Guest guest Posted March 20, 2005 Report Share Posted March 20, 2005 Kim, I've never found an explanation that satisfies this kind of skeptic. People see what they want to see. If they aren't open to understanding, no amount of words can change that. I've also come to see that the way people interpret my situation reveals their attitudes toward illness and their own particular hang ups. The people who struggle with depression think I don't go out much because I'm secretly depressed. The people who tend to be hypochondriacs or malingerers think they know exactly how I feel and insist on using words that trivialize my situation like " I'm tired all the time too. " (I never use the word " tired. " It fuels misunderstanding.) The people who have phobias think I don't go out much because I have a secret phobia. The people who are athletes think if I just took up a good exercise program I'd be fine. The people who sell supplements call me in the hospital, sure I would be fine if I just took their brand. None of these people know anything about my disease, of course. In fact, I'd say the less people know about me and my disease, the more likely they know exactly what I need. I don't get this much any more, but when I do, I just smile and say no thank you. Sometimes I rattle off a bunch of medical terms to intimidate (just for fun). A few times I have tried to educate briefly on the difference between fatigue and weakness. It never seems to take--like a bad inoculation. I give up! People will think what they want to think--it's their problem, not mine. Sometimes I think this wouldn't happen as much if my disease had more name recognition, but I'm not sure that's true either. People with MS or muscular dystrophy sometimes get the same comments. B _____ From: klaga5 Sent: Sunday, March 20, 2005 12:03 PM To: Subject: explaining to people I was wondering how people here explain their disease to others. I was talking to a guy last night at a church function, and this morning he says to me " I see you survived sitting there last night " . Ok, so now he thinks I'm a liar. I guess this is the same as the dirty looks we get for having handicapped placards. Why do people have such a hard time believing you can look ok, but be weak? Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2005 Report Share Posted March 20, 2005 This is so very hard to explain to people, yes saying it is a form of Muscular Dystrophy does help, but for me many people want so much more info. I inparticular have MELAS with a very high Lactic Acid level, I often ask if they know how it feels after they have been running and get a cramp? I then tell them I get these cramps sometimes just walking 30 feet. I also try to explain it by comparing it to an electrical outage.....no power. The typical response I get is " You look so great " though, my answer, I feel like a I have just been rolled over by a steamroller!!!!!! Good luck Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2005 Report Share Posted March 20, 2005 This is so very hard to explain to people, yes saying it is a form of Muscular Dystrophy does help, but for me many people want so much more info. I inparticular have MELAS with a very high Lactic Acid level, I often ask if they know how it feels after they have been running and get a cramp? I then tell them I get these cramps sometimes just walking 30 feet. I also try to explain it by comparing it to an electrical outage.....no power. The typical response I get is " You look so great " though, my answer, I feel like a I have just been rolled over by a steamroller!!!!!! Good luck Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2005 Report Share Posted March 20, 2005 I tell people that I have a form of muscular dystrophy. When asked how I feel, I usually say " hanging in there " , unless it is someone who really wants to know. When I have had to walk due to car repair or wheelchair problem and someone says that I must be better as I am walking, I usually just say that I will suffer the consequencies later in the day. If these kinds of things don't work, I just ignore their comments as they really can't care about me to make additional insensitive remarks. Too bad adults can't be like children - they ask a direct question and once told accept it and move on. laurie On Sun, 20 Mar 2005 12:39:28 -0600, Barbara Seaman wheatchild@...> wrote: > > Kim, I've never found an explanation that satisfies this kind of skeptic. > People see what they want to see. If they aren't open to understanding, no > amount of words can change that. I've also come to see that the way people > interpret my situation reveals their attitudes toward illness and their own > particular hang ups. The people who struggle with depression think I don't > go out much because I'm secretly depressed. The people who tend to be > hypochondriacs or malingerers think they know exactly how I feel and insist > on using words that trivialize my situation like " I'm tired all the time > too. " (I never use the word " tired. " It fuels misunderstanding.) The people > who have phobias think I don't go out much because I have a secret phobia. > The people who are athletes think if I just took up a good exercise program > I'd be fine. The people who sell supplements call me in the hospital, sure > I > would be fine if I just took their brand. None of these people know > anything > about my disease, of course. In fact, I'd say the less people know about me > and my disease, the more likely they know exactly what I need. I don't get > this much any more, but when I do, I just smile and say no thank you. > Sometimes I rattle off a bunch of medical terms to intimidate (just for > fun). A few times I have tried to educate briefly on the difference between > fatigue and weakness. It never seems to take--like a bad inoculation. I > give > up! People will think what they want to think--it's their problem, not > mine. > Sometimes I think this wouldn't happen as much if my disease had more name > recognition, but I'm not sure that's true either. People with MS or > muscular > dystrophy sometimes get the same comments. > > > > B > > > > _____ > > From: klaga5 > Sent: Sunday, March 20, 2005 12:03 PM > To: > Subject: explaining to people > > > > > I was wondering how people here explain their disease to others. I > was talking to a guy last night at a church function, and this > morning he says to me " I see you survived sitting there last > night " . Ok, so now he thinks I'm a liar. I guess this is the same > as the dirty looks we get for having handicapped placards. Why do > people have such a hard time believing you can look ok, but be > weak? > > > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail > is entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with > their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2005 Report Share Posted March 20, 2005 I also just say that I have a form of Muscular Dystrophy. When they ask how I'm feeling - I simply say that I have good days and bad days. Alice > I tell people that I have a form of muscular dystrophy. When asked how > I feel, I usually say " hanging in there " , unless it is someone who > really wants to know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2005 Report Share Posted March 20, 2005 Do we really have a form of Muscular Dystrophy??? That term " Muscular Dystrophy " really jumped out at me. I get frustrated trying to explain my illness to people. My parents don't seem to understand even though I have tried to expain it to them many times...maybe it is because they are old. Yesterday they saw me with my husband in the bookstore (only a 15 min visit mind you) and later on the phone they both said... " but you looked good today when we saw you " . I usually say I have a defect in energy production in my cells. Maybe people could relate better to MD. Lea (complex I) Re: explaining to people I also just say that I have a form of Muscular Dystrophy. When they ask how I'm feeling - I simply say that I have good days and bad days. Alice > I tell people that I have a form of muscular dystrophy. When asked how > I feel, I usually say " hanging in there " , unless it is someone who > really wants to know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2005 Report Share Posted March 20, 2005 Both my disorders, CPT deficiency and mito, are included under the umbrella of research funded by MDA, but I do not have muscular dystrophy as understood by either the layperson or medical professionals. Therefore I choose not to use this explanation, but others do. It's an individual decision. If people want a name, I give them my specific disease labels. Once many years ago after my CPT diagnosis, I told a person who was pressing for information that it was a form of muscular dystrophy. The person was horrified (the term carries terrible connotations) and my husband was quite disgusted with me, thinking I was trying to garner sympathy. I have never done it again! However, YMMV. It's up to each person. Barbara _____ From: Lea Sent: Sunday, March 20, 2005 2:45 PM To: Subject: Re: explaining to people Do we really have a form of Muscular Dystrophy??? That term " Muscular Dystrophy " really jumped out at me. I get frustrated trying to explain my illness to people. My parents don't seem to understand even though I have tried to expain it to them many times...maybe it is because they are old. Yesterday they saw me with my husband in the bookstore (only a 15 min visit mind you) and later on the phone they both said... " but you looked good today when we saw you " . I usually say I have a defect in energy production in my cells. Maybe people could relate better to MD. Lea (complex I) Re: explaining to people I also just say that I have a form of Muscular Dystrophy. When they ask how I'm feeling - I simply say that I have good days and bad days. Alice > I tell people that I have a form of muscular dystrophy. When asked how > I feel, I usually say " hanging in there " , unless it is someone who > really wants to know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2005 Report Share Posted March 20, 2005 Mitochondrial Myopathy is listed under the umbrella of the Muscular Dystrophy Association. There are 40 Diseases noted. The MDA deals with the neuromuscular part of the disease and you can receive services from the MDA if you see one of their doctors. This does not mean that the doctor you see is going to be well versed on the disease. Even within the MDA - There are only a few who can be considered knowledgeable about Mito. If you have a diagnosis of Mito - you do qualify for their services though. Go to http://www.mdausa.org and you can find information there. Alice > Do we really have a form of Muscular Dystrophy??? That term " Muscular Dystrophy " really jumped out at me. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2005 Report Share Posted March 20, 2005 Indeed it is a personal choice, Barbara. I just find that people look at me with huge question marks on their faces if I say I have Mitochondrial Disease and I can't blame them. It's a mouthfull just to say it. Instead - I just say I have a form of Muscular Dystrophy and really have no further questions asked from most people. It's the easy way out for me. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2005 Report Share Posted March 20, 2005 Barbara, Thank you for your response. The only thing I've come up with that I think is close in explaining it, is that I'm weak, and like budgeting money, I have to budget my energy, or I'll run out, and have to recuperate for days. I know these are weird diseases, but you'd think having an MDA doctor say you have a muscle disease would be enough for people. Kim > Kim, I've never found an explanation that satisfies this kind of skeptic. > People see what they want to see. If they aren't open to understanding, no > amount of words can change that. I've also come to see that the way people > interpret my situation reveals their attitudes toward illness and their own > particular hang ups. The people who struggle with depression think I don't > go out much because I'm secretly depressed. The people who tend to be > hypochondriacs or malingerers think they know exactly how I feel and insist > on using words that trivialize my situation like " I'm tired all the time > too. " (I never use the word " tired. " It fuels misunderstanding.) The people > who have phobias think I don't go out much because I have a secret phobia. > The people who are athletes think if I just took up a good exercise program > I'd be fine. The people who sell supplements call me in the hospital, sure I > would be fine if I just took their brand. None of these people know anything > about my disease, of course. In fact, I'd say the less people know about me > and my disease, the more likely they know exactly what I need. I don't get > this much any more, but when I do, I just smile and say no thank you. > Sometimes I rattle off a bunch of medical terms to intimidate (just for > fun). A few times I have tried to educate briefly on the difference between > fatigue and weakness. It never seems to take--like a bad inoculation. I give > up! People will think what they want to think--it's their problem, not mine. > Sometimes I think this wouldn't happen as much if my disease had more name > recognition, but I'm not sure that's true either. People with MS or muscular > dystrophy sometimes get the same comments. > > > > B > > > > _____ > > From: klaga5 [mailto:klaga5@y...] > Sent: Sunday, March 20, 2005 12:03 PM > To: > Subject: explaining to people > > > > > I was wondering how people here explain their disease to others. I > was talking to a guy last night at a church function, and this > morning he says to me " I see you survived sitting there last > night " . Ok, so now he thinks I'm a liar. I guess this is the same > as the dirty looks we get for having handicapped placards. Why do > people have such a hard time believing you can look ok, but be > weak? > > > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail > is entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with > their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2005 Report Share Posted March 20, 2005 Barbara, Thank you for your response. The only thing I've come up with that I think is close in explaining it, is that I'm weak, and like budgeting money, I have to budget my energy, or I'll run out, and have to recuperate for days. I know these are weird diseases, but you'd think having an MDA doctor say you have a muscle disease would be enough for people. Kim > Kim, I've never found an explanation that satisfies this kind of skeptic. > People see what they want to see. If they aren't open to understanding, no > amount of words can change that. I've also come to see that the way people > interpret my situation reveals their attitudes toward illness and their own > particular hang ups. The people who struggle with depression think I don't > go out much because I'm secretly depressed. The people who tend to be > hypochondriacs or malingerers think they know exactly how I feel and insist > on using words that trivialize my situation like " I'm tired all the time > too. " (I never use the word " tired. " It fuels misunderstanding.) The people > who have phobias think I don't go out much because I have a secret phobia. > The people who are athletes think if I just took up a good exercise program > I'd be fine. The people who sell supplements call me in the hospital, sure I > would be fine if I just took their brand. None of these people know anything > about my disease, of course. In fact, I'd say the less people know about me > and my disease, the more likely they know exactly what I need. I don't get > this much any more, but when I do, I just smile and say no thank you. > Sometimes I rattle off a bunch of medical terms to intimidate (just for > fun). A few times I have tried to educate briefly on the difference between > fatigue and weakness. It never seems to take--like a bad inoculation. I give > up! People will think what they want to think--it's their problem, not mine. > Sometimes I think this wouldn't happen as much if my disease had more name > recognition, but I'm not sure that's true either. People with MS or muscular > dystrophy sometimes get the same comments. > > > > B > > > > _____ > > From: klaga5 [mailto:klaga5@y...] > Sent: Sunday, March 20, 2005 12:03 PM > To: > Subject: explaining to people > > > > > I was wondering how people here explain their disease to others. I > was talking to a guy last night at a church function, and this > morning he says to me " I see you survived sitting there last > night " . Ok, so now he thinks I'm a liar. I guess this is the same > as the dirty looks we get for having handicapped placards. Why do > people have such a hard time believing you can look ok, but be > weak? > > > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail > is entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with > their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2005 Report Share Posted March 20, 2005 Let's face it, most people are nosey and don't NEED to know ! Depending upon the person, I either tell them that I have a form of MD (which everyone seems to be at least vaguely familiar with) or I go further into explaining mito. It all depends upon how receptive I think they will be. I've also told nosey people that I don't talk about my medical situation with strangers. Sometimes peple ask me if I've injured my knee when they see me walking with a cane and I usually just say " no. " They don't need any more information than that ! bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2005 Report Share Posted March 20, 2005 Let's face it, most people are nosey and don't NEED to know ! Depending upon the person, I either tell them that I have a form of MD (which everyone seems to be at least vaguely familiar with) or I go further into explaining mito. It all depends upon how receptive I think they will be. I've also told nosey people that I don't talk about my medical situation with strangers. Sometimes peple ask me if I've injured my knee when they see me walking with a cane and I usually just say " no. " They don't need any more information than that ! bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2005 Report Share Posted March 20, 2005 I just say muscle disease, and I still have people who think the worst. It would be nice if people just understood that I have to be careful what I do, and how much I do, but I'm ok. Kim > > I tell people that I have a form of muscular dystrophy. When asked > how > > I feel, I usually say " hanging in there " , unless it is someone who > > really wants to know. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2005 Report Share Posted March 20, 2005 I just say muscle disease, and I still have people who think the worst. It would be nice if people just understood that I have to be careful what I do, and how much I do, but I'm ok. Kim > > I tell people that I have a form of muscular dystrophy. When asked > how > > I feel, I usually say " hanging in there " , unless it is someone who > > really wants to know. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2005 Report Share Posted March 20, 2005 I do think I'm too open sometimes, and I tend to believe people really care (most don't care, and don't really want to hear it). I've got to learn to keep it short, if at all, and then change the subject even if they persist. People like this guy, make me loose hope in people. Kim > > Let's face it, most people are nosey and don't NEED to know ! > Depending upon the person, I either tell them that I have a form of > MD (which everyone seems to be at least vaguely familiar with) or I > go further into explaining mito. It all depends upon how receptive > I think they will be. I've also told nosey people that I don't talk > about my medical situation with strangers. Sometimes peple ask me > if I've injured my knee when they see me walking with a cane and I > usually just say " no. " They don't need any more information than > that ! > > bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2005 Report Share Posted March 20, 2005 I do think I'm too open sometimes, and I tend to believe people really care (most don't care, and don't really want to hear it). I've got to learn to keep it short, if at all, and then change the subject even if they persist. People like this guy, make me loose hope in people. Kim > > Let's face it, most people are nosey and don't NEED to know ! > Depending upon the person, I either tell them that I have a form of > MD (which everyone seems to be at least vaguely familiar with) or I > go further into explaining mito. It all depends upon how receptive > I think they will be. I've also told nosey people that I don't talk > about my medical situation with strangers. Sometimes peple ask me > if I've injured my knee when they see me walking with a cane and I > usually just say " no. " They don't need any more information than > that ! > > bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2005 Report Share Posted March 21, 2005 For the casual encounter, I'm still struggling for a satisfactory way to explain my mito. Like all of us, I have good days and bad days. But even my good days are not really very good, like what most people take for granted. A better term would be a good PORTION of a day, like maybe a four-hour chunk at most. And, as people have observed here, I pay later if I overdo it. I'm very fortunate in that, presently, my very serious crashes are quite rare, now that I've learned to be careful. So, all of this makes for a general presentation that only a few really good listeners can ever appreciate. I talk about NO energy and I see people looking at me like, then why are you STANDING there saying that? The printed (free) 20-page brochure on Mito Myopathy from the MDA has been wonderfully useful for me, with doctors and lawyers. This does a fair, albeit lengthy, job of explaining the disease category, and there's even a section on encephalomyopathy. I highlight the symptoms that especially apply to me. Something about seeing it in print, makes the whole mysterious thing somehow BELIEVABLE. I just SO wish there was a version that wasn't so focused on CHILDREN, in nearly all of the photos. Just to help skeptics understand that this is an adult problem too. Steve > Date: Sun, 20 Mar 2005 21:10:00 -0000 > > Subject: Re: explaining to people > > > Mitochondrial Myopathy is listed under the umbrella of the Muscular > Dystrophy Association. There are 40 Diseases noted. The MDA deals > with the neuromuscular part of the disease and you can receive > services from the MDA if you see one of their doctors. This does > not mean that the doctor you see is going to be well versed on the > disease. Even within the MDA - There are only a few who can be > considered knowledgeable about Mito. > > If you have a diagnosis of Mito - you do qualify for their services > though. Go to http://www.mdausa.org and you can find information > there. > > Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2005 Report Share Posted March 21, 2005 For the casual encounter, I'm still struggling for a satisfactory way to explain my mito. Like all of us, I have good days and bad days. But even my good days are not really very good, like what most people take for granted. A better term would be a good PORTION of a day, like maybe a four-hour chunk at most. And, as people have observed here, I pay later if I overdo it. I'm very fortunate in that, presently, my very serious crashes are quite rare, now that I've learned to be careful. So, all of this makes for a general presentation that only a few really good listeners can ever appreciate. I talk about NO energy and I see people looking at me like, then why are you STANDING there saying that? The printed (free) 20-page brochure on Mito Myopathy from the MDA has been wonderfully useful for me, with doctors and lawyers. This does a fair, albeit lengthy, job of explaining the disease category, and there's even a section on encephalomyopathy. I highlight the symptoms that especially apply to me. Something about seeing it in print, makes the whole mysterious thing somehow BELIEVABLE. I just SO wish there was a version that wasn't so focused on CHILDREN, in nearly all of the photos. Just to help skeptics understand that this is an adult problem too. Steve > Date: Sun, 20 Mar 2005 21:10:00 -0000 > > Subject: Re: explaining to people > > > Mitochondrial Myopathy is listed under the umbrella of the Muscular > Dystrophy Association. There are 40 Diseases noted. The MDA deals > with the neuromuscular part of the disease and you can receive > services from the MDA if you see one of their doctors. This does > not mean that the doctor you see is going to be well versed on the > disease. Even within the MDA - There are only a few who can be > considered knowledgeable about Mito. > > If you have a diagnosis of Mito - you do qualify for their services > though. Go to http://www.mdausa.org and you can find information > there. > > Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2005 Report Share Posted March 21, 2005 Steve There is the article on adults with mito. I think it is still on the UMDF web site and may be on the web site. If not, I know it is in the UMDF booklet - Think Mito. It is also shorter. laurie > > For the casual encounter, I'm still struggling for a satisfactory way to > explain my mito. Like all of us, I have good days and bad days. But even my > good days are not really very good, like what most people take for granted. > A better term would be a good PORTION of a day, like maybe a four-hour > chunk > at most. And, as people have observed here, I pay later if I overdo it. I'm > very fortunate in that, presently, my very serious crashes are quite rare, > now that I've learned to be careful. So, all of this makes for a general > presentation that only a few really good listeners can ever appreciate. I > talk about NO energy and I see people looking at me like, then why are you > STANDING there saying that? > > The printed (free) 20-page brochure on Mito Myopathy from the MDA has been > wonderfully useful for me, with doctors and lawyers. This does a fair, > albeit lengthy, job of explaining the disease category, and there's even a > section on encephalomyopathy. I highlight the symptoms that especially > apply > to me. Something about seeing it in print, makes the whole mysterious thing > somehow BELIEVABLE. > > I just SO wish there was a version that wasn't so focused on CHILDREN, in > nearly all of the photos. Just to help skeptics understand that this is an > adult problem too. > > Steve > > > Date: Sun, 20 Mar 2005 21:10:00 -0000 > > > > Subject: Re: explaining to people > > > > > > Mitochondrial Myopathy is listed under the umbrella of the Muscular > > Dystrophy Association. There are 40 Diseases noted. The MDA deals > > with the neuromuscular part of the disease and you can receive > > services from the MDA if you see one of their doctors. This does > > not mean that the doctor you see is going to be well versed on the > > disease. Even within the MDA - There are only a few who can be > > considered knowledgeable about Mito. > > > > If you have a diagnosis of Mito - you do qualify for their services > > though. Go to http://www.mdausa.org and you can find information > > there. > > > > Alice > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail > is entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with > their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2005 Report Share Posted March 21, 2005 Great pointer, Laurie, thanks so much, namely http://umdf.org/library/cohen701.pdf. I found that site long ago when I was getting up to speed mito-wise, but it is only now that I am seeing the value of BELIEVABLE literature to hand out to doctors and such. This article is a 16-page PDF " reprint " from the Cleveland Clinic Journal of Medicine, July 2001, and looks very official from my color printer. Steve D. Date: Mon, 21 Mar 2005 08:32:39 -0500 Subject: Re: Re: explaining to people Steve There is the article on adults with mito. I think it is still on the UMDF web site and may be on the web site. If not, I know it is in the UMDF booklet - Think Mito. It is also shorter. laurie > > For the casual encounter, I'm still struggling for a satisfactory way to > explain my mito. Like all of us, I have good days and bad days. But even my > good days are not really very good, like what most people take for granted. > A better term would be a good PORTION of a day, like maybe a four-hour > chunk > at most. And, as people have observed here, I pay later if I overdo it. I'm > very fortunate in that, presently, my very serious crashes are quite rare, > now that I've learned to be careful. So, all of this makes for a general > presentation that only a few really good listeners can ever appreciate. I > talk about NO energy and I see people looking at me like, then why are you > STANDING there saying that? > > The printed (free) 20-page brochure on Mito Myopathy from the MDA has been > wonderfully useful for me, with doctors and lawyers. This does a fair, > albeit lengthy, job of explaining the disease category, and there's even a > section on encephalomyopathy. I highlight the symptoms that especially > apply > to me. Something about seeing it in print, makes the whole mysterious thing > somehow BELIEVABLE. > > I just SO wish there was a version that wasn't so focused on CHILDREN, in > nearly all of the photos. Just to help skeptics understand that this is an > adult problem too. > > Steve > > > Date: Sun, 20 Mar 2005 21:10:00 -0000 > > > > Subject: Re: explaining to people > > > > > > Mitochondrial Myopathy is listed under the umbrella of the Muscular > > Dystrophy Association. There are 40 Diseases noted. The MDA deals > > with the neuromuscular part of the disease and you can receive > > services from the MDA if you see one of their doctors. This does > > not mean that the doctor you see is going to be well versed on the > > disease. Even within the MDA - There are only a few who can be > > considered knowledgeable about Mito. > > > > If you have a diagnosis of Mito - you do qualify for their services > > though. Go to http://www.mdausa.org and you can find information > > there. > > > > Alice Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.