Daylight Time, mdmfoo@... writes: It is hard to understand someones fears until you have to look at them and see yourself there someday. Now for an end to my " dark >> , I could never have put into words my deepest, darkest fear. You did. It's really a scary place and I try my best not to go there. I hate the fact that you and probably all the others have been there, but it really make me feel better knowing that someone else has been there and actually understands. I have tried to imagine myself locked in my body with no way to communicate and no way out. What a cruel disease. Thank God for hope and thank God for irises. I bet yours are beautiful. I hope you have a wonderful day. Jeanne Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2000 Report Share Posted May 2, 2000 Thanks Jeanne Anne, one of the hardest things about this disease is not being able to talk about it. Everyone I talk to wants to pretend that I'm going to get better. Most of the time I can play along. Sometimes it makes me angry. Not at them, but that I can't just have an honest conversation about my fears. This group is the only place we can let it all out. I appreciate that to no end!.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2000 Report Share Posted May 2, 2000 I agree. I think I mentioned this as one of my frustrations a while back. I can't pretend any more. I don't want people telling me that I just need to try harder or have a positive additude or if I did this, that or the other thing. I went to the arthritis doctor yesterday and got good news and bad news. The shots are working but I will have to be on the oral medication for the rest of my life along with the shots. The medication is causing my hair to fall out (probably the methatrexate he said). For some reason I was under the impression that if the shots worked I would be taken off the oral medication. (selective hearing I guess). So, for those who want to tell me it could be worse I want to say I know that but I still feel down, depressed, rotten whatever. I think what I need right now is a good joke. Anyone have one - no bald jokes please. Thanks, Kathy Thomson wrote: > Thanks Jeanne Anne, one of the hardest things about this disease is > not being able to talk about it. Everyone I talk to wants to pretend > that I'm going to get better. Most of the time I can play along. > Sometimes it makes me angry. Not at them, but that I can't just have > an honest conversation about my fears. This group is the only place > we can let it all out. I appreciate that to no end!.... > > ------------------------------------------------------------------------ > Get paid for the stuff you know! > Get answers for the stuff you don’t. And get $10 to spend on the site! > http://click./1/2200/7/_/532384/_/957280384/ > ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2000 Report Share Posted May 2, 2000 kathy,I'm putting you on my joke list,I get 10-15/day,enjoy!!!! C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2000 Report Share Posted May 2, 2000 , Jeanne Anne has a way of getting to the heart of things, doesn't she? I enjoy being able to discuss things here that other people want to avoid, also. I have one older gentleman who is around the baseball park where my son plays who keeps telling me to "get rid of that thing," referring to my walker. My response falls on deaf ears. Maybe if I told him I will die soon or the next change will be a wheelchair, he would hear. I'm not going to die soon, unless God calls me, but sometimes I just want to make people feel bad for thinking they know what I can do without knowing me. That really ticks me off! But I've learned to just shrug it off and let them live in the ignorance they have and must be willing to keep if they are not willing to discuss it with me. Wow! I'm blowing off some steam here! Didn't know it was getting to me. Sorry to let it out here, but I believe most of you understand. Thanks, Mike Gray Thomson wrote: Thanks Jeanne Anne, one of the hardest things about this disease is not being able to talk about it. Everyone I talk to wants to pretend that I'm going to get better. Most of the time I can play along. Sometimes it makes me angry. Not at them, but that I can't just have an honest conversation about my fears. This group is the only place we can let it all out. I appreciate that to no end!.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2000 Report Share Posted May 3, 2000 Thanks. What a nice gift. Kathy C828@... wrote: > kathy,I'm putting you on my joke list,I get 10-15/day,enjoy!!!! > C. > > ------------------------------------------------------------------------ > High rates giving you headaches? The 0% APR Introductory Rate from > Capital One. 9.9% Fixed thereafter! > http://click./1/3010/7/_/532384/_/957322870/ > ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2000 Report Share Posted May 3, 2000 From: Sue Hi , I too am experiencing a slight increase in saliva and fasiculations. I do not, however, have the dimpling you describe. I believe your symptoms will decrease as soon as your body is back to " normal " after the experience with interferon. I hope you " calm down " soon. I too love flowers. Your garden sounds beautiful! Isn't it wonderful that we have the time to look at our gardens. Take care and be good to yourself. Sue Re: Re: To Thanks Jeanne Anne, one of the hardest things about this disease is not being able to talk about it. Everyone I talk to wants to pretend that I'm going to get better. Most of the time I can play along. Sometimes it makes me angry. Not at them, but that I can't just have an honest conversation about my fears. This group is the only place we can let it all out. I appreciate that to no end!.... ------------------------------------------------------------------------ Get paid for the stuff you know! Get answers for the stuff you don’t. And get $10 to spend on the site! http://click./1/2200/7/_/532384/_/957280384/ ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2000 Report Share Posted May 3, 2000 , Have you had your vocal cord look at. If you have , do they press together when you talk or do they remain in a relaxed state. I ask because I have vocal cords that are pressed together (stressed). I receive botox injections and I can talk very clearly- not my normal voice if I can remember -its been so long (since 1991) . That was the only thing wrong with me at that time they thought it was spasmodic dystonia my nero still thinks that plus PLS because most PLS 'ers have the vocal cords that in the relaxed state. Just thought Id ask. Flora Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2000 Report Share Posted June 19, 2000 C, I think you should be cautious about sending messages to , when there are two 's on our message board. Please clarify who your target is, as I believe and think it is them. Then, let's all just drop this whole subject once an for all! If everyone will just use some consideration when using this board we can all get along just fine. In PLS-FRIENDSegroups, C828@a... wrote: > ,you are certainly entitled to your opinion,However,this thing was over > with a couple of weeks ago but you and several others insist upon keeping the > pot sturred up,apparently you hate to see it end! I could care less whether > or not you stay on this site, as far as I'm concerned,you've contributed > nothing to this group but insults,and complaints.As I said before,GET A LIFE! > I don't care to discuss this thing any further withyou and please don't > direct any further messages to me.Thank you for your opinion,. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2000 Report Share Posted June 19, 2000 Considerate I will be, hope that everyone else shows the same consideration too those of us that joke around occasionally.Thanks . Quote Link to comment Share on other sites More sharing options...
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