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Old 03-01-2011, 06:38 PM   #1
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NP74 HB UserNP74 HB UserNP74 HB User
Theoretical Question

Hey guys,

I have a question, that might be stupid, but I am not sure what the answer is, so bear with me. The other day my therapist and I talked about my depressions and how/why I keep fighting, and I said that it is because I hope there will be either a cure or treatment before it is to late for me. He asked me what I meant by to late, and I said that to me to late would be when I would be completely dependent on someone, as I do not think that the level of muscle atrophy experiences at that level would ever be reversible enough to create (nearly) normal muscle function, as it is my impression that once the muscles are gone, they are gone. He said that if they find a way to stop the progression, it is only a question of either passive or active exercise depending on your functional level. I don't think he is right, but I could very well be wrong. I hope I am as I am only hanging on so far because I hope for a treatment before it is to late.

I know it is probably a stupid question that I should know the answer to.

P

 
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Old 03-01-2011, 11:25 PM   #2
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mandy37 HB Usermandy37 HB Usermandy37 HB Usermandy37 HB Usermandy37 HB Usermandy37 HB User
Re: Theoretical Question

Hi

I think he is incorrect and correct

For us or for me the answer would be the fear of dying (being too late) or sometimes when our brain really goes crazy is the fact we would be lying there with just a head and the rest of our bodies limp without function at all

I do not suffer from depression and never have so I don't seek counselling but I think what we say and the answers we are going to get will never happen.

I don't want to give you a speech because I know it is not my place to do so but your
Quote: I am only hanging on so far because I hope for a treatment before it is too late.

The biggest problem with us is the fact that we cannot accept our fate or condition or whatever you want to call it.

I look in the mirror and see the good I have.

Sometimes I look at my body and the words I mutter is "yuk" and move away

I fell over and burned myself badly and I didn't blame my MD for it, I blamed it being a freak accident.

Don't get me wrong I have days that I lose my temper I cry, I shout and a hour later I'm fine again.

I don't think there will be cure anytime soon so hanging on for the hope for there being one is not a solution for me.

Look you can still sit at the PC sharing your thoughts and that is a good thing right?

BTW there is never a "stupid" question just one we don't always want to hear the answer to

Last edited by mandy37; 03-01-2011 at 11:26 PM.

 
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Old 03-02-2011, 04:47 AM   #3
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Re: Theoretical Question

Hey Mandy,

You are a pretty cool lady, you know that right? Yeah the whole depression issue is a whole different beast (and actually goes back way beyond the MD, the MD is just an additional trigger). Every time I fall or have other mishaps I blame it on myself and get very angry.

I get what you are saying about being dead before it is to late, my little brain has just decided that once I am completely wheelchair bound, it will be to late for me as everything will be out of my hands. Does it make sense on an irrational level? A while ago I had actually found peace with the fact that I would leave this world the day that would happen. People may call me a spoiled brat, but I still cannot face that future, and I still firmly believe that my husband would be better off without me. He is only 32 and could still find a new wife with whom he could live a real life, have kids etc. But anyway I will not get off on a tangent here.

Besides it is OK for you to give speeches, as IMHO that is a part of the purpose of these boards.

I agree with you that we will probably never know a cure in our lifetime, I just don't see it happening any time soon, I may be pessimistic but every time I do research on the Internet there is only limited or no new information.

Thanks for your response, I am sticking around at least for a little longer, the weather is simply to nice, and I can still walk, drive, and get myself to the places I need to go. How is your burn?

P

 
Old 03-02-2011, 05:41 AM   #4
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Re: Theoretical Question

Howzit

My burn is getting better - left a scar but hell I have a permanent scar anyhow so this just gives me a bit more personality.

Thanx for letting me know I'm cool - I hope other people see it the same way - lol

I don't remember how old you are - I know you still young and when I was 28 after my divorce I really had fun crooked body and all.

I could still do things much better than what I can now like actually climbing steps so I made the most of what my body had to offer.

Can you still have kids? My boys and family is so used to the way I am nobody sees it anymore - I get made fun of like telling me to run for the phone when it rings etc etc.

Depression is a nasty nasty thing and yes I think it goes WAYYYYY beyond this MD
(I call MD - my deamon)

I know I'm going to be completely wheelchair bound sooner than later but I don't think about these things.

My life revolves around the now. Don't get me wrong my ex constantly reminds me by asking if I'm coping (I know he cares) that sometimes I wish he would just shut up and rather give me more money .. hehe

Not to be pessimistic either but a cure for MD in this century - nope I don't think so. Luckily I will be dead by then so I will not care anyhow

You must please try and be positive for your hubby. He loves you very very very much and you are lucky to have someone that sees YOU.

You are soooo lucky I have to tell you. Wake up one morning grab him and show him how much you love him. I'm sure he will leave for work with a HUGE smile on his face.

From the wonderful me

 
Old 03-02-2011, 08:01 PM   #5
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Re: Theoretical Question

Hi Mandy,

I am rather new here. Though, i have already been diagnosed with Dysferlinopathy/LGMD 2B for more than 1.5 years ago when I was 24.

Fortunately and unfortunately, i studied and worked in a Medical/Biology research environment.

Fortunately...My knowledge and understandings in the genetic n biological side of this condition, I was able to assure my loved ones to a certain extend. By letting them know that there are on going research on my condition. In this field, i would choose to believe the possibilities of cure with the advance technologies. But unfortunately... Also because that i am in this field, i understand the many years required to get the treatment into a clinical settings soon.

I totally agree with NP that we should not be hanging there for a hope but to live to the fullest now. I know and understand that it is not easy because the hope is something that drives us on sometimes. But I always try to keep the expectation and hope low, so in exchange disappointment will low as well.

I may not be the best person to give advice, as I am still "new" and finding my way out to "live better" with my condition. But this is really a great place to let out your frustration, isn't it? =)

Anyway, nice meeting you! Hugs

Cheers,
min

 
Old 03-02-2011, 10:35 PM   #6
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Re: Theoretical Question

It is nice to meet you – welcome
Yes this site makes you share your frustrations with people that know what you talking about.

I don't think much of my MD at the moment. I'm 38 and was diagnosed was I was 19.

During that time till my middle 20's I chose not to think about it although my body changed a lot and I could not do the things I used to do.

I went through the anger, self-hate, sadness etc. etc. After my divorce I have to admit my life went better. I wasn't in a position anymore where I lived with my husband, kids and MD.

I changed my life - lived it and started to enjoy life. (Don't get me wrong I'm not telling anyone to get divorced to live life pulse)

I do get down sometimes as I think back that 10 years ago at the age of 28 I could still dance and now my boys have to help me get up.

I don't mind anymore - I now have an excuse for teenagers not having an excuse to go out : ) They keep me young and going because to them I'm "normal" and I still have to maintain the house, cook and drive them around

Well that's me again sharing.

Have a fab day to you all and try to be positive even if it means that you adamant your hubs or wife spoils you tonite : 0

 
Old 03-03-2011, 01:30 AM   #7
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Re: Theoretical Question

Hi Mandy/NP,

Oh my god.. I just realised that i mixed up the names here. sorry.. was suppose to reply to NP and agreeing with you. Sorry for being such a muddle head.

Anyway, it is really nice that you have a wonderful family! I guess they are our real motivation and drive to move on. =)

Have a pleasant day! =)

Cheers,
min

 
Old 03-03-2011, 01:52 AM   #8
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Re: Theoretical Question

LOL!!! No problem - we all read the threads - but yea I am Mandy..

Enjoy your day further and don't worry we all have some "blank" moments now and then (anyway I do)

M

 
Old 03-03-2011, 09:08 AM   #9
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Re: Theoretical Question

Hi NP,

I don't even know where to start but I'll try to keep it short and try to ease your mind a bit

I believe that being completely bed ridden and almost paralyzed may not be too late. If a treatment can Stop the progression and actually cure the disease, that is, get your body to start producing the right proteins again, then I think you could recover. It may take a year of agonizing physical therapy but I think you could be walking and living a 90% normal life. True, you may never be 100% but i'd like to believe you could get close.

My dad had MD in the 1970's. There's wasn't even a glimmer of hope at finding a cure in his lifetime. I don't believe that a single MD gene had been identified back then. I have a Dysferlinopathy. Dysferlin was not discovered until 1998. HUGE advances are being made. Today, the MD Pompe disease can be treated and actually reversed. Thousands of scientists are working daily to cure us through genetic repair, protein therapy, and other means.

When I was diagnosed in 2002 I told myself that a cure could be 5-10 years away. It's my faith in this idea that keeps me going and keeps the depression away.

Also, I tell myself everyday that 95% of life is reading a good book, watching the sunset, talking with my wife and kids, watching a good movie or sitting by a crackling fire. MD has stole none of these things from me. I enjoy them like I always have, Sure I get scared some days and extremely frustrated. But I NEVER dwell on the future or the past. This more than anything keeps me content.

I know everyone is different but that's how I cope. Hang in there!

Mark

 
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