Guest guest Posted September 19, 2006 Report Share Posted September 19, 2006 Hi you guys, Since I came back from my vacation I just haven't felt the same. I feel as if I lost a bunch of strength. I was fine before I left. It has been over 3 weeks now and I still don't feel back to normal. It is really scaring me because I know it is possible I may never return to my previous strength. Has this happened to you when you travel?? I am doing the valproic thing and asked for a higher dose to see if it would help bring me back. So far it hasn't but I have only increased for about a week. Can too much make us weaker? Since I have been experiencing this, some duties at work have been a bit more difficult. It really got to me last week and I broke down and in total embarrassment cried to my boss. that wasn't exactly how I planned to tell her I am losing strength, but too late now! I haven't been back to work yet but will go this afternoon. I don't know how to deal with all of this. I am scared. People who knew I could do certain things just a few weeks ago can't read my mind and know I am having trouble but I just can't seem to talk about it and it isn't exactly easy to say oh I can't do that anymore. I am not good at talking about myself and I certainly don't want pity-But the truth is I am sad and just don't know how to cope. Thanks for listening and any suggestions. --------------------------------- Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2006 Report Share Posted September 19, 2006 Hi Joy, I know it seems sad and scary. Believe me, I've been there. Do you go or have you ever been to a physical therapist. She could move and exercise your muscles. If there is anything there that could come back, physical therapy can do it. Also, Have you heard of Creatine? I take it and although I can't say for sure whether it helps or not, I feel that it does. Ask your doctor about it. Robin now what? Hi you guys, Since I came back from my vacation I just haven't felt the same. I feel as if I lost a bunch of strength. I was fine before I left. It has been over 3 weeks now and I still don't feel back to normal. It is really scaring me because I know it is possible I may never return to my previous strength. Has this happened to you when you travel?? I am doing the valproic thing and asked for a higher dose to see if it would help bring me back. So far it hasn't but I have only increased for about a week. Can too much make us weaker? Since I have been experiencing this, some duties at work have been a bit more difficult. It really got to me last week and I broke down and in total embarrassment cried to my boss. that wasn't exactly how I planned to tell her I am losing strength, but too late now! I haven't been back to work yet but will go this afternoon. I don't know how to deal with all of this. I am scared. People who knew I could do certain things just a few weeks ago can't read my mind and know I am having trouble but I just can't seem to talk about it and it isn't exactly easy to say oh I can't do that anymore. I am not good at talking about myself and I certainly don't want pity-But the truth is I am sad and just don't know how to cope. Thanks for listening and any suggestions. --------------------------------- Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2006 Report Share Posted September 19, 2006 I'm not sure about the loss of strength due to travel but As I've aged I've notice I get weak spurts that can last a week up to a month or two. I start getting sad and think I'll never do this or that again. But in time I get about 95% of my strength back and wonder why I was freaking. If you traveled maybe you just got wore out. Maybe you didn't eat and sleep as well. Try and get a restful weekend. Also don't struggle for a long time doing something. Like don't spend 10 minutes trying to lift/move something yourself. Try for a minute and then rest for a few minutes and try again. If you still cant get it get help. I find when you feel week and struggle long periods of time you just make things worse. If your loss is dramatic and came on suddenly maybe you should see a doctor to rule out low iron or illness. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2006 Report Share Posted September 19, 2006 Hi Joy, I can relate to a lot of what you wrote. Several years ago I moved. It was only across town but I guess with all the packing and unpacking and the cold (it was 7 degrees the day I moved) I overdid it. I got some strength back after a few weeks but not all of it. After that everything got a lot harder and I wore out a lot earlier in the day than before. Luckily I have a great relationship with my boss, at the time I had been working for him for about 10 years. He was always very accommodating to my needs. I too always had trouble admitting I needed help. My boss called it my superman complex. As hard it was, things got so bad I had to do something so I had a talk with him and when I admitted I was struggling and needed help I broke down too. The thing is once that happened and I opened up about it, it has been getting easier and easier to ask for help. My boss suggested that I get a laptop and a wireless internet connection so I could log on to my companies network and wor k from home one day a week (or more if i felt it was necessary). So I went to see my neurologist, explained everything to him and he put my in touch with the Office of Vocational Rehab. Through them, I got an " Ican " grant for the laptop and wireless router, it was about $3000 they allowed and that was plenty to get me up and running. It has really helped a lot. I don't know what kind of work you do, but could you do it from home with the right equipment? These days I'm still a bit stubborn but I am much more comfortable at asking for help and I have found that most people are glad to. The more people offer their help the easier it is to ask, whether it's picking something up I dropped, helping when I get stuck in the bathroom, opening a door or getting a soda from the break room. I don't know anything about Valproic, so I don't have any advice there. Good luck! Tom -------------- Original message -------------- From: Joy <j0yeuxx@...> > Hi you guys, > Since I came back from my vacation I just haven't felt the same. I feel as if > I lost a bunch of strength. I was fine before I left. It has been over 3 weeks > now and I still don't feel back to normal. It is really scaring me because I > know it is possible I may never return to my previous strength. Has this > happened to you when you travel?? > > I am doing the valproic thing and asked for a higher dose to see if it would > help bring me back. So far it hasn't but I have only increased for about a week. > Can too much make us weaker? > > Since I have been experiencing this, some duties at work have been a bit more > difficult. It really got to me last week and I broke down and in total > embarrassment cried to my boss. that wasn't exactly how I planned to tell her I > am losing strength, but too late now! I haven't been back to work yet but will > go this afternoon. I don't know how to deal with all of this. I am scared. > People who knew I could do certain things just a few weeks ago can't read my > mind and know I am having trouble but I just can't seem to talk about it and it > isn't exactly easy to say oh I can't do that anymore. I am not good at talking > about myself and I certainly don't want pity-But the truth is I am sad and just > don't know how to cope. > > Thanks for listening and any suggestions. > > > > --------------------------------- > Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates > starting at 1¢/min. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2006 Report Share Posted September 20, 2006 Hi Joy, When I read you message it certainly hit home. I recently returned from a trip to Pennsylvania. I also experienced some weakness and exhaustion. It was a disturbing trip because I rented a handicapped van with a hand control, as I've done in the past. Apparently, my arms have become weaker. I had a lot of trouble with the hand control. I was a nervous wreck. I had to drive from Cleveland to Erie, PA. I hated to tell my family about the problem. I guess I want them to think of me as capable. Anyway, I finally broke down and my sister-in-law was wonderful. She made arrangements to drive us to Cleveland. I know we like to be as independent as possible. However, if we don't share our needs with those around us, they can't help us. They can't read our minds. I'm sorry for your problems but I do have to admit it feels good to know others can relate and understand some of the things I have felt. I did find something which was recommended by my physician which has helped me regain strength. It is called Complete. It is a protein shake. It is full of nutrition and tastes delicious. If you would like more info, just e-mail me directly. mbc543@... I would be happy to share the specifics with you. Hang in there and keep your head up. THanks for sharing! Peace to You, Beth now what? Hi you guys, Since I came back from my vacation I just haven't felt the same. I feel as if I lost a bunch of strength. I was fine before I left. It has been over 3 weeks now and I still don't feel back to normal. It is really scaring me because I know it is possible I may never return to my previous strength. Has this happened to you when you travel?? I am doing the valproic thing and asked for a higher dose to see if it would help bring me back. So far it hasn't but I have only increased for about a week. Can too much make us weaker? Since I have been experiencing this, some duties at work have been a bit more difficult. It really got to me last week and I broke down and in total embarrassment cried to my boss. that wasn't exactly how I planned to tell her I am losing strength, but too late now! I haven't been back to work yet but will go this afternoon. I don't know how to deal with all of this. I am scared. People who knew I could do certain things just a few weeks ago can't read my mind and know I am having trouble but I just can't seem to talk about it and it isn't exactly easy to say oh I can't do that anymore. I am not good at talking about myself and I certainly don't want pity-But the truth is I am sad and just don't know how to cope. Thanks for listening and any suggestions. --------------------------------- Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2006 Report Share Posted September 20, 2006 Hi Joy, I had a period of extreme weakness after I went on an extreme weight gaining experiment. I gained 10 lbs. in one week while taking a week off from work. When I went back to work I could barely pick up a couple pieces of paper. I got quite upset and didn't attribute it to the weight gain (duh). After a while, I realized the extra weight made it harder to use my arms. As time went on, I somehow compensated for it. I don't have any great advise and you have gotten some from other members but I am sending you virtual hugs and positive thoughts! Lori Joy wrote: > Hi you guys, > Since I came back from my vacation I just haven't felt the same. I > feel as if I lost a bunch of strength. I was fine before I left. It > has been over 3 weeks now and I still don't feel back to normal. It is > really scaring me because I know it is possible I may never return to > my previous strength. Has this happened to you when you travel?? > > I am doing the valproic thing and asked for a higher dose to see if it > would help bring me back. So far it hasn't but I have only increased > for about a week. Can too much make us weaker? > > Since I have been experiencing this, some duties at work have been a > bit more difficult. It really got to me last week and I broke down and > in total embarrassment cried to my boss. that wasn't exactly how I > planned to tell her I am losing strength, but too late now! I haven't > been back to work yet but will go this afternoon. I don't know how to > deal with all of this. I am scared. People who knew I could do certain > things just a few weeks ago can't read my mind and know I am having > trouble but I just can't seem to talk about it and it isn't exactly > easy to say oh I can't do that anymore. I am not good at talking about > myself and I certainly don't want pity-But the truth is I am sad and > just don't know how to cope. > > Thanks for listening and any suggestions. > > > > --------------------------------- > Talk is cheap. Use Messenger to make PC-to-Phone calls. Great > rates starting at 1¢/min. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 hi joy, well at some point i noticed that going for walks, longer shopping, travels etc. is wearing me out. i`ve noticed also that now i feel totally strenghtless after rehabilitation. especially my hands can barely move. when i`ve been going regulary to rehabilitation unit for 4-5 weeks twice a year i was slowly getting worse too... so i guess it`s just age. and some additional, not dependant on us circumstances... it`s pissing me off too... love & light patie http://patie80.multiply.com http://patie.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 I noticed that as soon as the weather gets colder, I seem to get weaker. My husband thinks it's because my body is working harder to maintain my body temperature. As for physical therapy, it seems like my muscles have a limited amount of muscle strength per day. If I lift weights or move my good arm a lot, for the rest of the day it's virtually useless. But the next day or a couple days after it, I've usually recovered. Jenn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 Hey Troops! My got screwed up and my emails were not being delivered for about a week. Now that it's working I am doing my best to catch up! This " getting tired " thing is very deja vu for me. The only difference is I have lost abilities, permanently due to either old-age or SMA progression. Who knows ... I just know exactly how Joy has been feeling to the " T " as I went through most of that from the ages of 30-38 ... more sleep helped, taking breaks helped and removing negativity from my life made me " feel " like my oldself. I didn't lose any ability until my 40th birthday ..... left arm no longer bends or can hold its position without support from my right arm/hand. What happens next depends upon how many working MN's you have cause as " old age " kicks in, it will " kick " your MN's hard. All of us suffer old-age symptoms only as SMA'ers our MN resources are lower than normal so its aging affects are more noticeable and will require a tonne of patience and rework to learn how to redo things. I am so far able to do what I have always done, only now I am being forced to find new ways of doing those things. It has tried my patience some days and has made everyday life a tad more challenging, but as long as I have a positive outlook and a strong, sincere support structure ....... than Old-Age is welcome to climb aboard. Angie 41yrs going on 42 in December On Thursday 21 September 2006 14:46, Patie wrote: > hi joy, > well at some point i noticed that going for walks, longer shopping, travels > etc. is wearing me out. i`ve noticed also that now i feel totally > strenghtless after rehabilitation. especially my hands can barely move. > when i`ve been going regulary to rehabilitation unit for 4-5 weeks twice a > year i was slowly getting worse too... so i guess it`s just age. and some > additional, not dependant on us circumstances... it`s pissing me off too... > love & light > patie > > http://patie80.multiply.com > http://patie.tripod.com > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 I met with a physical therapist who did a lot of research on SMA. He told me pretty much the same thing, any physical therapy or extra exercise will only burn my muscles out and there would be no benefit. I agree with the cold weather thing too, it seems harder and harder to make it through winter every year. Tom -------------- Original message -------------- From: " jennifer " <nekrosys@...> > I noticed that as soon as the weather gets colder, I seem to get weaker. My > husband > thinks it's because my body is working harder to maintain my body temperature. > > As for physical therapy, it seems like my muscles have a limited amount of > muscle > strength per day. If I lift weights or move my good arm a lot, for the rest of > the day it's > virtually useless. But the next day or a couple days after it, I've usually > recovered. > > Jenn > > > > > > A FEW RULES > > * The list members come from many backgrounds, ages and beliefs So all > members most be tolerant and respectful to all members. > > * Some adult language and topics (like sexual health, swearing..) may > occur occasionally in emails. Over use of inappropriate language will > not be allowed. If your under 16 ask your parents/gaurdian before you > join the list. > > * No SPAMMING or sending numerous emails unrelated to the topics of > spinal muscular atrophy, health, and the daily issues of the disabled. > > Post message: > Subscribe: -subscribe > Unsubscribe: -unsubscribe > > List manager: (Sexy Mature Artist) Email: Esma1999@... > > > > > oogroups.com > > List manager: (Sexy Mature Artist) Email: Esma1999@... > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2006 Report Share Posted September 22, 2006 From my own personal experience I've found that after a period of feeling weaker, I typically gain back most of my strength over time. However, sometimes my bounce back is not complete and there is some permanent loss. For example, a few months ago I became very weak and it persisted for over a month. After awhile, I started feeling better and no longer struggled with things like going to the bathroom or eating. Part of the recovery is actually getting strength back while the other part is my body becoming used to the loss and adapting. Thus making me feel better. As I've gotten older (now 36) I've also found that I'm am much less tolerant of lack of sleep, improper diet and exhaustion. To adjust, I'm religious about getting 9-10 hours of sleep, eating well and making sure I'm drinking plenty of water. This has helped alot, especially drinking a lot of water. Finally, and most interestingly, I find that eating very little during the day helps me a lot with my strength and energy. It's odd, I know, but if I skip breakfast, and just have a banana for lunch I feel great. Then for supper I have baked chicken and some vegatables I'm all set for the next day. If I eat a full lunch, even a healthy balanced one, I feel weak and have low energy for the rest of the day. Weird, I know. But it seems to work for me. Best of luck on your situation. I hope your strength comes back. > > Hi you guys, > Since I came back from my vacation I just haven't felt the same. I feel as if I lost a bunch of strength. I was fine before I left. It has been over 3 weeks now and I still don't feel back to normal. It is really scaring me because I know it is possible I may never return to my previous strength. Has this happened to you when you travel?? > > I am doing the valproic thing and asked for a higher dose to see if it would help bring me back. So far it hasn't but I have only increased for about a week. Can too much make us weaker? > > Since I have been experiencing this, some duties at work have been a bit more difficult. It really got to me last week and I broke down and in total embarrassment cried to my boss. that wasn't exactly how I planned to tell her I am losing strength, but too late now! I haven't been back to work yet but will go this afternoon. I don't know how to deal with all of this. I am scared. People who knew I could do certain things just a few weeks ago can't read my mind and know I am having trouble but I just can't seem to talk about it and it isn't exactly easy to say oh I can't do that anymore. I am not good at talking about myself and I certainly don't want pity-But the truth is I am sad and just don't know how to cope. > > Thanks for listening and any suggestions. > > > > --------------------------------- > Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. > > Quote Link to comment Share on other sites More sharing options...
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