Helping a friend with Muscular Dystrophy

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    Aug 17, 2012 8:55 PM GMT
    Hey guys, I have a serious question that I thought maybe a few of you could help me out with. I have this friend who has duchenne muscular dystrophy. Lately he's been pretty depressed about having such a hard time making friends and talking with girls. He told me that I'm one of the few people who talk to him and that really crushed me. I want to help him out, but I'm not sure what would be best. How can I better help him meet people?

    On a side note, It would also be helpful if you guys could suggest activities that me and my friend could do. We normally just have bonfires or watch movies. I would ask him myself, but I don't want to offend him or make him feel bad if I suggest something that he couldn't do. His mobility is limited so there are certain things we aren't able to do.

    Thanks guys
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    Aug 17, 2012 9:03 PM GMT
    The Muscular Dystrophy Association has an online site, with links to support groups, and other guidance for patients, caregivers & friends. The VA put me in touch with MDA when they gave me a provisional diagnosis of ALS (Lou Gehrig's Disease). I never developed ALS myself as they predicted, or else I have an extremely slow form of it, so I never used the MDA. But perhaps worth exploring for your friend.

    http://www.mda.org
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    Aug 18, 2012 2:00 AM GMT
    This is a tough one, for sure. We have a friend of the family that I've known since I was a teenager who has MD. Mike's now in his 70s and confined to a wheelchair. His MD has always been very advanced; it's almost impossible to understand what he says, but the more time you spend with him, the easier it is to communicate.

    If your friend is able to communicate clearly enough with you that he can voice these concerns of his, then he's probably in a better state than Mike. The main thing I try to remember with Mike is he is just like the rest of us, except he doesn't have the full use of his motor skills. But he gets frustrated and he likes company, just like you and me. Mike seems to like it best when he is involved with other people. He's got a job that is part of a state agency (he makes keys) and he gets paid a small amount but he seems to love it. I think he just wants to be useful and valued. As we all do.

    I'd say that if your friend can communicate with you (and it sounds like he can), just ask him what he'd like to do. Maybe the two of you can volunteer for something in the community you both feel strongly about... getting involved in something is a great way to meet people. And be honest with him. Tell him that you'd like to suggest things but are feeling uncertain of the suggestions and why. Any friendship should be based on honesty, I think, and why not your relationship with your pal who happens to have MD?

    Good luck. I admire your concern and your care for your pal. He's got a good friend in you.
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    Aug 18, 2012 4:25 AM GMT
    BRIX said... The main thing I try to remember with Mike is he is just like the rest of us, except he doesn't have the full use of his motor skill.


    Very nice post, particularly your point that this disease damages muscles, not brain function, as prejudices can kick in when observing someone who doesn't have full control over their body to think it a mental problem.

    At one of the newspapers where I worked early on in that career, one of our editorial writers, very smart, had muscular dystrophy and I'd sometimes talk about it openly with her. She knew that one day in her future she wouldn't be able to continue working but her mind was quite intact and as long as she was mobile, she'd keep working.

    When I was a little kid I used to play on the wheelchair of a woman in town, paralyzed from the waist down. She was a javelin thrower. One of my happiest days was when she showed up at the park with her first electric chair. I sat on her lap and she let me drive the thing.

    At the time I didn't think anything of it. In hindsight, I'm pretty sure she appreciated being treated as a normal person who simply brought her toy chair to share with others who wanted to play.

    So, OP, just as Brix said, just talk to your friend normally. You're a good man for being a good friend. Oh, and it wouldn't hurt if you took him out and got him laid (safely). Now that's a good friend!
  • O5vx

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    Aug 18, 2012 4:44 AM GMT
    Being a student of Special Education, I have learn a lot about people with MD. Depending on the severity of the case of your friend, he could try out some of this activities. Cardiovascular activities usually helps those people who surfer from a decline in their diaphragm. This helps them clear some of the gulps that build up in their lungs and helps them breath better.

    Depending on what this individual is capable of doing, walking, swimming, and biking are all good excise to help them with muscle strength. This should be done in an indoor setting to reduce the risk of having the individual falling. It is important that this person meets with an healthcare provider like occupational therapy to ensure that this individuals are not over working their weakest muscles. They need to set goals and they should try and work towards those goals.

    Regarding social inclusion, you can take him bowling and there he can interact with other people there and learn some social skills. Interaction and community inclusiveness is very important for people with disability.
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    Aug 18, 2012 5:12 AM GMT
    Hitm4up saidOn a side note, It would also be helpful if you guys could suggest activities that me and my friend could do. We normally just have bonfires or watch movies. I would ask him myself, but I don't want to offend him or make him feel bad if I suggest something that he couldn't do. His mobility is limited so there are certain things we aren't able to do.

    Thanks guys

    I thought about this some more, and while the activities I'd list reflect my older age, maybe some would work for him & you, or suggest to you some others. And what's his level of mobility? Wheelchair, crutches, or what?

    - Go shopping and mall cruising, if he's not shy being seen in crowds. Some people with mobility & communication issues are reluctant to tackle a mall on their own, so it becomes a treat when a companion or a small group makes a trip there feasible.
    - Movies you mentioned, especially in theatres with handicap seating areas, or just at home, maybe with others of your friends, too.
    - House parties & dinners with your friends could be ideal, provided access is easy, avoiding stairs without elevators and so forth as he may need. But it also means if he's depending upon you that you can not get wasted there.
    - Go out for pizza, or have a home pizza party with friends.
    - Help him to host his own gatherings, if his place will allow it.
    - Does he drive? He may not get to make many pleasure drives just to see the countryside, or maybe to some attraction, with you at the wheel, perhaps a friend or 2 along.
    - I agree with BRIX about being open and almost nonchalant with discussing his special needs. He will have them, in some ways we all do, and so accommodations should not be a taboo subject.
    - Avoid suggesting places that might make him more mindful of his limitations, like clubs with dancing, or sports games, unless he expresses an interest of his own.
    - Never give the impression that he's holding you back, a burden, or forcing you into activities just for his benefit alone. Try to choose things that you would have done anyway without him, and make his pace your own natural pace. Never do hurry-up-and-wait with him.
  • O5vx

    Posts: 3154

    Aug 18, 2012 5:26 AM GMT
    Art_Deco said
    Hitm4up saidOn a side note, It would also be helpful if you guys could suggest activities that me and my friend could do. We normally just have bonfires or watch movies. I would ask him myself, but I don't want to offend him or make him feel bad if I suggest something that he couldn't do. His mobility is limited so there are certain things we aren't able to do.

    Thanks guys

    I thought about this some more, and while the activities I'd list reflect my older age, maybe some would work for him & you, or suggest to you some others. And what's his level of mobility? Wheelchair, crutches, or what?

    - Go shopping and mall cruising, if he's not shy being seen in crowds. Some people with mobility & communication issues are reluctant to tackle a mall on their own, so it becomes a treat when a companion or a small group makes a trip there feasible.
    - Movies you mentioned, especially in theatres with handicap seating areas, or just at home, maybe with others of your friends, too.
    - House parties & dinners with your friends could be ideal, provided access is easy, avoiding stairs without elevators and so forth as he may need. But it also means if he's depending upon you that you can not get wasted there.
    - Go out for pizza, or have a home pizza party with friends.
    - Help him to host his own gatherings, if his place will allow it.
    - Does he drive? He may not get to make many pleasure drives just to see the countryside, or maybe to some attraction, with you at the wheel, perhaps a friend or 2 along.
    - I agree with BRIX about being open and almost nonchalant with discussing his special needs. He will have them, in some ways we all do, and so accommodations should not be a taboo subject.
    - Avoid suggesting places that might make him more mindful of his limitations, like clubs with dancing, or sports games, unless he expresses an interest of his own.
    - Never give the impression that he's holding you back, a burden, or forcing you into activities just for his benefit alone. Try to choose things that you would have done anyway without him, and make his pace your own natural pace. Never do hurry-up-and-wait with him.


    Wow, this are all great ideas. I completely agree with everything said here.
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    Aug 18, 2012 6:41 AM GMT
    O5vx saidWow, this are all great ideas. I completely agree with everything said here.

    Thanks, but then I agree with your own suggestions, especially:

    "...swimming, and biking are all good excise to help them with muscle strength. This should be done in an indoor setting to reduce the risk of having the individual falling.

    ...bowling and there he can interact with other people there and learn some social skills. Interaction and community inclusiveness is very important for people with disability."


    An adult trike might help with balance and strength issues, if the locale lends itself to biking, and some have electric assist. I actually took some special needs elementary students on bowling trips, and playing against each other they were OK. I'm not sure if this guy would feel outclassed playing with the non-disabled, but certainly a possible activity depending on his abilities.

    Another game is pool, provided the management doesn't feel their tables are at risk from damage, his cue control steady enough. The last thing you'd want to happen is for some insensitive manager to rudely forbid him from playing any of these games, humiliating him in public, so a little discreet groundwork first might be prudent.

    There are other games found in bars, from classic darts to video games, some of which may require aiming skills and dexterity beyond his range. But some games exercise the mind only, the trivia ones being very common in US bars now.

    Home games are endless, and a night of classic cards or board games is something my friends still like to do occasionally. Scrabble (some versions are now electronically assisted to make tile handling easier), Monopoly, I've been to friend's houses to play all the oldies, and even chess & checkers. And one gay guy was crazy for Mahjong, so first he'd have us over for cocktails, a light dinner, then 8 or so would play for a couple of hours at several tables.

    But always a group of us, in this case perhaps especially important as you say to achieve social interaction and community inclusiveness. Someone with a serious medical condition constantly faces discrimination & isolation, and if he can't get out to the crowds easily himself, the crowds must come to him, or else they bring him along with them.
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    Aug 18, 2012 4:35 PM GMT
    Thanks a lot all of you! there were some really good suggestions I'm going to have to use. He uses a motorized chair and doesn't have much mobility in his limbs- his greatest mobility is in his fingers. I'm going to ask him and see if he would be up for these sometime. Thanks again icon_smile.gif