Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 Hi Larry, I'm not a man, but my husband is (well THAT was the king of all understatements!) I'm part of this group because I have Dercum's Disease, a very rare autoimmune disease, similar to fibromyalgia, but with the addition of lots of painful tumors. My husband has Parkinson's disease. I'm answering your post because Ron thought his life was over when he was diagnosed. But then he decided that he would make it the beginning of his new life instead. He works very diligently doing his exercises, started studying history and other subjects he was only slightly interested in before, plays golf, volunteers at the senior center, and generally stays pretty active. Yes, he has me and our family which consists of a daughter, son in law, 4-year old grandson and 16-month old triplets, but mostly it is his attitude that has made the difference. He has his bad days when he has little energy, same as me, but he uses those days to catch up on his reading and watching the old movies he enjoys, and not feeling one bit sorry for himself. He is an inspiration to me, and has taught me a lot about courage so that I don't give up when the pain seems too much for me to bear. He, too, is well-educated, worked at Abbott Laboratories for 37 years as a designer, but found out that there's still a lot more to life than the corporate world--thank God! I hope you find the support and encouragement you need in this group. Judi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 Larry, There are guys in this group. I've been a member for 2 1/2 to 3 years or something like that. I've had RA now for 3 years and it came with a healthy dose of FMS and some kind of degenerative spine problem. Then the RA started affecting my heart and I got some kind of cronic anemia. You will find the group here probably one of the most supportive on the internet. There are several guys here also. I went from a gym 3 times a week, do it all, single parent, run your own business to a couldn't get out of bed, crawel on your stomach because of pain type of guy over night. Working with several Rheumatologists, and different drug menus, I've made it back to what I was with some adjustments. For example: I use to love to play the piano and for several years I couldn't. Now I can even though some of my fingers aren't straight any more. Another, I go to the gym 3 times a week and it is painful but I keep the pain from the RA and FMS under control by doing that. I can't use free weights but I'm wearing the machines out. RA can control you or you can control it. There are ways around everything. NY - TERRY A Guy PS Feel free to let your frustrations out here everyone does and listens also Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 Can you do any volunteer work that doesn't require anything physical? Maybe just a few hours a week somewhere. I have found that helping other people helps me a lot. It shows me at my worst times that maybe I don't have it so bad after all. There is always someone with worse problems. Schools always need help with tutoring during class time, our local hospital needs someone to hold the premature babies or the babies that maybe no one wants. Our senior citizen center always like younger people around. I would do things like that if I didn't have to work. But, it would have to be in the afternoon because it would take me that long to get myself awake and together. Becky [ ] Looking for support hi, first of all, this is a very hard thing for me to do. I have always been fiercely independent and able to provide for myself. Last week, two and half years after I applied, I got my SS disability approved. I really expected that to be a great day. Instead it has been a huge blow of reality. One that i have tried to avoid at any cost as long as I could. Im only 41 yo. I was extremely active physically, Over educated and financialy comfortable. Ive weathered some other life altering events in my life, pretty well. But this one is a fight I cant win, and Mr, Control Freak (me) hates that. My biggest fear in life was for something to happen to me, and then to be trapped in my body. I thought, stroke, trauma, ect. never RA. Im seeing my doctor and therapist and they are wonderful. But I need to find a support group with people who are living and have experienced this. I scanned the messages and tried the search box, to find some other men who I can I dentify with, but found very few. Right now the only things I have to rely on are my three dogs, being recently single, and without any family I can rely on. If any one has any suggestions, I'd appreciate hearing them Thanks Larry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 Larry, you might also spend some time at your local animal shelter just loving the animals. I tried that a few times but it actually depressed me so I had to quit. Either that or I would have brought them all home with me! To just sit and cuddle an animal and give it a little love is a wonderful thing to do. Becky [ ] Re: Looking for support Hi Larry, I'm not a man, but my husband is (well THAT was the king of all understatements!) I'm part of this group because I have Dercum's Disease, a very rare autoimmune disease, similar to fibromyalgia, but with the addition of lots of painful tumors. My husband has Parkinson's disease. I'm answering your post because Ron thought his life was over when he was diagnosed. But then he decided that he would make it the beginning of his new life instead. He works very diligently doing his exercises, started studying history and other subjects he was only slightly interested in before, plays golf, volunteers at the senior center, and generally stays pretty active. Yes, he has me and our family which consists of a daughter, son in law, 4-year old grandson and 16-month old triplets, but mostly it is his attitude that has made the difference. He has his bad days when he has little energy, same as me, but he uses those days to catch up on his reading and watching the old movies he enjoys, and not feeling one bit sorry for himself. He is an inspiration to me, and has taught me a lot about courage so that I don't give up when the pain seems too much for me to bear. He, too, is well-educated, worked at Abbott Laboratories for 37 years as a designer, but found out that there's still a lot more to life than the corporate world--thank God! I hope you find the support and encouragement you need in this group. Judi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 Hi Larry, I'm sorry to hear about your diagnose, but glad you found the group. There are a few guys here, but were all here for the same reason, so that is what counts. I am also 41, and on disability, so I know what your going through. I wasn't quite ready to give up being the active hyper person that I use to be. We just don't have a choice, and it's hard to face. You just take one day at a time, and that is all you can do, Tawny > hi, > first of all, this is a very hard thing for me to do. I have always > been fiercely independent and able to provide for myself. Last week, > two and half years after I applied, I got my SS disability approved. > I really expected that to be a great day. Instead it has been a huge > blow of reality. One that i have tried to avoid at any cost as long > as I could. > > Im only 41 yo. I was extremely active physically, Over educated and > financialy comfortable. Ive weathered some other life altering events > in my life, pretty well. But this one is a fight I cant win, and Mr, > Control Freak (me) hates that. My biggest fear in life was for > something to happen to me, and then to be trapped in my body. I > thought, stroke, trauma, ect. never RA. > > Im seeing my doctor and therapist and they are wonderful. But I need > to find a support group with people who are living and have > experienced this. I scanned the messages and tried the search box, to > find some other men who I can I dentify with, but found very few. > Right now the only things I have to rely on are my three dogs, being > recently single, and without any family I can rely on. If any one has > any suggestions, I'd appreciate hearing them > > Thanks > > Larry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 Becky, I tried that, and cried for hours till they sent me home. It takes such a special person to work there, doesn't it? > Larry, you might also spend some time at your local animal shelter just loving the animals. I tried that a few times but it actually depressed me so I had to quit. Either that or I would have brought them all home with me! To just sit and cuddle an animal and give it a little love is a wonderful thing to do. > > Becky > [ ] Re: Looking for support > > > Hi Larry, > > I'm not a man, but my husband is (well THAT was the king of all > understatements!) I'm part of this group because I have Dercum's > Disease, a very rare autoimmune disease, similar to fibromyalgia, but > with the addition of lots of painful tumors. My husband has > Parkinson's disease. I'm answering your post because Ron thought his > life was over when he was diagnosed. But then he decided that he > would make it the beginning of his new life instead. He works very > diligently doing his exercises, started studying history and other > subjects he was only slightly interested in before, plays golf, > volunteers at the senior center, and generally stays pretty active. > > Yes, he has me and our family which consists of a daughter, son in > law, 4-year old grandson and 16-month old triplets, but mostly it is > his attitude that has made the difference. He has his bad days when > he has little energy, same as me, but he uses those days to catch up > on his reading and watching the old movies he enjoys, and not feeling > one bit sorry for himself. He is an inspiration to me, and has > taught me a lot about courage so that I don't give up when the pain > seems too much for me to bear. He, too, is well-educated, worked at > Abbott Laboratories for 37 years as a designer, but found out that > there's still a lot more to life than the corporate world--thank God! > > I hope you find the support and encouragement you need in this group. > > Judi > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 It sure does. I could not do it. I would have had to take a pillow and blanket and just lay on the floor with all of the animals. Their eyes look so sad and they all want your attention. It was awful but at the same time it felt so good to give them some human contact. Becky [ ] Re: Looking for support > > > Hi Larry, > > I'm not a man, but my husband is (well THAT was the king of all > understatements!) I'm part of this group because I have Dercum's > Disease, a very rare autoimmune disease, similar to fibromyalgia, but > with the addition of lots of painful tumors. My husband has > Parkinson's disease. I'm answering your post because Ron thought his > life was over when he was diagnosed. But then he decided that he > would make it the beginning of his new life instead. He works very > diligently doing his exercises, started studying history and other > subjects he was only slightly interested in before, plays golf, > volunteers at the senior center, and generally stays pretty active. > > Yes, he has me and our family which consists of a daughter, son in > law, 4-year old grandson and 16-month old triplets, but mostly it is > his attitude that has made the difference. He has his bad days when > he has little energy, same as me, but he uses those days to catch up > on his reading and watching the old movies he enjoys, and not feeling > one bit sorry for himself. He is an inspiration to me, and has > taught me a lot about courage so that I don't give up when the pain > seems too much for me to bear. He, too, is well-educated, worked at > Abbott Laboratories for 37 years as a designer, but found out that > there's still a lot more to life than the corporate world--thank God! > > I hope you find the support and encouragement you need in this group. > > Judi > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 Welcome to the group, Larry! Sorry this has been a very rough period for you. Do you have an excellent rheumatologist who is treating your RA aggressively? I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] Looking for support > hi, > first of all, this is a very hard thing for me to do. I have always > been fiercely independent and able to provide for myself. Last week, > two and half years after I applied, I got my SS disability approved. > I really expected that to be a great day. Instead it has been a huge > blow of reality. One that i have tried to avoid at any cost as long > as I could. > > Im only 41 yo. I was extremely active physically, Over educated and > financialy comfortable. Ive weathered some other life altering events > in my life, pretty well. But this one is a fight I cant win, and Mr, > Control Freak (me) hates that. My biggest fear in life was for > something to happen to me, and then to be trapped in my body. I > thought, stroke, trauma, ect. never RA. > > Im seeing my doctor and therapist and they are wonderful. But I need > to find a support group with people who are living and have > experienced this. I scanned the messages and tried the search box, to > find some other men who I can I dentify with, but found very few. > Right now the only things I have to rely on are my three dogs, being > recently single, and without any family I can rely on. If any one has > any suggestions, I'd appreciate hearing them > > Thanks > > Larry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 When was he diagnosed with Parkinsons? I have children with Tourette Syndrome and have been hearing of studies, meds, etc. where somehow the two might be somehow connected. I've also been told that as children mature into adults, the symptoms of Tourette Syndrome go away, only in the later years to sometimes appear as Parkinsons. Becky > Hi Larry, > > I'm not a man, but my husband is (well THAT was the king of all > understatements!) I'm part of this group because I have Dercum's > Disease, a very rare autoimmune disease, similar to fibromyalgia, but > with the addition of lots of painful tumors. My husband has > Parkinson's disease. I'm answering your post because Ron thought his > life was over when he was diagnosed. But then he decided that he > would make it the beginning of his new life instead. He works very > diligently doing his exercises, started studying history and other > subjects he was only slightly interested in before, plays golf, > volunteers at the senior center, and generally stays pretty active. > > Yes, he has me and our family which consists of a daughter, son in > law, 4-year old grandson and 16-month old triplets, but mostly it is > his attitude that has made the difference. He has his bad days when > he has little energy, same as me, but he uses those days to catch up > on his reading and watching the old movies he enjoys, and not feeling > one bit sorry for himself. He is an inspiration to me, and has > taught me a lot about courage so that I don't give up when the pain > seems too much for me to bear. He, too, is well-educated, worked at > Abbott Laboratories for 37 years as a designer, but found out that > there's still a lot more to life than the corporate world--thank God! > > I hope you find the support and encouragement you need in this group. > > Judi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2004 Report Share Posted July 11, 2004 -- don't know about Tuorettes symptoms going away- have a cworker that has it-and he must be in his late 30's. Becky <natesmom4@...> wrote: > When was he diagnosed with Parkinsons? I have > children with > Tourette Syndrome and have been hearing of studies, > meds, etc. where > somehow the two might be somehow connected. I've > also been told > that as children mature into adults, the symptoms of > Tourette > Syndrome go away, only in the later years to > sometimes appear as > Parkinsons. > > Becky > > > > Hi Larry, > > > > I'm not a man, but my husband is (well THAT was > the king of all > > understatements!) I'm part of this group because > I have Dercum's > > Disease, a very rare autoimmune disease, similar > to fibromyalgia, > but > > with the addition of lots of painful tumors. My > husband has > > Parkinson's disease. I'm answering your post > because Ron thought > his > > life was over when he was diagnosed. But then he > decided that he > > would make it the beginning of his new life > instead. He works > very > > diligently doing his exercises, started studying > history and other > > subjects he was only slightly interested in > before, plays golf, > > volunteers at the senior center, and generally > stays pretty active. > > > > Yes, he has me and our family which consists of a > daughter, son in > > law, 4-year old grandson and 16-month old > triplets, but mostly it > is > > his attitude that has made the difference. He has > his bad days > when > > he has little energy, same as me, but he uses > those days to catch > up > > on his reading and watching the old movies he > enjoys, and not > feeling > > one bit sorry for himself. He is an inspiration > to me, and has > > taught me a lot about courage so that I don't give > up when the > pain > > seems too much for me to bear. He, too, is > well-educated, worked > at > > Abbott Laboratories for 37 years as a designer, > but found out that > > there's still a lot more to life than the > corporate world--thank > God! > > > > I hope you find the support and encouragement you > need in this > group. > > > > Judi > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2004 Report Share Posted July 11, 2004 hey pat are you related to Bullock? Bullock <bullockpe@...> wrote:-- don't know about Tuorettes symptoms going away- have a cworker that has it-and he must be in his late 30's. Becky <natesmom4@...> wrote: > When was he diagnosed with Parkinsons? I have > children with > Tourette Syndrome and have been hearing of studies, > meds, etc. where > somehow the two might be somehow connected. I've > also been told > that as children mature into adults, the symptoms of > Tourette > Syndrome go away, only in the later years to > sometimes appear as > Parkinsons. > > Becky > > > > Hi Larry, > > > > I'm not a man, but my husband is (well THAT was > the king of all > > understatements!) I'm part of this group because > I have Dercum's > > Disease, a very rare autoimmune disease, similar > to fibromyalgia, > but > > with the addition of lots of painful tumors. My > husband has > > Parkinson's disease. I'm answering your post > because Ron thought > his > > life was over when he was diagnosed. But then he > decided that he > > would make it the beginning of his new life > instead. He works > very > > diligently doing his exercises, started studying > history and other > > subjects he was only slightly interested in > before, plays golf, > > volunteers at the senior center, and generally > stays pretty active. > > > > Yes, he has me and our family which consists of a > daughter, son in > > law, 4-year old grandson and 16-month old > triplets, but mostly it > is > > his attitude that has made the difference. He has > his bad days > when > > he has little energy, same as me, but he uses > those days to catch > up > > on his reading and watching the old movies he > enjoys, and not > feeling > > one bit sorry for himself. He is an inspiration > to me, and has > > taught me a lot about courage so that I don't give > up when the > pain > > seems too much for me to bear. He, too, is > well-educated, worked > at > > Abbott Laboratories for 37 years as a designer, > but found out that > > there's still a lot more to life than the > corporate world--thank > God! > > > > I hope you find the support and encouragement you > need in this > group. > > > > Judi > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2004 Report Share Posted July 12, 2004 I wish I was- then I could work at something I find personally fullfilling rather than what society is actually willing to pay for.My job is so boring its mind numbing.--- B <reflectivepoet@...> wrote: > hey pat are you related to Bullock? > > Bullock <bullockpe@...> wrote:-- > don't know about Tuorettes symptoms going away- > have a cworker that has it-and he must be in his > late > 30's. Becky <natesmom4@...> wrote: > > When was he diagnosed with Parkinsons? I have > > children with > > Tourette Syndrome and have been hearing of > studies, > > meds, etc. where > > somehow the two might be somehow connected. I've > > also been told > > that as children mature into adults, the symptoms > of > > Tourette > > Syndrome go away, only in the later years to > > sometimes appear as > > Parkinsons. > > > > Becky > > > > > > > Hi Larry, > > > > > > I'm not a man, but my husband is (well THAT was > > the king of all > > > understatements!) I'm part of this group > because > > I have Dercum's > > > Disease, a very rare autoimmune disease, similar > > to fibromyalgia, > > but > > > with the addition of lots of painful tumors. My > > husband has > > > Parkinson's disease. I'm answering your post > > because Ron thought > > his > > > life was over when he was diagnosed. But then > he > > decided that he > > > would make it the beginning of his new life > > instead. He works > > very > > > diligently doing his exercises, started studying > > history and other > > > subjects he was only slightly interested in > > before, plays golf, > > > volunteers at the senior center, and generally > > stays pretty active. > > > > > > Yes, he has me and our family which consists of > a > > daughter, son in > > > law, 4-year old grandson and 16-month old > > triplets, but mostly it > > is > > > his attitude that has made the difference. He > has > > his bad days > > when > > > he has little energy, same as me, but he uses > > those days to catch > > up > > > on his reading and watching the old movies he > > enjoys, and not > > feeling > > > one bit sorry for himself. He is an inspiration > > to me, and has > > > taught me a lot about courage so that I don't > give > > up when the > > pain > > > seems too much for me to bear. He, too, is > > well-educated, worked > > at > > > Abbott Laboratories for 37 years as a designer, > > but found out that > > > there's still a lot more to life than the > > corporate world--thank > > God! > > > > > > I hope you find the support and encouragement > you > > need in this > > group. > > > > > > Judi > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2004 Report Share Posted July 12, 2004 It's not that they go away totally. It often lessens with maturity. We have noticed it worsening during puberty. Becky Re: [ ] Re: Looking for support hey pat are you related to Bullock? Bullock <bullockpe@...> wrote:-- don't know about Tuorettes symptoms going away- have a cworker that has it-and he must be in his late 30's. Becky <natesmom4@...> wrote: > When was he diagnosed with Parkinsons? I have > children with > Tourette Syndrome and have been hearing of studies, > meds, etc. where > somehow the two might be somehow connected. I've > also been told > that as children mature into adults, the symptoms of > Tourette > Syndrome go away, only in the later years to > sometimes appear as > Parkinsons. > > Becky > > > > Hi Larry, > > > > I'm not a man, but my husband is (well THAT was > the king of all > > understatements!) I'm part of this group because > I have Dercum's > > Disease, a very rare autoimmune disease, similar > to fibromyalgia, > but > > with the addition of lots of painful tumors. My > husband has > > Parkinson's disease. I'm answering your post > because Ron thought > his > > life was over when he was diagnosed. But then he > decided that he > > would make it the beginning of his new life > instead. He works > very > > diligently doing his exercises, started studying > history and other > > subjects he was only slightly interested in > before, plays golf, > > volunteers at the senior center, and generally > stays pretty active. > > > > Yes, he has me and our family which consists of a > daughter, son in > > law, 4-year old grandson and 16-month old > triplets, but mostly it > is > > his attitude that has made the difference. He has > his bad days > when > > he has little energy, same as me, but he uses > those days to catch > up > > on his reading and watching the old movies he > enjoys, and not > feeling > > one bit sorry for himself. He is an inspiration > to me, and has > > taught me a lot about courage so that I don't give > up when the > pain > > seems too much for me to bear. He, too, is > well-educated, worked > at > > Abbott Laboratories for 37 years as a designer, > but found out that > > there's still a lot more to life than the > corporate world--thank > God! > > > > I hope you find the support and encouragement you > need in this > group. > > > > Judi > > Quote Link to comment Share on other sites More sharing options...
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