A Letter for Washington

This letter comes from Donna Mund. It is a perfect example of how powerful individual stories are in our efforts to advocate for ALS!

Dear Honorable Congressman or Senator:

My husband Lyle Mund was diagnosed with ALS in February, 1992. It has been many years of watching a wonderful man struggle with doing what we deem to be easy and ordinary. For him the work that would take us 10 minutes can take an ALS patient an hour to do.

Lyle has endured alot over the past years. He can still do many things that a "normal" person can do. It just takes him a bit longer to achieve what he needs to do. I, as his spouse, do not try to interfere when he is doing things even though I know that he is struggling. I don't think it does him any good to treat him as if he were dying. I sometimes forget that he has this mean disease. I just treat his as I would treat any other person. He is still able to drive which is fantastic. The problems that we run into are really embarrassing for him at times. He has gone to gas stations and pumped gas and when he is done paying for it, people that are there call the police thinking that he is a drunk and that he has had one too many and should not be behind the wheen of a vehicle. He has been pulled over so many times I can't even count. He sometimes jerks the wheel when he has a muscle spasm which leads the police to pull him over thinking that indeed he is drunk driving. They ask him to step out of the car and to do a field sobriety test or breathalizer test. Lyle informs that he is not able to do the field sobriety test or the breathalizer due to his ALS. But, he will always offer to go to the police station and take a blood test that will prove that he is not drinking. He does not even drink alcohol in the first place. We are so used to it that we have the papers that legally prove he is able to drive on the roads. Lyle has to go to the secretary of state every 2 years to get a drivers road exam. He passes them every time and carries papers that show he is a responsible driver.

Lyle would do anything if someone would only give him the chance to work. Most employers are worried about the liability. He is willing to sign a waiver stating that he will not sue if he gets hurt. We think they should have something available for the handicapped in the area to do for work. Something structured around handicapped needs. He contacted Michigan Works and was invited to come to a workshop that would help him to find a job. They told him of the success rates that they have. When he got there, they tried to help him build a resume. That is all they had to offer. It is very hard to build a resume for a person who has not worked for 20 years. He only wants someone to look past his disability and to see his ability.

We once went to the Department of Human Services to try to get food stamps. We were denied. They had the nerve to tell Lyle to divorce me and then he could get all the help that he needed. We consider this an insult. We now go to food pantries for food. At least they don't tell us to get a divorce. We do not believe in divorce and think it ludicrous for someone to suggest it in order for us to get a little help. We did not even get a raise on his social security this year. He only makes 632.00 per month on social security. As you can see, we are not rich by any means. Also, that 250.00 that the government gave to us last year as his incentive was deducted from our income taxes. We got the double whammy. Thank you for this. There are some months when Lyle has needs that our finances can not cover and then we have to make the choice of paying the utilities or getting what he needs. I can tell you that his needs come first. I have had to juggle things for many years and will continue to do so, but it would be nice to have the government stand behind the people who are the forgotten ones who suffer from terminal illnesses and their families who choose to stand by their side until the very end. I am one of the people who will be here no matter what and consider it a priviledge to take care of someone who is so special and dear to me.

In closing, I am praying that you will read this letter from me knowing that we are your constituents and we also have a voice. We are voters and will let our voices be heard. I want to know that my senators and congressmen care about what is going on in my home and in the homes of other people who suffer these terrible illnesses that can only have one tragic ending. The loss of a person due to not being able to find a cure. I hope that you will consider finding funding for research. We could use that. That is the only way that we can conquer this disease. I will continue the fight for the rights of people with any sort of handicap and to remind all that they are citizens of this great country just like you and I are.

Thank you for your time and I hope that my one little voice will be heard loud and clear in the halls of Congress in Washington, DC.

Sincerely,
Lyle and Donna Mund