Going Through a Transition - Muscular Dystrophy Message Board

michigani · 05-14-2008, 12:51 PM

I’ve been kind of quiet here lately mostly because I just didn’t feel like talking. I’m not depressed; I just feel kind of blah. And frustrated would be a good word. I’ve been going through a transition lately. Up until recently, I’ve been pretty independent. I can get around the house, stay home alone, walk indoors, cook, and even do some light cleaning, picking up etc while my wife’s at work. I’ve been able to get in and out of the house while I’m home alone and I can drive places with my hand controls in my mid-size SUV.

Lately though I feel like I’ve hit a wall. I know I haven’t really experienced a crash; I’ve just finally gotten weak to the point where I can no longer do some things. Getting in and out the back door, getting out of ANY chair other than my lift recliner and getting up off the floor is virtually impossible. I could get up with great difficulty a year ago, but now I’m really nervous about falling. I’d have to be lifted. Even getting my socks and pants on in the morning is a pain in the butt because I can’t lift my feet off the ground, even when sitting on the bed.

I find myself wondering “how can I be home alone all day if I get any worse?” And I know that I probably will.

Anyway, all of the depressing stuff aside; I’ve finally decided to get some “wheels”. I want to get out with my family this summer to the ballpark, the amusement parks, restaurants, etc. All of those things are pretty much out of the question if I try to walk. I’m almost looking forward to having a chair or scooter to help me do those things again. To heck with vanity, I want to do things again!

Just venting and sharing my thoughts. So how is everybody else these days?

CJs Mom · 05-14-2008, 01:13 PM

Hey Mark, I was wondering where you were! Sorry to hear you've been down. Maybe this will help you. I have a friend who is 40 and in a wheelchair for a few years. He also got tired of not being able to do the things he used to do, so he got a chair. He said that he wished he had gotten it sooner because it gave him so much more freedom to get out and go and do things he had not done in a few years. He says he's even able to go fishing and hunting again, these are things he really loves to do.

I hope you get to feeling better soon, you are such an inspiration to me and everyone on this board!!

CJ's Mom,
Lori

npwnry · 05-14-2008, 03:50 PM

Mark,

I can tell you that the 6 months before I got my wheelchair were some of the worst of my life. This is because I waited to get it until there was truly no other choice. When you are able to get around again without fear of falling, without feeling weak and exhausted, without having to plan in advance every detail of a trip to minimize distance, it is such a relief. Your mood will improve!

SHANTACLARE61 · 05-15-2008, 12:35 PM

Hey Mark,

I have to admitt that I check the message board most everyday in hopes of reading some of your words of wisdom and encouragement. I am sorry to hear your going through a rough patch right now.

I often think about how much easier things would be if I would use the scooter chair at the grocery store, mall or anyplace that requires alot of walking. But, I don't. My MD is much milder than yours and many others, But we all know how hard it is to "give in' to this disease with each stage of progression. One of mine right now is still others responses when I tell them that I have it.

There is a woman in my parish that has MS and I have watched as she progressed over the years. She now has a scooter and loves it. We were at an outing a couple of months ago with our church group where there was a big hill to walk up. She must have seen my expression as I looked at the hill and knowing of my MD she offered me a ride. With much hesitation I accepted. She whispered in my ear " I know how hard that was for you to do, I'm proud of you."

I guess I am trying to say just that, to you. Keep your chin up, and know that you have been an

to alot of people on this board.

Mary

Madalot · 05-16-2008, 01:33 PM

Hey Mark --

I think most of us here know exactly what you mean. I think all of us have gone through this transition phase a time or two. It's not easy and "blah" is a great way of describing it.

I know how hard it is to accept that you need additional help, but the chair or scooter will be a good thing. I'll be anxious to see you post once you get it and start using it.

Keep the faith and post here whenever you feel the need to vent. We know what you're going through.

Kathy