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DBowman

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Joined
Feb 14, 2007
Messages
74
Reason
DX UMND/PLS
Country
US
State
Virginia
City
Harrisonburg
I used to run afternoons behind the local elementary school on their track after work. In the evenings I would then do aerobics or yoga. But after being diagnosed with PLS and having falls, weakness in certain areas and having to go from stumbling to a cane to a walker in just a matter of a few months was pretty mortifying. My speech isn't the greatest as I slurr my words if I don't slow down when I talk and pronunciate better.

My self esteem took a bad beating when I realized I had to use a walker....I'm only 60 but walk like a 99 year-old. People look at you curiously when that happens..some even stare. (It BOTHERED me...but I didn't let it stop me) If I want to have any kind of life at all I have to get out there among society and just use my walker stares or not.
Even though I can't do things the way I used to, there is still comfort in just DOING things the way I can NOW in spite of the humiliation I feel (but keep to myself.) I see now how being handicapped affects the people you encounter....some smile and open doors, some look the other way.....some people treat you as if you're a small child (not knowing what else to do...they mean well, though). Sometimes I feel invisible but press on in spite of any negative feelings....

It is said that your illness/affliction shouldn't DEFINE you.....that's the most difficult struggle for me but with the grace of God I can overcome that, too....

There are 2 scripture based books that I would recommend from author Joyce Meyer and they are "Battlefield of the Mind" and "Never Give Up".....both awesome!
 
HI

I'll be darned if I'll ever feel humiliated because i have to use a walker and a scooter--nor should ANYONE who needs any device to be as mobile as they can be.

some may feel a little embarrassed, but I just can't see humiliated feeling for any reason.

I've used a cane since I was in my forties as my back issues caused me to fall quite often. Now that I have whatever it is I have, I use a rolling walker or a scooter 99% of the time. People don't like it--to heck with them. I've never once felt humiliated because I need them.

I hope your books helped you get past those feelings.

i'm thankful every day I'm not worse off physically than i am.

Keep on keeping on~!
 
Yes, it's certainly different being disabled and moving out there in the public. I have a great ALS support group which I attend. They are of the mindset that 'we' have the ability to change society's attitude in dealing with the disabled. Many of them wear hats or shirts mentioning ALS and get into discussions when asked about it. They act confident in public, meet other's stares and smile, thank them for their kindnesses, and always look for opportunities to educate people about this disease. 'We' are the face of this disease. Perhaps think of it as doing your part to raise awareness and help for ALS. stay strong. You continuing to go out and do things even when it's hard is a testament to your strength and determination.
 
I too was very athletic........i was a competative long distance/cross country runner and i also did bodybuilding/wieght training.
At just 31yrs i was struck down with this and had to use a stick,now at 45yrs i use a mobility scooter.........i did say NO to a walker,thats just me.
Like you all here i get the stares ect ect........i try not to let it get me down but it does on bad days.

We are still the same person ,if people have a problem then its because there ignorant.
An able bodied person can not understand what its like to live with disabilities..........i'm sure we would not if we did not have pls/mnd.
Living our lives to the best of our ability is what matters,not what others think.
(((hugs)))to you all.
 
There does come a time when we have to just not care anymore about what others think (or don't think) about how we get around now a days. I have seen it on both sides of the spectrum. There are those who are helpful and curtious, there are those who are over the top to being annoying trying to be helpful, then there are those who would rather you do not exist for whatever insecurity they have in their personality. I have also seen disable people pass judgement on others who might have a different disability than themselves and think that their own rights should take presidence over the other. (yes I know there are some who abuse the handicap parking but that is beside the point).

I agree DBowman that continuing to move pass this reality is a must. After all, we make the most of our lives what we can with what we have and live fully to the purpose of which we were created. Only then will our lives be complete and fulfilled.
 
most people who were athletic when young dont run at 60...those who run at 60 never did much when young...theres a price to pay......so many athletic people seem to have neuro probs later....getting old is the pits..but thats the way it is....i had a good time, bet you did too.....feeling humiliated is you just missing the good old days...as we all do....put your paranoid thinking to bed and be careful of depression....be proud of yourself ....johnny
 
I fully understand trying to overcome humiliation, I have bulbar als, and because of that the muscles in my face are shot, and my bottom lip hangs down pretty bad. I have seen some people look at me funny, and sometimes it upsets me and sometimes I just ignore it. I was always told that I was an attractive 65 yr old woman, who didn't look her age, and now I look in the mirror, see the lip hanging and the face sunken, and somedays I just cry and cry. Then I realize that it glad to still be alive, and for now can still walk and move. I don't miss the eating part, but I do miss the talking, typing on a lap top is just not the same, but it is what it is. We all have to try to go on with this life we have been dealt, and I know that some people have it way worse than me. My family keeps me going, and to hell with the people who stare
 
What other people think is really none of my business
 
Just out of curiosity, is Jess's hotdog shop still on court square?
 
really like that reply momap...and chrisoski...goodlooks dont last forever...beuaty is only skin deep...personality lasts forever...johnny
 
Just following on ........i look well,people think i am in my late 30's not 45....i am tall...told i am quite attractive.
so people look at me as if i am an alien or a fake.

A friend of mine who is a none smoker has just been diagnosed with terminal cancer,like my aunt who died (was a smoker)it has spread to all the lymh nodes and brain.....i saw her today,she looks a picture of health and is better able bodied than me.
Just shows you can never judge someone by looking at them.
People say "you look well" but so do people who are terminally ill.
By the way,my friend has such a positive outlook despite her illness.....always smiling,never complains or feels sorry for herself.....a true inspiration.
 
All the feeling expresses by the original poster are familiar to me. When you exercise and eat right all your life, you expect you will be healthy. Then you get hit with ALS. I went from the cane, to the walker, and now I'm bed-ridden in a nursing home! I never expected to be here, and I'm angry that this has happened to me! Yes, it's humiliating! But you are not alone.

Eileen
 
Johnny, I like you!
 
I am getting to the point of not caring why people look at me stupid or brush by because I am too slow. I use a cane and without it I would likk like a drunk stumbling around so either way they would stare. As things progress I will take it as it comes. I still go fishing and camping. I need help getting to the shore but I would scoot on my butt to get there if I have to.

I think we all have a great attitude, and we are all beautiful. Johnny you are the greatest.
 
I got it! Put a sign on the walker that says "I have X" -- insert disease for X -- and ignore them.

Johnny, I like your reply.

People can be idiots. We have a saying in our house--consider the source and move on -- even though it's sometimes hard to do.

Still--don't let anyone make you feel humiliated. You didn't bring this on yourself. Take care!
 
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