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Old 11-09-2010, 08:58 AM   #1
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Join Date: Nov 2010
Location: Washington, DC USA
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clrcrw HB User
Questions: Husband and Daughter with MD

Hi,

I'm new here. My husband's MD is not named, since it's a conglomeration of several. Apparently, there's no record of anyone having the same exact group of issues. He was diagnosed as a child. Lately, he's been in denial with his MD. He says he's going downhill fast, but almost refuses to manage the things he can control - sort of like self-sabotage. Since I've known him (4 years now) he's gained 60 lbs and is in worse shape than ever, for obvious reasons. He's in constant fear of falling and cannot get out of low chairs. A friend had to lift him out of his seat at the movies this weekend. That was a truly low point for him.

Our daughter is two and has MD as well (though we were told she wouldn't get it during all the genetic meetings prior to getting pregnant). She apparently presents much like he did, though he says she's worse than he was. Until now, I've followed my husband's lead in dealing with her MD. "Nobody has ever been able to help" him, so as he is a physician, he's told me what to expect, but we haven't been to a neurologist. I have a few questions about dealing with both of them, as I need to take some action here and stop letting time pass.

1. He needs to lose weight. A lot of it. He has no willpower and tends to eat large portions, binge (when he thinks I'm not looking) and drinks. Have you found a nutritionist to help you in maintaining a functional weight? Do you stick to a protein diet? What would be helpful from your significant other?

2. Have any of you in the DC area found any experts you'd recommend? He needs to get back in to see someone after a long time. I'm sure there are new ideas out there that might be helpful.

3. Can you recommend how I should go about advocating for my daughter when he is obviously too close to the issue? I need to overstep him on this one and take care of finding out more about HER MD. I know it will lead to strife in our household, but I'm willing to endure that to help her. What would be things that YOU could hear and not feel trampled?

4. Have any of you in the DC area seen any pediatric specialists you'd recommend? We need to get on board fast.

Thanks so much for your time.

 
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Old 11-12-2010, 10:23 AM   #2
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Location: Florida
Posts: 203
NP74 HB UserNP74 HB UserNP74 HB User
Re: Questions: Husband and Daughter with MD

Hey there,

I am not sure I can be of much actual help to you, but I hope I may be able to help you gain at least a little insight into your husband's brain. First of all, MD affects the entire family, but it is also a very lonely disease, we are the ones that can feel the subtle differences, and the fear I experience every time something happens is paralyzing! It is imperative to NEVER belittle your husband's fears that he is getting worse, he may not be, but if you doubt him and don't see the differences he is speaking about. Be supportive, maybe encourage a Dr's visit, or wait for the episode to pass. Sometimes it passes, but sometimes we really are getting worse. As you mentioned having a friend help him up at the movies was a first, but also a last. He will no longer be able to go to the movies alone!

Yes, weight management is definitely important, but also very hard. You would think that a diet consisting mostly of protein would be what is needed, but additional protein really does not do anything for us. What is important is to eat a well balanced diet like everyone else and we also need to exercise like everyone else. If he tells you differently he is not telling the truth!

I do agree with you that you need to get your daughter to a neurologist so you can get put in contact with PTs, OTs, and whatever else she needs. You need to do this for her, regardless of the friction it will cause!

I think your husband is going through a depression right now, I have been there, and I am still fighting my way out of it. I have been tere for years, I have seen a therapist for two and a half years, and been on misc antidepressants and mood stabilizers as well. Right now I am pretty sure I would make all the alarm bells go off if someone requested a drug test on me ;-) Just today, my therapist looked at me and told me that I looked amazing, and that he hoped I would see my regular family Dr soon as he was the one who referred me two and a half years ago.

Binge eating is a type of eating disorder, and it is also often a symptom of depression. One of my depression symptoms was also that of an eating disorder. I think your husband eats to comfort himself, I didn't eat as a way to punish myself. Any time something goes wrong for me I immediately stop eating!

Would he be willing to go see a counselor with you? If you can find a good one, it can make all the difference in the world.

As I said I am probably not of much help to you, but I hope I could give you a little peak inside his head.

Check out possible support groups in your area!

P

 
Old 11-12-2010, 10:43 AM   #3
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Re: Questions: Husband and Daughter with MD

Hi clrcrw,

I'm glad you found this board. I must agree with everything NP74 said. "NP" and I go way back and have long supported each other emotionally on this board. There are others that come hear often as well......all similar to your husband.

I am in very much the same position as your husband. Except ,I am worse. I have been through his phase, probably about 3 years ago. I cannot get up at all out of a chair or off the floor. I am terrified of falling. Long ago I threw vanity out the window and concentrated on making my life better. I now use a scooter and a lift recliner at home. I bought an UpEasy lift cushion to take with me to other peoples homes, restaurants, etc. This is way better than hiding at home. I go out with my wife and daughters all the time...movies, the beach, dinner. All on my scooter and I LOVE it!

Fortunately I've not plunged into depression...but I do have to push it aside every day. Also the weight gain is a huge issue. MD patients cannot exercise nor do aerobic type exercise to lose weight. The weight only GREATLY ads to the immobility problems. I've gained 20 pounds in the 9 years since I was diagnosed but I try hard to let it get no worse.

I know your husband feels alone. I sometimes do. This is natural but I make sure I don't shut anyone out.

Surely you have clinics and MD doctors in DC. I actually traveled from Michigan to DC to visit NIH where I had a great deal of genetic and other tests done. They put me in a database there where they could compare me with other cases. I to am undiagnosed with a specific MD. All we know is that it is some type of Limb-Girdle.

Post back here with any questions and I or others will gladly try to give answers. We are living this and want to help anyone else who is plus future generations.

Best of luck to your family,

Mark

 
Old 11-21-2010, 07:22 AM   #4
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Join Date: Mar 2009
Location: Silver Spring, MD
Posts: 66
Monnie45 HB User
Re: Questions: Husband and Daughter with MD

Hi, I have myotonic dystrophy 2 and I live in Silver Spring. I have been seeing a rhumatologist but wonder how much he really knows about the disease. I was sent to another rhumatologist though for a diagnosis several years ago and he did in fact diagnose me. He is unfortunately not as convenient as the rhumatologist I have been seeing in Wheaton. His name is Dr. Katz, think it is James. He is at GW university, GWdocs.

Marlene

 
Old 11-21-2010, 07:24 AM   #5
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Join Date: Mar 2009
Location: Silver Spring, MD
Posts: 66
Monnie45 HB User
Re: Questions: Husband and Daughter with MD

Hi, I have myotonic dystrophy 2 and I live in Silver Spring. I have been seeing a rhumatologist but wonder how much he really knows about the disease. I was sent to another rhumatologist though for a diagnosis several years ago and he did in fact diagnose me. He is unfortunately not as convenient as the rhumatologist I have been seeing in Wheaton. His name is Dr. Katz, think it is James. He is at GW university, GWdocs.

Marlene

 
Old 06-06-2011, 05:40 PM   #6
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Smile Re: Questions: Husband and Daughter with MD

Quote:
Originally Posted by clrcrw View Post
Hi,

I'm new here. My husband's MD is not named, since it's a conglomeration of several. Apparently, there's no record of anyone having the same exact group of issues. He was diagnosed as a child. Lately, he's been in denial with his MD. He says he's going downhill fast, but almost refuses to manage the things he can control - sort of like self-sabotage. Since I've known him (4 years now) he's gained 60 lbs and is in worse shape than ever, for obvious reasons. He's in constant fear of falling and cannot get out of low chairs. A friend had to lift him out of his seat at the movies this weekend. That was a truly low point for him.

Our daughter is two and has MD as well (though we were told she wouldn't get it during all the genetic meetings prior to getting pregnant). She apparently presents much like he did, though he says she's worse than he was. Until now, I've followed my husband's lead in dealing with her MD. "Nobody has ever been able to help" him, so as he is a physician, he's told me what to expect, but we haven't been to a neurologist. I have a few questions about dealing with both of them, as I need to take some action here and stop letting time pass.

1. He needs to lose weight. A lot of it. He has no willpower and tends to eat large portions, binge (when he thinks I'm not looking) and drinks. Have you found a nutritionist to help you in maintaining a functional weight? Do you stick to a protein diet? What would be helpful from your significant other?

2. Have any of you in the DC area found any experts you'd recommend? He needs to get back in to see someone after a long time. I'm sure there are new ideas out there that might be helpful.

3. Can you recommend how I should go about advocating for my daughter when he is obviously too close to the issue? I need to overstep him on this one and take care of finding out more about HER MD. I know it will lead to strife in our household, but I'm willing to endure that to help her. What would be things that YOU could hear and not feel trampled?

4. Have any of you in the DC area seen any pediatric specialists you'd recommend? We need to get on board fast.

Thanks so much for your time.
Hi
I too am new to this site (about a month) but I have already had more questions answered by supporting people. Than DRs.
I am female,59 and have had MD all my life. Fortunately I was in my forties before it became a big issue.
I'm only here to say your husbands life is very similar to mine. So if I can be of help to you for support for you or him don't hesitate to ask.
Oh ya my 36 yr old daughter also has it. Hang in there Dreaman

 
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