Wrong Impressions, Stereotypes

[Bujy]

Please dont get hung up on my words here. Try and hear what I'm saying. I'm not so good with expressing myself sometimes. This forum has really opened my eyes.

Many of you are unable to speak, walk, use your hands, etc. Many varieties in how this disease is affecting you. Your minds are just as the were before this dreadful disease. In the past, when I've seen people out and about with these challenges, I think down to them. Well, not down, but dont think of these people as having thoughts or ideas like before the disease affected them. It just amazes me how well some people can still get on with their lives after this dreadful disease and other diseases. I've had this stereotype in my mind of those who are terminally ill, etc. It's been totally shattered.

The intelligent posts and talking with a couple of you really has opened my eyes. Unfortunately, until you see this and other diseases first hand, it's hard to know.

Although your lives are far from easy, I've learned that it really is possible to have a satisfying life. Just because you are afflicted with all these symptoms, you can still experience fun, and be a contributing member of society.

I'd really like to thank you guys.

No I'm not drunk. LOL. Although a glass of wine would be nice now. I think I'll bring my kids to the MIL's house and have some wine there. We're working on a puzzle now. Fun stuff.

Cheers.

I'm almost ashamed to be writing this, but it really is truly amazing.

 

[joelc]

Drive a little further and you can have a glass of wine with me!
Take care!

 

[AHands]

Thank YOU!

...you can still experience fun, and be a contributing member of society...

It's possible, and probably even necessary. It's easy to accept that pessimism can be deadly. Please accept also that, conversely, optimism can HEAL.

 

[dsiple]

I am a firm believer that we all have something to teach to others, as well as, something that we can learn from everyone, regardless of the situation or circumstances.

I went to my 20 year high school reunion last Fall and was very apprehensive about going, but I went and had a great time. At first, people were afraid to approach me, because many people didn't what was wrong or were afraid to ask. As people would come to talk to my wife and I, many of them were talking very loud to me, assuming that because I was disabled and could barely talk, that it had somehow affected my hearing also. I slowly explained to everyone, with the help of my wife, that I was the same old Duane that I was 20 years ago, but now my muscles don't work. Since then, I have received countless emails from classmates, wanting to know how they could get involved and help or where they could make a donation.

If I would have chosen not to go, I would have missed the perfect opportunity to learn a lot from dozens of people, and teach them that just because someone may appear to be different or to have changed, doesn't always mean that they have. Thanks.

 

[thelma313]

Duane, good for you! That is an amazingly courageous thing you did. I hate it went people shout at my father or talk to him like he's slow. I always tell them he is the smartest person I know and has better hearing than a wolf.

 

[kylisa]

Most everyone has some type of ignorant bias. For instance, the bias against overweight persons, those of lower social standing, those of different races or colors.
Even bias against those with physical handicaps.

Over the years, I have had to rethink my stand on several issues. One of the things I have learned over the years is that you have to separate the person from their difference. When you strip away everything, we are basically all the same. We all need food, clothing, shelter, love, understanding, and the opportunity to make our lives worthwhile.

I have noticed how much differently my mother has been treated since her decline. My own father has difficulty understanding that she is basically the same in mind, all of her decline has been physical. He tends to treat her with kid gloves and she resents it to some degree.

We just have to be the best we can be, do the best we can do, and be willing to rethink things if and when the need arises.

 

[brendapals]

Ah, yes, I can relate...

It is amazing the way people react to me now. Almost like they are scared to ask anything. I tend to err on the side of many people are just un-educated. And I still enjoy educating perfect strangers about ALS.

All of the 260+ people that came to the ALS walk last Sept-friends, family, people that were friends and family of my friends, countless connections. All of them supportive of the cause, as well as supportive toward me.

I commented to a friend yesterday, it's funny, and sad, I only keep up with a handful of people from the walk. My family, of course, and 2 or 3 friends that I talk to at least 2 times a week.

I guess I feel the most pain for my husband and our boys. They know me as the talkative, fun-loving, independent, free spirited woman that I truly am-only on the inside now more than the outside. We have adjusted so well to our "new normal" that people don't really know what to ask.

Just last night, after baseball practice, my 8 yr old and I went to the drive-thru at Wendy's. The girl kept repeating "I'm sorry, I can't understand a word you're saying mam" , so I had my son order thru the back window. When I pulled up, I asked her if she could understand me face to face, she told me the head-set thingy didn't pick up my voice too good. Now, my 8 yr old rolled the back window down again, and said, very politely, "haven't you ever talked to someone with ALS?"-thought I would just melt!

ain't life grand:razz: