michigani
02-01-2005, 08:38 PM
Do those of you still walking run into the same terrifying, frustrating situations as me? It's almost impossible for me to walk on sand, grass, snow more than 2" deep (slipperiness aside, that's a whole other story), or to step up a little 4" or 6" curb without a railing. Last week I got to work (I'm still driving okay) and got halfway across the parking lot in 4" of snow and froze. I was terrified I'd fall and lost all confidence to take another step. There I was 150 feet from my building, trapped. I had to swallow my pride and call over a co-worker who gladly lent an arm to hold on to. Luckily this person had heard about my MD so I didn't have to explain. It seems so unbelievably stupid yet it's very scary. Can anybody relate? :confused:
Mark
Mark
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dkbladez
02-02-2005, 09:00 PM
Hi Mark,
I know exactly how you feel. We had about 2" of snow and I didn't even try go outside in it. I have most of my anxiety on step. It's like my brain tells me I can do it but my legs just don't work. It's very scary. Well I have an appointment for the muscle specialist in April, I guess he will do the muscle biopsy. I haven't been formally diagnosed but this has got to be what I have. Are you on any medication? Will doing exercise like walking or yoga help or slow down the progression? You just don't know how thrilled I feel to have someone who understands how I feel :bouncing:
Shellette
I know exactly how you feel. We had about 2" of snow and I didn't even try go outside in it. I have most of my anxiety on step. It's like my brain tells me I can do it but my legs just don't work. It's very scary. Well I have an appointment for the muscle specialist in April, I guess he will do the muscle biopsy. I haven't been formally diagnosed but this has got to be what I have. Are you on any medication? Will doing exercise like walking or yoga help or slow down the progression? You just don't know how thrilled I feel to have someone who understands how I feel :bouncing:
Shellette
michigani
02-03-2005, 02:03 PM
Shellette,
My MDA doctor had me try different regiments of vitamins and supplements including Coenzyme Q-10, Creatine and Carnitine. Apparently for some MD sufferers they work. I personally did not notice any difference. I would gladly purchase $30 -$40 worth of this stuff a month if it was improving my life but nothing was happening after months of trying them. Of course nothing's going to cure the MD. These supplements supposedly help your muscles use energy more effectively. The bottom line is, it depends what kind of MD you have whether or not these things will make a difference.
As far as exercising goes, yes, you want to do LIGHT exercise. If you DO have muscular dystrophy, your body cannot replace damaged muscle cells. So you don't want to exercise until you are sore. This is the goal of a weightlifter but not us. On the other hand you do not want your muscles to atrophy, or shrink from non-use. You must find that exercise zone between damage and atrophy.
By far the biggest favor I've done for myself is to stretch. The last thing you want is uncooperative muscles. It's hard enough to move through the day without battling muscles that respond like taffy. I especially make sure I take 30-60 seconds, 3 times a day and stretch my calves. I have very weak shins resulting in foot drop. This helps a lot and prevents me from needing braces to hold up my toes.
Good luck with the biopsy. I've been through it and a couple EMGs so I can answer any questions. Again, think about contacting your local MDA clinic. They have huge resources and some very compassionate people willing to help.
Mark :)
My MDA doctor had me try different regiments of vitamins and supplements including Coenzyme Q-10, Creatine and Carnitine. Apparently for some MD sufferers they work. I personally did not notice any difference. I would gladly purchase $30 -$40 worth of this stuff a month if it was improving my life but nothing was happening after months of trying them. Of course nothing's going to cure the MD. These supplements supposedly help your muscles use energy more effectively. The bottom line is, it depends what kind of MD you have whether or not these things will make a difference.
As far as exercising goes, yes, you want to do LIGHT exercise. If you DO have muscular dystrophy, your body cannot replace damaged muscle cells. So you don't want to exercise until you are sore. This is the goal of a weightlifter but not us. On the other hand you do not want your muscles to atrophy, or shrink from non-use. You must find that exercise zone between damage and atrophy.
By far the biggest favor I've done for myself is to stretch. The last thing you want is uncooperative muscles. It's hard enough to move through the day without battling muscles that respond like taffy. I especially make sure I take 30-60 seconds, 3 times a day and stretch my calves. I have very weak shins resulting in foot drop. This helps a lot and prevents me from needing braces to hold up my toes.
Good luck with the biopsy. I've been through it and a couple EMGs so I can answer any questions. Again, think about contacting your local MDA clinic. They have huge resources and some very compassionate people willing to help.
Mark :)
warpig
02-09-2005, 12:35 AM
Mark,
Have you tried quanine? My neurologist is trying me out on it. I don't know much about it? It is supposedly an old drug.
Have you tried quanine? My neurologist is trying me out on it. I don't know much about it? It is supposedly an old drug.
michigani
02-09-2005, 04:53 PM
Not yet but I've heard it mentioned. I'll read up on it then ask my doctor. I know there's no cure but just feeling like I have a bit more energy and less fatigue would be great. Thanks.
Mark
Mark
michigani
12-04-2006, 06:00 PM
Well....something new happened recently that I haven't encountered until now. The day before Thanksgiving I went to visit my mom. She lives in a nice senior complex. I got out of my truck (I got hand controls 6 months ago) and had this feeling of dread come over me. I was 75 feet from the entrance and parked in the nearest HC space. I started walking (with my cane) up a slight incline with this feeling I wasn't going to make it. By my 20th step, I'd lost every ounce of confidence. I stopped in the middle of the parking lot. I couldn't take another step forward and was terrified to turn around. Eventually I did turn around and made it back to my car, too shaken up to attempt the "uphill" climb again.
I know a lot of it's mental, because if I have my wife or daughter walking beside me I'm fine and can walk into a place without usually holding on. But that feeling of vulnerability walking alone across open ground outdoors won't go away.
Today I went back to mom's, got out, cranked up my courage and made it in fine. (So it IS partially mental). But I came out and the wind had picked up and was howling. I had to ask a stranger (another male visitor) if I could please hang on to his arm. It was embarassing but much better than falling down! And the guy didn't mind at all.
Other than this pain-in-the-butt MD, life is still good :D
Mark
I know a lot of it's mental, because if I have my wife or daughter walking beside me I'm fine and can walk into a place without usually holding on. But that feeling of vulnerability walking alone across open ground outdoors won't go away.
Today I went back to mom's, got out, cranked up my courage and made it in fine. (So it IS partially mental). But I came out and the wind had picked up and was howling. I had to ask a stranger (another male visitor) if I could please hang on to his arm. It was embarassing but much better than falling down! And the guy didn't mind at all.
Other than this pain-in-the-butt MD, life is still good :D
Mark
aphilk
12-04-2006, 07:30 PM
Hi Mark,
Thank you for sharing your feelings - and fears. For those of us who are still pretty strong, it makes us realize what is most likely in store for us in the future - that is, unless they come up with a cure real soon!:) Would it be a good idea to have a walker (with wheels and a brake) available for scary situations when your family can't be close by?
Keep positive,
aphilk
Thank you for sharing your feelings - and fears. For those of us who are still pretty strong, it makes us realize what is most likely in store for us in the future - that is, unless they come up with a cure real soon!:) Would it be a good idea to have a walker (with wheels and a brake) available for scary situations when your family can't be close by?
Keep positive,
aphilk
michigani
12-06-2006, 11:16 AM
Hey aphilk,
As a matter of fact, I DO have a wheeled walker that MDA sent me. They asked me at clinic if I wanted one, I said "maybe" and 2 days later the UPS guy brings one to the door. I've not taken it out in public yet. Maybe it's a little bit vanity and a lot of stubbornness. Soon, I'll have to bite the bullet and use it just like I did with the cane and the HC parking permit.
Didn't mean to scare anyone. 95% of the time I'm okay with my situation and accept it. I just had a bad day that day. And like I've said on this board before; even though our friends and family love us and try to understand, no one can REALLY understand except the people on this board going through the same thing. Today, I'm back to my old self (high spirits). Thanks for the reply.
Mark :)
As a matter of fact, I DO have a wheeled walker that MDA sent me. They asked me at clinic if I wanted one, I said "maybe" and 2 days later the UPS guy brings one to the door. I've not taken it out in public yet. Maybe it's a little bit vanity and a lot of stubbornness. Soon, I'll have to bite the bullet and use it just like I did with the cane and the HC parking permit.
Didn't mean to scare anyone. 95% of the time I'm okay with my situation and accept it. I just had a bad day that day. And like I've said on this board before; even though our friends and family love us and try to understand, no one can REALLY understand except the people on this board going through the same thing. Today, I'm back to my old self (high spirits). Thanks for the reply.
Mark :)
belfiore83
01-02-2007, 03:33 AM
ive run into these situations all too often as well and it creates such anxiety. i finally gave in and use my wheelchair for just these situations and its given me such a sense of freedom!! i get in it, zoom to the place i need to be, use the chair lift to raise myself up and slip off, and then go about my walking once im somewhere i can comfortably get around. its really helped to cut down on that type of situation!
best wishes!
jess
best wishes!
jess
michigani
01-02-2007, 12:02 PM
Hi Jess,
What kind of lift do you use to get out of the wheelchair?
My problem is I can still walk, (at least on hard flat surfaces), but I'd really have a hard time getting OUT of the wheelchair once inside or once back at my car. (I have hand controls in my truck because my footwork's not too fancy). I'm very confident driving now that I have the controls. I feel much safer than I do walking.
PS - I read your post to my ADA thread and I understand. I had to leave my job, a year or two earlier than I would have because I couldn't get in the building. 7 steps up and the first 2 have no railing! I used the 10:1 truck ramp (no rails) in the back the last 2 years I was there. At Christmas I went to visit and had to call my old co-worker to come down and help me get in. That ramp looked like Mt Everest! Yikes! Hang in there (I guess we have too :) .
Mark
What kind of lift do you use to get out of the wheelchair?
My problem is I can still walk, (at least on hard flat surfaces), but I'd really have a hard time getting OUT of the wheelchair once inside or once back at my car. (I have hand controls in my truck because my footwork's not too fancy). I'm very confident driving now that I have the controls. I feel much safer than I do walking.
PS - I read your post to my ADA thread and I understand. I had to leave my job, a year or two earlier than I would have because I couldn't get in the building. 7 steps up and the first 2 have no railing! I used the 10:1 truck ramp (no rails) in the back the last 2 years I was there. At Christmas I went to visit and had to call my old co-worker to come down and help me get in. That ramp looked like Mt Everest! Yikes! Hang in there (I guess we have too :) .
Mark
belfiore83
01-02-2007, 01:28 PM
Hi Jess,
What kind of lift do you use to get out of the wheelchair?
My problem is I can still walk, (at least on hard flat surfaces), but I'd really have a hard time getting OUT of the wheelchair once inside or once back at my car. (I have hand controls in my truck because my footwork's not too fancy). I'm very confident driving now that I have the controls. I feel much safer than I do walking.
PS - I read your post to my ADA thread and I understand. I had to leave my job, a year or two earlier than I would have because I couldn't get in the building. 7 steps up and the first 2 have no railing! I used the 10:1 truck ramp (no rails) in the back the last 2 years I was there. At Christmas I went to visit and had to call my old co-worker to come down and help me get in. That ramp looked like Mt Everest! Yikes! Hang in there (I guess we have too :) .
Mark
There are wheelchairs available that has a seat lift built in just for our type of situation. It raises so I can literally slip off and walk. I am still mobile as well. On hard surfaces like you. My main difficulties are inclines (steps of course) and getting up from low seated positions. So I figured, save myself a world of worry and stress and just use the chair for bridging these types of areas/situations and then get up and walk when i get to my destination. I drive with hand controls as well :)
What kind of lift do you use to get out of the wheelchair?
My problem is I can still walk, (at least on hard flat surfaces), but I'd really have a hard time getting OUT of the wheelchair once inside or once back at my car. (I have hand controls in my truck because my footwork's not too fancy). I'm very confident driving now that I have the controls. I feel much safer than I do walking.
PS - I read your post to my ADA thread and I understand. I had to leave my job, a year or two earlier than I would have because I couldn't get in the building. 7 steps up and the first 2 have no railing! I used the 10:1 truck ramp (no rails) in the back the last 2 years I was there. At Christmas I went to visit and had to call my old co-worker to come down and help me get in. That ramp looked like Mt Everest! Yikes! Hang in there (I guess we have too :) .
Mark
There are wheelchairs available that has a seat lift built in just for our type of situation. It raises so I can literally slip off and walk. I am still mobile as well. On hard surfaces like you. My main difficulties are inclines (steps of course) and getting up from low seated positions. So I figured, save myself a world of worry and stress and just use the chair for bridging these types of areas/situations and then get up and walk when i get to my destination. I drive with hand controls as well :)
Falls grandma
04-10-2007, 12:44 PM
: I was just looking through some of the posts and when I saw Walking on Scary Surfaces I just had to write something!
I do well on hard surfaces and worry myself sick over grass,inclines,declines and of course ice and snow.Several years ago I thought I was being really good and went to weight watchers the day after Valentines Day. Well comming out I went down on the ice and broke my ankle had surgery the same day and since then have been a wreck if anything even LOOKS like water or ice on the pavement.
M.D. clinic also told me I would be able to get a little more walking in if I used a wheeled walker. That just because I have M.D. doesn't mean I shouldn't get out and walk in the mall.or on the pathway at the park etc. That a wheeled walker would give me back some of my freedom. I have promised myself this year to at least give it a fair chance. With the grandkids 2 and 5 years old if I don't get over my hangups with people seeing me use a walker I could lose out on watching them have fun. I get such enjoyment out of them laughing and jumping around.You see what I am trying to do here_-_-_- I am trying to convince myself.
I just wanted to write and say I can relate so much to what you said about FREEZING up when there are things that come up when I am alone and I'm not hanging onto my husband. Falls Grandma
I do well on hard surfaces and worry myself sick over grass,inclines,declines and of course ice and snow.Several years ago I thought I was being really good and went to weight watchers the day after Valentines Day. Well comming out I went down on the ice and broke my ankle had surgery the same day and since then have been a wreck if anything even LOOKS like water or ice on the pavement.
M.D. clinic also told me I would be able to get a little more walking in if I used a wheeled walker. That just because I have M.D. doesn't mean I shouldn't get out and walk in the mall.or on the pathway at the park etc. That a wheeled walker would give me back some of my freedom. I have promised myself this year to at least give it a fair chance. With the grandkids 2 and 5 years old if I don't get over my hangups with people seeing me use a walker I could lose out on watching them have fun. I get such enjoyment out of them laughing and jumping around.You see what I am trying to do here_-_-_- I am trying to convince myself.
I just wanted to write and say I can relate so much to what you said about FREEZING up when there are things that come up when I am alone and I'm not hanging onto my husband. Falls Grandma
michigani
04-10-2007, 08:15 PM
Hi Falls Grandma,
I UNDERSTAND COMPLETELY! My MD Clinic coordinator sent me a wheeled walker almost a year ago, so I'd have it when the day came. (MD doesn't always provide these, a wealthy man whose wife had MD donated a dozen to the clinic). Well my day probably came 6 months ago but I've yet to take it out in public. It's just that I've never seen a 46 year old man using one. Everybody that uses them is like 90. I'd almost feel less self conscious in a wheelchair. But there's no way I'm doing that until these old legs completely give out. I love walking no matter how hard and scary it's getting.
I have to go to a test in a couple weeks that my wife probably can't go with me that day. It's at a hospital. I think that will be the inaugural trip with the walker. There's no way I'm doing a hospital alone with just a cane. :dizzy:
Mark
I UNDERSTAND COMPLETELY! My MD Clinic coordinator sent me a wheeled walker almost a year ago, so I'd have it when the day came. (MD doesn't always provide these, a wealthy man whose wife had MD donated a dozen to the clinic). Well my day probably came 6 months ago but I've yet to take it out in public. It's just that I've never seen a 46 year old man using one. Everybody that uses them is like 90. I'd almost feel less self conscious in a wheelchair. But there's no way I'm doing that until these old legs completely give out. I love walking no matter how hard and scary it's getting.
I have to go to a test in a couple weeks that my wife probably can't go with me that day. It's at a hospital. I think that will be the inaugural trip with the walker. There's no way I'm doing a hospital alone with just a cane. :dizzy:
Mark