Guest guest Posted December 9, 2005 Report Share Posted December 9, 2005 Deepa, I also suffer from weakness of my arms. Sometimes I have a burst of energy, I do a lot, but then I pay for it a day later. But my weakness also comes with horrible pain. The doctors don't know why my arms hurt. SMA-II makes people weak, but doesn't cause physical pain like I am experiencing. I have noticed that sometimes, when I over work my arms, they get weaker, and the strength doesn't return. It's a continuous process of grieving for losing more and more functioning. I don't know what to take to get some strength/energy back. When I become weaker, I just cry for a while and get depressed. Then I pull myself out of that dark hole, and try to adjust to my new situation. But I don't know how long I'll be able to do that. My life with SMA terrifies me. It's a life with constant loses. Sorry for this depressing email, but my arms hurt a lot again, and it just gets harder and harder to pull myself out of those dark holes. I hope you find something to help you. If you do, share it with us all. God Bless, Meg Re: Tom a question for you Hi Deepa, I don't know of any way to increase our strength. I think the best we can do is try to maintain the strength that we have. Try not to burn yourself out trying to do too much and take care of your health! Sorry I don't have a better answer for you but if you are having a hard time with something in particular, you should post a question to the group. Chances are someone else is struggling with the same issue. Good luck! Tom -------------- Original message -------------- From: deepa narasimhan <deepatarzan@...> Hi Tom Im from india.. I have SMA TYPE II.. Im 24yrs old..My name is DEEPA.. Im suffering weakness, the same u both r goin thru . Just not able to lift my coffee cup, typing on keys is harder.. Life seriously sucks when things go weaker and ur not able to do the usal stuffs. IS THEIR ANY WAY OUT TO BUILD OUR POWERS? --- tshindle@... wrote: > I know the feeling. I can tell my arms are getting > weaker, too. I used to shave my head but about 2 > years ago I was half way through shaving and my arms > just quit. I had to wear a hat for the rest of the > day and finish it after I got some rest. Now I > don't feel like I could even get half way through. > Also spilled about half a pot of coffee at work > because I thought I could lift it like I did before. > Tom > > -------------- Original message -------------- > Just wanted to say I am type 3 and about your age > (33), but female, so I don't know if you guys just > wanted male perspectives. I am noticing more things > becoming so much harder at this age. My arms get > so tired at work I have to stop for a few, which is > REALLY hard for me to do! Today I noticed my arm > getting tired from just driving my chair- that never > happened before. It sux. > > [Non-text portions of this message have been > removed] > > Love u __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2005 Report Share Posted December 9, 2005 Meg, I hear you. I have been noticing marked weakening in my arms too lately. It really scares me, also, that I have been short of breath so much that I have to stop and get on my ventilator several times a day until I can " recharge and go " again. -a " Meg W. " <pink-tulip@...> wrote: Deepa, I also suffer from weakness of my arms. Sometimes I have a burst of energy, I do a lot, but then I pay for it a day later. But my weakness also comes with horrible pain. The doctors don't know why my arms hurt. SMA-II makes people weak, but doesn't cause physical pain like I am experiencing. I have noticed that sometimes, when I over work my arms, they get weaker, and the strength doesn't return. It's a continuous process of grieving for losing more and more functioning. I don't know what to take to get some strength/energy back. When I become weaker, I just cry for a while and get depressed. Then I pull myself out of that dark hole, and try to adjust to my new situation. But I don't know how long I'll be able to do that. My life with SMA terrifies me. It's a life with constant loses. Sorry for this depressing email, but my arms hurt a lot again, and it just gets harder and harder to pull myself out of those dark holes. I hope you find something to help you. If you do, share it with us all. God Bless, Meg Re: Tom a question for you Hi Deepa, I don't know of any way to increase our strength. I think the best we can do is try to maintain the strength that we have. Try not to burn yourself out trying to do too much and take care of your health! Sorry I don't have a better answer for you but if you are having a hard time with something in particular, you should post a question to the group. Chances are someone else is struggling with the same issue. Good luck! Tom -------------- Original message -------------- From: deepa narasimhan <deepatarzan@...> Hi Tom Im from india.. I have SMA TYPE II.. Im 24yrs old..My name is DEEPA.. Im suffering weakness, the same u both r goin thru . Just not able to lift my coffee cup, typing on keys is harder.. Life seriously sucks when things go weaker and ur not able to do the usal stuffs. IS THEIR ANY WAY OUT TO BUILD OUR POWERS? --- tshindle@... wrote: > I know the feeling. I can tell my arms are getting > weaker, too. I used to shave my head but about 2 > years ago I was half way through shaving and my arms > just quit. I had to wear a hat for the rest of the > day and finish it after I got some rest. Now I > don't feel like I could even get half way through. > Also spilled about half a pot of coffee at work > because I thought I could lift it like I did before. > Tom > > -------------- Original message -------------- > Just wanted to say I am type 3 and about your age > (33), but female, so I don't know if you guys just > wanted male perspectives. I am noticing more things > becoming so much harder at this age. My arms get > so tired at work I have to stop for a few, which is > REALLY hard for me to do! Today I noticed my arm > getting tired from just driving my chair- that never > happened before. It sux. > > [Non-text portions of this message have been > removed] > > Love u __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2005 Report Share Posted December 9, 2005 hI Meg, You are very rite, SMA Sucks...means no 1 knows the rite reason for the weakness and pain v suffer. I used to cry and get depperesed a lot but then my physiotherapst said that could coz more of weakness... so its better to know that v have pain and weakness,so take rest that time ...do wat v love the most , [i lay in my couch comfy and watch Rock music..on VH1 hahah most of the time i c good things that enegrisies my mood specially] ... Ah its tuff life with SMA...Means u r not able to do more things than ur physical level..but v got out brainzz working more thanks for that .... I read the new research suggests that one factor determining the severity of symptoms could be how much folic acid and vitamin B12 a patient consumes—either through a healthy diet or by taking vitamin pills. Let keep our spirits high ...then our weakness Deepa. --- " Meg W. " <pink-tulip@...> wrote: > Deepa, > > I also suffer from weakness of my arms. Sometimes I > have a burst of energy, > I do a lot, but then I pay for it a day later. But > my weakness also comes > with horrible pain. The doctors don't know why my > arms hurt. SMA-II makes > people weak, but doesn't cause physical pain like I > am experiencing. I have > noticed that sometimes, when I over work my arms, > they get weaker, and the > strength doesn't return. It's a continuous process > of grieving for losing > more and more functioning. > > I don't know what to take to get some > strength/energy back. When I become > weaker, I just cry for a while and get depressed. > Then I pull myself out of > that dark hole, and try to adjust to my new > situation. > > But I don't know how long I'll be able to do that. > My life with SMA > terrifies me. It's a life with constant loses. > > Sorry for this depressing email, but my arms hurt a > lot again, and it just > gets harder and harder to pull myself out of those > dark holes. > > I hope you find something to help you. If you do, > share it with us all. > > God Bless, > Meg > > > Re: Tom a question for you > > Hi Deepa, > I don't know of any way to increase our strength. I > think the best we can > do is try to maintain the strength that we have. > Try not to burn yourself > out trying to do too much and take care of your > health! Sorry I don't have > a better answer for you but if you are having a hard > time with something in > particular, you should post a question to the group. > Chances are someone > else is struggling with the same issue. Good luck! > Tom > > -------------- Original message -------------- > From: deepa narasimhan <deepatarzan@...> > Hi Tom > > Im from india.. I have SMA TYPE II.. Im 24yrs > old..My > name is DEEPA.. > Im suffering weakness, the same u both r goin thru . > Just not able to lift my coffee cup, typing on keys > is > harder.. > Life seriously sucks when things go weaker and ur > not > able to do the usal stuffs. > > IS THEIR ANY WAY OUT TO BUILD OUR POWERS? > > --- tshindle@... wrote: > > > I know the feeling. I can tell my arms are > getting > > weaker, too. I used to shave my head but about 2 > > years ago I was half way through shaving and my > arms > > just quit. I had to wear a hat for the rest of > the > > day and finish it after I got some rest. Now I > > don't feel like I could even get half way through. > > > Also spilled about half a pot of coffee at work > > because I thought I could lift it like I did > before. > > Tom > > > > -------------- Original message -------------- > > Just wanted to say I am type 3 and about your age > > (33), but female, so I don't know if you guys just > > wanted male perspectives. I am noticing more > things > > becoming so much harder at this age. My arms > get > > so tired at work I have to stop for a few, which > is > > REALLY hard for me to do! Today I noticed my arm > > getting tired from just driving my chair- that > never > > happened before. It sux. > > > > [Non-text portions of this message have been > > removed] > > > > > > > Love u > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2005 Report Share Posted December 10, 2005 Deepa, Thank you for your positive words of encouragement. I was especially surprised to read that crying could make the weakness worse. Now I finally have a reason not to cry! I will be forever grateful for sharing your wisdom. Again, thank you and God Bless, Meg Re: Tom a question for you > > Hi Deepa, > I don't know of any way to increase our strength. I > think the best we can > do is try to maintain the strength that we have. > Try not to burn yourself > out trying to do too much and take care of your > health! Sorry I don't have > a better answer for you but if you are having a hard > time with something in > particular, you should post a question to the group. > Chances are someone > else is struggling with the same issue. Good luck! > Tom > > -------------- Original message -------------- > From: deepa narasimhan <deepatarzan@...> > Hi Tom > > Im from india.. I have SMA TYPE II.. Im 24yrs > old..My > name is DEEPA.. > Im suffering weakness, the same u both r goin thru . > Just not able to lift my coffee cup, typing on keys > is > harder.. > Life seriously sucks when things go weaker and ur > not > able to do the usal stuffs. > > IS THEIR ANY WAY OUT TO BUILD OUR POWERS? > > --- tshindle@... wrote: > > > I know the feeling. I can tell my arms are > getting > > weaker, too. I used to shave my head but about 2 > > years ago I was half way through shaving and my > arms > > just quit. I had to wear a hat for the rest of > the > > day and finish it after I got some rest. Now I > > don't feel like I could even get half way through. > > > Also spilled about half a pot of coffee at work > > because I thought I could lift it like I did > before. > > Tom > > > > -------------- Original message -------------- > > Just wanted to say I am type 3 and about your age > > (33), but female, so I don't know if you guys just > > wanted male perspectives. I am noticing more > things > > becoming so much harder at this age. My arms > get > > so tired at work I have to stop for a few, which > is > > REALLY hard for me to do! Today I noticed my arm > > getting tired from just driving my chair- that > never > > happened before. It sux. > > > > [Non-text portions of this message have been > > removed] > > > > > > > Love u > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2005 Report Share Posted December 10, 2005 People don't understand how terrifying this losing of function is for us. I am grateful for finding my way to this group. I used to feel so alone in my struggles. But now I see that there are so many of us, who deal with this heartache, yet we continue to go on and live, as hard and pointless as it seems sometimes. I think we hold each other's spirits up since we share the same pain. We also share our triumphs and life's joys, and that builds up more hope in us all. We're so far apart physically, yet so very close emotionally. God Bless, Meg Re: Tom a question for you Hi Deepa, I don't know of any way to increase our strength. I think the best we can do is try to maintain the strength that we have. Try not to burn yourself out trying to do too much and take care of your health! Sorry I don't have a better answer for you but if you are having a hard time with something in particular, you should post a question to the group. Chances are someone else is struggling with the same issue. Good luck! Tom -------------- Original message -------------- From: deepa narasimhan <deepatarzan@...> Hi Tom Im from india.. I have SMA TYPE II.. Im 24yrs old..My name is DEEPA.. Im suffering weakness, the same u both r goin thru . Just not able to lift my coffee cup, typing on keys is harder.. Life seriously sucks when things go weaker and ur not able to do the usal stuffs. IS THEIR ANY WAY OUT TO BUILD OUR POWERS? --- tshindle@... wrote: > I know the feeling. I can tell my arms are getting > weaker, too. I used to shave my head but about 2 > years ago I was half way through shaving and my arms > just quit. I had to wear a hat for the rest of the > day and finish it after I got some rest. Now I > don't feel like I could even get half way through. > Also spilled about half a pot of coffee at work > because I thought I could lift it like I did before. > Tom > > -------------- Original message -------------- > Just wanted to say I am type 3 and about your age > (33), but female, so I don't know if you guys just > wanted male perspectives. I am noticing more things > becoming so much harder at this age. My arms get > so tired at work I have to stop for a few, which is > REALLY hard for me to do! Today I noticed my arm > getting tired from just driving my chair- that never > happened before. It sux. > > [Non-text portions of this message have been > removed] > > Love u __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2005 Report Share Posted December 10, 2005 it's been very enlightening to read about people's fear and terror about growing weaker. i have had deep frustration, anger, and sometimes severe depression about my constantly growing weaker, but i haven't been afraid. i always kinda assumed that those of us with progressive disabilities were less afraid because we already know generally what to expect. i've always been afraid of the unknown...and specifically i've had fear and panic attacks related to individual situations such as, will this bought of bronchitis be the one that kills me?...will i die under this anesthesia?...or what if i can't talk when i wake up and can't tell people what hurts or what i need? since i was 10 or 11 i just believed i would figure out how to adapt to each level of weakness with one adaptation or another. reading some of your descriptions of fear and terror will certainly make me re-examine my feelings when i'm frustrated, angry or depressed. maybe fear is deeper underneath. hmm. thank you for sharing your experiences. alana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2005 Report Share Posted December 10, 2005 my first sign of weakness came around the age of 35; I am a type 2, spine fused at age 10. My kid days strength levelled off once my body grew up; I am 5.1 and 102lbs. I am now on Mestinon as a way to deminish my tiredness as it helps my MNs do their job, but the regular aging process will be a tuff journey. It will kill more MNs as all humans who age, but we SMA'ers didnt get our fair quota so its more noticeable when we age. A positive mindset is a must. Take care, Angie fast approaching 41 (dec 21st) On 2005.12.10 15:58, Meg W. wrote: > People don't understand how terrifying this losing of function is for us. > I am grateful for finding my way to this group. I used to feel so alone in > my struggles. But now I see that there are so many of us, who deal with > this heartache, yet we continue to go on and live, as hard and pointless as > it seems sometimes. I think we hold each other's spirits up since we share > the same pain. We also share our triumphs and life's joys, and that builds > up more hope in us all. > > We're so far apart physically, yet so very close emotionally. > > God Bless, > Meg > > Re: Tom a question for you > > Hi Deepa, > I don't know of any way to increase our strength. I think the best we can > do is try to maintain the strength that we have. Try not to burn yourself > out trying to do too much and take care of your health! Sorry I don't have > a better answer for you but if you are having a hard time with something in > particular, you should post a question to the group. Chances are someone > else is struggling with the same issue. Good luck! > Tom > > -------------- Original message -------------- > From: deepa narasimhan <deepatarzan@...> > Hi Tom > > Im from india.. I have SMA TYPE II.. Im 24yrs old..My > name is DEEPA.. > Im suffering weakness, the same u both r goin thru . > Just not able to lift my coffee cup, typing on keys is > harder.. > Life seriously sucks when things go weaker and ur not > able to do the usal stuffs. > > IS THEIR ANY WAY OUT TO BUILD OUR POWERS? > > --- tshindle@... wrote: > > I know the feeling. I can tell my arms are getting > > weaker, too. I used to shave my head but about 2 > > years ago I was half way through shaving and my arms > > just quit. I had to wear a hat for the rest of the > > day and finish it after I got some rest. Now I > > don't feel like I could even get half way through. > > Also spilled about half a pot of coffee at work > > because I thought I could lift it like I did before. > > Tom > > > > -------------- Original message -------------- > > Just wanted to say I am type 3 and about your age > > (33), but female, so I don't know if you guys just > > wanted male perspectives. I am noticing more things > > becoming so much harder at this age. My arms get > > so tired at work I have to stop for a few, which is > > REALLY hard for me to do! Today I noticed my arm > > getting tired from just driving my chair- that never > > happened before. It sux. > > > > [Non-text portions of this message have been > > removed] > > Love u > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2005 Report Share Posted December 11, 2005 Angie, Do you think Mestinon could help with my arm pain & weakness??? I've never taken it before. Meg Re: Tom a question for you > > Hi Deepa, > I don't know of any way to increase our strength. I think the best we can > do is try to maintain the strength that we have. Try not to burn yourself > out trying to do too much and take care of your health! Sorry I don't have > a better answer for you but if you are having a hard time with something in > particular, you should post a question to the group. Chances are someone > else is struggling with the same issue. Good luck! > Tom > > -------------- Original message -------------- > From: deepa narasimhan <deepatarzan@...> > Hi Tom > > Im from india.. I have SMA TYPE II.. Im 24yrs old..My > name is DEEPA.. > Im suffering weakness, the same u both r goin thru . > Just not able to lift my coffee cup, typing on keys is > harder.. > Life seriously sucks when things go weaker and ur not > able to do the usal stuffs. > > IS THEIR ANY WAY OUT TO BUILD OUR POWERS? > > --- tshindle@... wrote: > > I know the feeling. I can tell my arms are getting > > weaker, too. I used to shave my head but about 2 > > years ago I was half way through shaving and my arms > > just quit. I had to wear a hat for the rest of the > > day and finish it after I got some rest. Now I > > don't feel like I could even get half way through. > > Also spilled about half a pot of coffee at work > > because I thought I could lift it like I did before. > > Tom > > > > -------------- Original message -------------- > > Just wanted to say I am type 3 and about your age > > (33), but female, so I don't know if you guys just > > wanted male perspectives. I am noticing more things > > becoming so much harder at this age. My arms get > > so tired at work I have to stop for a few, which is > > REALLY hard for me to do! Today I noticed my arm > > getting tired from just driving my chair- that never > > happened before. It sux. > > > > [Non-text portions of this message have been > > removed] > > Love u > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2006 Report Share Posted May 31, 2006 Does anyone have weakening in thier biceps? I've noticed mine becoming weaker lately. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2006 Report Share Posted June 1, 2006 I am sure I have weakness in my biceps. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2006 Report Share Posted June 1, 2006 , I'm not feeling weakness in my biceps, but I am feeling weakness in my quadriceps. Have you felt that yet? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2006 Report Share Posted June 1, 2006 Hello , For many years now I've had it. EdM from NH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2006 Report Share Posted June 1, 2006 Yes, my arms now get tired doing stupid stuff like repetititous laundry folding and hanging, although my arms are strong when getting me up and down steps. Biceps were probably the first to weaken, which I was able to determine when lifting weights. Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2006 Report Share Posted June 1, 2006 I'm defintly weak in my quads. When I was in my 220's I could bike ride 30 miles and lift 100lbs doing leg extentions. Now I can't step up stairs and struggle to lift 10 lbs. Quote Link to comment Share on other sites More sharing options...
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