Muscular Dystrophy.....looking for hope.

Subject: Muscular Dystrophy.....looking for hope.
From: Pseudolus
Date: 15 May 01 - 01:43 PM

I've participated in many threads like this one but I've never been on this side of the fence. My nephew has just been diagnosed with Muscular Dystrophy. He is 5 and has always been a "little behind" but no one expected this particular diagnosis. In fact, he has been to physical therapy and has been progressing. However, the doctor is sure and with more tests they will determine which dystropy and determine the options. I'm feeling incredibly sad for both Mikey and my sister who can't have a conversation about him without crying...neither can I. We're all looking for a silver lining but none of us seem to be able to find one.....anybody?

Frank

Subject: RE: Muscular Dystrophy.....looking for hope.
From: mousethief
Date: 15 May 01 - 01:55 PM

I'm so sorry, Frank. I don't know of any silver linings with this particular diagnosis. Definitely, when you are able, get in contact with any MD-specific support groups you can find; they will know where the hope lies, and help you all deal with this terrible disease as best as you may.

Again, my sincere condolences, and my thoughts and prayers go with your brave little nephew.

Alex

Subject: RE: Muscular Dystrophy.....looking for hope.
From: GUEST,Karen
Date: 15 May 01 - 01:55 PM

I'm sorry. What a horrible thing to have happen.
There is a lady at my work whose daughter was diagnosed with MD soon after her birth. She is sixteen now and needs to be in a wheelchair all the time but her life is not sad! At last year's company picnic she joined in all the field games with everyone else. She has a great outlook on life and doesn't sit on the sidelines.
It's going to take some time for all the family members to come to grips with this new situation but I hope for everyone's sake you all can try for normalcy.
I have another friend who was born with only one arm. His parents never made him feel he was handicapped and that's the outlook he has on life.

Subject: RE: Muscular Dystrophy.....looking for hope.
From: Clinton Hammond
Date: 15 May 01 - 02:08 PM

The gods never task us with more than we can handle is about the only 'silver lining' that I can think of...

Stiff upper eh, frank...

Subject: RE: Muscular Dystrophy.....looking for hope.
From: SINSULL
Date: 15 May 01 - 02:19 PM

Frank,
The good news is that with love and encouragement and acceptance, your nephew can, like any other child, grow to be the best person he can possibly be. He is exactly the same little boy you all loved and adored before the diagnosis. There are a number of us here with "special" children. I believe every one would tell you that it's OK to be angry, throw things, etc. It isn't fair. It isn't right but it IS. Cry with your sister and her husband. And then do what you can to challenge and teach your nephew.

Subject: RE: Muscular Dystrophy.....looking for hope.
From: wysiwyg
Date: 15 May 01 - 02:24 PM

Frank, I would be very pleased to send this out to the prayer chain if you would like to e-mail me with more detail.

And me, I'm already praying, for all of it.

~Susan

Subject: RE: Muscular Dystrophy.....looking for hope.
From: catspaw49
Date: 15 May 01 - 02:26 PM

What Sinsull said......and everyone else too. Same kid, just needs a few extras here and there. Lots of good things happening with the various MD diseases. my best thoughts accompany others to you Frank.

Spaw

Subject: RE: Muscular Dystrophy.....looking for hope.
From: Morticia
Date: 15 May 01 - 02:46 PM

My very best love to you and your family Frank.I work with disabled people and all I know is, they aren't the ones with a problem, we are.If we can learn to value difference, treat a fellow human being with respect and offer and enable them to have the same choices as the rest of us, we will move a long way forward on the path to making life for your little nephew a much better place.

Subject: RE: Muscular Dystrophy.....looking for hope.
From:
Date: 15 May 01 - 03:56 PM

There is a lot of hope. Here is a web site by Google searching for md and essentail fatty acids. There are dietary changes that could hlep and probably wouldn't hurt, such as eating more fish and avoiding trans fats. I would recommend a good naturopathic doctor or a complementary medicine doctor. Read up on these fats...the body can't function without them. mg

oops..it didn't work..just go to google and type in muscular dystrophy essential fatty acids. on the second page that comes up is an article by Dr. Mary Enig who is well known in fat research....

Subject: RE: Muscular Dystrophy.....looking for hope.
From: Jacob B
Date: 15 May 01 - 04:32 PM

There's nothing as scary as getting a diagnosis. Try to remember that the diagnosis is not the kid. Your nephew is still the same boy he was before, with certain weaknesses, and other strengths. We've all got both strengths and weaknesses, so he's no different from anyone else in that regard. This diagnosis means that he won't get stronger at certain of his weaknesses, but he can still find things he enjoys. Look at the diagnosis as a tool for getting him the kinds of help he can benefit from, and try to ignore it otherwise. He can still be a person who enjoys life - and that's all any of us can ask.

Try to give your sister all the support you can. The strain on her is going to be tremendous. Try to locate some local support groups for MD parents.

I hope some of this helps. My heart is with you.

Jacob

Subject: RE: Muscular Dystrophy.....looking for hope.
From: katlaughing
Date: 15 May 01 - 04:46 PM

There is a lot of information out there in the web, as Mary pointed out, as soon as you know the specifics, we can find some good advice and advocacy groups which should be of benefit for you, your sister, and your nephew.

I am sorry to hear of this. Please let us know as soon as you know more and we can look for that info.

All my good thoughts and prayers for the highest good of all concerned are coming your way.

kat

Subject: RE: Muscular Dystrophy.....looking for hope.
From: Hollowfox
Date: 15 May 01 - 06:13 PM

My thoughts and prayers go to him and his family (that includes you!). Like those other posters said, there's support out there for you, and information, and advice for the finding. There's been a lot of research, so there is hope, more than if he'd been born a few decades ago. As for diagnosis, remember all those folktales where naming the demon was part of winning the battle.

Subject: RE: Muscular Dystrophy.....looking for hope.
From: Pseudolus
Date: 16 May 01 - 08:42 AM

Thank you all for your thoughts and prayers. After the visit with the doctor last night it seems that the two most likely dystrophies that Mikey might have are among the worst kind. apparently, not all dystrophies attack the heart and respiratory system but both of these do, eventually.

But, we have all gotten a sudden spurt of confidence, partly because of the kind words like we've received here, and partly because we're feeling strength in numbers. I am one of six kids, and between us all we have 15 kids so far. Not a bad built-in support group!

Stides are being made in research every day and Mikey is still so young. We feel like we're in a race, but we fell it is a race we can win!!

Thanks again for all the kind thoughts. This truly is a special place.....

Frank

Subject: RE: Muscular Dystrophy.....looking for hope.
From: Steve Parkes
Date: 16 May 01 - 09:35 AM

We have a friend with a very special child, Heather. If there's one thin she's taught us, it's the importance of loving family and friends; all the technical skills you need you'll learn as you go, but the love will be there from the start, as much as you need.

Steve

Subject: RE: Muscular Dystrophy.....looking for hope.
From: celticblues5
Date: 16 May 01 - 12:53 PM

Frank -

As you've found out, there are many different disorders under the broad label of "muscular dystrophy." Some are sex-linked and some are autosomal; some are anticipatory - that is, they show up at earlier ages in succeeding generations; then, within individuals, there are differences - certain forms of MD can be mild. Once a specific diagnosis is definite, your family should get genetic counseling.

I'm sorry to hear they think your nephew has one of the more severe forms - one hopeful thing is that a lot of the research going on seems to be focused on the more severe forms. Contact your local Muscular Dystrophy Association group and ask for a subscription to "Quest" - it will keep you up to date on research and support. They even have a column for pen-pals, and those with the same forms of MD can link up to support each other and share how they are getting on with their lives. There are also ads for supportive devices, and information on funding and applicable legislation going on.

Best of luck to your family in a difficult situation.

Subject: RE: Muscular Dystrophy.....looking for hope.
From: celticblues5
Date: 16 May 01 - 01:46 PM

I forgot to include the website for the MDA -

www.mdausa.org

Quest is free for those in the MDA program

Subject: RE: Muscular Dystrophy.....looking for hope.
From: GUEST,matt shortridge
Date: 17 May 01 - 10:21 AM

Hey Frank,
My 40 year old brother has been living with Duchenes all his life. He has struggled physically and emotionally with it, of course. His condition has been a big pain in his back-end. He'd be the first to tell you that. But to look at this guy, and he would roll his eyes and make a sarcastic remark if he knew I was writing one of those "Isn't he amazing how he copes with his terrible misfortune" letters, he really is an amazing man in his accomplishments. He is a social worker in an ER in a hospital and does Psyc evaluations on the weekend graveyard shift. He's also a great musician and an amazing photographer. He recently turned the kitchen in his apartment into a darkroom. He says he eats carry-out most of the time anyway. He photographs homless folks and eccentric characters with great respect and compassion on the streets of DC. He brings the prints he has made back to the folks and shows them to them, or gives them to them. He brought a print of a Mexican homeless guy back to him and the man was brought to tears. The guy, with my brother's help, sent the prints down to the guy's family in the town he's from. He has a million stories like this one.
Anyway, I feel for your nephew having watched my brother grow up and slowly come to grips with his predicament, but your nephew does have a life ahead of him that will be full of love and challenges and heartbreak and success, just like the rest of us. I think he'll suprise you.
-matt

Subject: RE: Muscular Dystrophy.....looking for hope.
From: wysiwyg
Date: 17 May 01 - 11:03 AM

Per our discussion, Frank, this is going out to the prayer chain now.

~Susan