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Mozo 06-03-2010 05:39 PM

Coping with MD?
 
Hi,

(I posted something similar on the general "disability" board before finding this one. I think the answers here might be more relevant.)

I'm a 31 year old man living in Australia... who just also happens to have muscular dystrophy. I can't tell you what type because nobody seems to know. I've had muscle weakness since birth and could never walk, but by age 25 I was ventilated at night with a tracheostomy, and could not support myself fully even when just sitting--20 years earlier, I could use crutches, was playing the piano, drawing, etc., but that all slowly slipped away between 1986 and 2003. By 2003, I was chair-bound and even unable to write.

Then I suffered a brain hemorrhage at age 25, which left me bedridden for four years. I am now on a ventilator 24/7, but have a power wheelchair. Despite all this, I have gotten a degree in Computer Science and am now progressing towards a PhD.

Anyway, I'd really like some insight into how other people feel about living with disability and degenerative conditions such as muscular dystrophy in particular.

So let ne ask: [B]What is your biggest fear or frustration?[/B]

[B]What worries you the most?[/B]

I'd really love to hear other people's thoughts on this. It's nice to know you're not alone.

michigani 06-03-2010 06:11 PM

Re: Coping with MD?
 
Mozo,

Welcome to the board. Feel free to visit and post often! Congratulations on your accomplishments. I am very impressed. I am a 49 year old male with MD. I feel very fortunate that I can still walk (barely). After reading your post and your situation I feel I have no right to complain about anything.

To answer your question, my biggest fear and frustration is being a burden to my family. I don't mind so much giving up fun stuff like sports, hiking and the like, but my wish is just to be able to take care of myself without others having to sacrifice.

I've posted to this board hundreds of times. Feel free to read my other posts and you'll get to "know" me a bit.

Hope to hear more from you.

Mark

Mozo 06-03-2010 06:39 PM

Re: Coping with MD?
 
[QUOTE=michigani;4258899]Mozo,

Welcome to the board. Feel free to visit and post often! Congratulations on your accomplishments. I am very impressed. I am a 49 year old male with MD. I feel very fortunate that I can still walk (barely). After reading your post and your situation I feel I have no right to complain about anything.[/QUOTE]

Hi Mark,

Firstly, thanks for the welcome.

Secondly, I don't think you're being fair on yourself by saying you have no right to complain, compared to my situation. I think we each have unique challenges in life, and I respect that while one person's challenges may be different to another's, that doesn't make their impact on that person's life any less significant.

I understand what you mean about having to rely on others. I used to procrastinate when asking for assistance because I hate "bothering" people and imposing, especially when it comes to people I care about.

But I think we often make these things bigger in our own heads than what they actually are. These people care about us just as much as we care about them, and I think it's too easy to "project" our own self-image onto them. In truth, maybe we feel a bit "useless" so we then assume they resent our presence. In reality, it's probably furthest from their minds.

I'd say that a good self-check in this case is to be aware of how much your family cares about you. And even if it's unsaid, actions really do speak louder than words.

That's my take, anyway.

mandy37 06-03-2010 11:49 PM

Re: Coping with MD?
 
Hi there

I agree with Mark that we should feel "fortunate" not to have progressed the speed that you have.

I was diagnosed at the age of 19 and I'm now 37.

I have FHD and Limb Girdle combined (what dr's told me). I am one of those people that lives and lived with denial all my life since having MD

I do know that we all feel "unwanted" and being a "burden" to those around me.

Being a mom of two teenage boys the pressure to be "perfect" lives with me everyday

I do try and have a positive attitude towards MD regardless of the hurdles placed in my way. All the falls and embarrassment I had to live with still encouraged me to work even harder to "prove" that this illness will not get my under

I've posted negative and positive thoughts on this site and responses I receive from friends on this site opened my eyes to what I actually have and start accepting the way I am

I'm not going to "complain" about my MD and from now I am going to accept what I have and concentrate on the positive in my life.

You have already not giving this daemon an excuse not to improve your life and to study further is something I would not even attempt as I can't even figure out the math solutions my children is challenged with on a daily basis.

Welcome to this site and keep us updated on your progress and dealings with any situation you face every day

Mandy

Mozo 06-04-2010 03:34 AM

Re: Coping with MD?
 
Thanks, Mandy.

I really think you have the right idea with your attitude. Some things in life you can't change: these are bare facts. But once you accept them, you can work within that framework and then continue to live life.

It's like navigating a maze: Sure, it might be tricky, but it's a lot harder doing so in the dark!

I went to a mainstream primary school (years K-6), but in high school (years 7-12) I was mainstreamed in a school with a "support unit". In that unit, so many young disabled people seemed to have given up on life...and frankly, nobody had given them a reason not to.

To return to the maze metaphor, the lights were on, but they'd decided to just sit there and wait for the minataur instead.

In the support unit, I was told that university was not an option and that I should "realise my limitations". (Actually, this was said to my mother in front of me, which is worse in some ways.) My thought was, "What? I'm not expecting to be a model or astronaut!"

All of this really stayed with me, in that I saw what listening to such things does to people: you've lost before you even enter the game! I could never simply go through life waiting to die.

So, like you, I have something to prove. Not to the naysayers I haven't seen for 16 years and probably never will again, but to myself: that there is always hope and promise in life. And I genuinely believe that. Every day offers something, if your eyes are open to it.

mandy37 06-04-2010 07:20 AM

Re: Coping with MD?
 
I like the way you think and yes I agree some people can be real a...holes by the way they perceive a person with physical disabilities and not realizing hey we have brains and more likely ears as well

The being a model part I'm still working on as these days showing off some body parts is not that easy as it used to be (LOL) I do believe we can achieve anything we want although we do become "lazy" at some point and do have the attitude of "what the hell"

Read my Ouch post and you can see how I perceive life at the moment although today I've been grumpy biting the heads of my boys for not realizing I am the mother in the house and they should start listening when my voice is raised

I do get treated as an equal here at home and sometimes (whispering) I want to tell them to see I am disabled and serve me for a change. That is likely to happen and the odds of a hunk knocking on my door has a better chance of becoming a reality

Keep up your good spirits and hey maybe one day that model part of you wishes (or I wish for you) could become a reality....

michigani 06-04-2010 10:23 AM

Re: Coping with MD?
 
Mozo,

You have a good attitude and hopefully if you read some of my posts, you'll see that I'm in the habit of being optimistic as well. Just the other day I was out on my scooter. I went to the grocery store. I do most of the grocery shopping and virtually all of the cooking for my family because it's a passion....I'm an amateur gourmet chef. (At least I hope!) Riding home the 2-1/2 miles from the market on my loaded up scooter I heard birds chirping, saw squirrels running about and felt the warm sun on me all the way home. I thought at that moment "I love being alive. This is what really matters and I don't need legs to enjoy moments like this!" I wanted to take the long way home were it not for my frozen goods.

I've said before it's what is in your head that really matters. Much better to have bad legs and a happy mind then a healthy body and a bleak outlook.

Stick around. There's good people here.

Mark

NP74 06-04-2010 12:46 PM

Re: Coping with MD?
 
Hey Mozo,

I guess it is my time to welcome you to the group! I have LGMD2I, I was diagnosed three years ago, but I know it was there way before that, but denial is a good ship until you hit a hurricane unprepared. I am 35 years old and live in Florida, but I am originally from Denmark.

Growing up I was always the slowest at sports etc but made up for it with a good personality and good academic capabilities. After high school I chose to spend a couple of years checking out the world before going to college. Who would have known that it was the best decision I ever made as it is clearly to late now. I love traveling, and of all the things I can no longer do, exploring nature and the world are the things I miss the most. I want to show my husband the Great Barrier Reef, the Great Wall of China etc.

My fears for the future are to become completely dependent on someone to help me with everything, I know I am lucky compared to you, I can still walk, and when my husband is with me I can actually walk forever, as I feel secure. I fear that my husband will see that he would be better off if he left me. He was very young when we got married, and I feel that I took his youth away from him. He is an awesome uncle to our niece and nephew, and it breaks my heart to know that he will never be a dad if he stays with me. I do not want him to leave me, but I would never blame him if he did, he does not deserve this.

I do occasionally get some pretty severe bouts of depression and anxiety and I have been on a nice cocktail of antidepressants, as well as seen a therapist for the past three years. There are times when I do well, and times when I do not so well as you will see if you take a look at my posts. Right now I am working my way back up after suffering a concussion about a month ago, who knew concussions could make depression flare up ;-)

Have a great weekend.

P

Mozo 06-18-2010 03:57 AM

Re: Coping with MD?
 
Hi guys,

Sorry for my absence. I had exams which distracted me. Anyway, I do plan on sticking around.

I've read quite a few posts since and they've all given me some great insights. There are some great attitudes in here. Very refreshing to see.

< edited >

Anyway, you'll see a lot more of me now.

Cheers,
Dion

qadt0004 07-09-2010 08:03 AM

Re: Coping with MD?
 
Hi ,

I feel your pain.

I am a parent with two of my kids with mascular dystrophy, both are disabled and at present confined to a hospital. One has gone through four corrective surgery.
I heard about ACE-031. Can anyone of you tell me if you tried or heard about it ? How can I get this drug for my kids, time is running out....

R57 04-06-2011 06:18 AM

Re: Coping with MD?
 
Hi everybody,

I'm pretty new here, I have posted some messages but mostly complaining! I do respect you alot and I wish I'll be as strong as you to cope with my illness... I'm 32 years old and recently(in Dec 2010) am diagnosed with distal myopathy(probably Nonaka). I'm waiting for the muscle biopsy appontment on 27 April. I've read alot in internet, sometimes there are hopes and sometimes not... I think I do need time to handle this but what I mostly affraid is to find a partner who accepts me as I am :( ...I have been always a sentimental person love to love and to be loved... But now I'm affraid to be alone :(

Best wishes
Rira

michigani 04-06-2011 11:20 AM

Re: Coping with MD?
 
Hang in there Rira,

Everyone here understands your fears and frustrations. Post here anytime. There are a lot of great people all going through the same thing in various stages of MD. It's very hard and even if we're surrounded by friends or family, it's sometimes easy to feel alone.

Mark

R57 04-07-2011 02:50 AM

Re: Coping with MD?
 
Hi Mark,

First of all thanks alot for your supporting message. I'm glad to meet people like you here.

Today I am in a good mood, I have decided to be more optimistic and less nagging! :) I know I'm not the only person in the world struggling with my illnes and I can have good friends having the same problem... But it was just too fresh and recently there were too much pressure on me in my private life...sometimes I think the world decides to put me in a hard examination to see how tough I am.... hmmmm living in a foreign country thousands miles away from the family is not easy sometimes!

Have a nice day,
Rira

DCM1 04-09-2011 03:39 PM

Re: Coping with MD?
 
[QUOTE=R57;4724974]Hi Mark,

First of all thanks alot for your supporting message. I'm glad to meet people like you here.

Today I am in a good mood, I have decided to be more optimistic and less nagging! :) I know I'm not the only person in the world struggling with my illnes and I can have good friends having the same problem... But it was just too fresh and recently there were too much pressure on me in my private life...sometimes I think the world decides to put me in a hard examination to see how tough I am.... hmmmm living in a foreign country thousands miles away from the family is not easy sometimes!

Have a nice day,
Rira[/QUOTE]

Thats the spirit Rira.

I think test is the word for it.

Hang on in there. You'll have plenty of good days with the bad, hopefully!

Gerry!


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