Life Doesn't Have to Stop Because of ALS
My husband Brian and I have always considered ourselves to be just regular people. We both served our country as Marines. Brian's tour of duty was in Desert Storm and I was stationed on the East Coast. We married, had a son and now we live in a bungalow in Lincoln Park.
Our greatest joys have always been our love for each other, our family and friends; helping others as much as possible and the faith we share. We have been blessed with a wonderful life. Now we are blessed with this awful disease.
It began in March 2007. All three of us came down with pneumonia and I had to be hospitalized. When I got home, I cared for Brian and that's when we noticed his body twitching. It would come and go. He felt extremely weak and tired; his face started drooping on the left side. We thought he might have had a stroke or it was symptoms of his post-war traumatic stress disorder.
After many doctor visits, treatment for Bell's palsy (unsuccessful, of course) and scores of neurological tests, we were finally sent to what is now the Hiller ALS Clinic at the DMC. On May 23, 2007, Brian was diagnosed with ALS.
The first person we talked to at ALS of Michigan was Joanne Berry. We don't know what we would do without her. Then we met speech therapist Lisa Bardach - Brian's speech was the first thing to go - and she has helped us immensely with our communication needs. Stephanie Kline, Sue Burstein-Kahn - everyone at ALS of Michigans is simply wonderful. I wish you could see how Brian's incredibly beautiful blue eyes light up and sparkle every time we visit.
ALS of Michigan helped us when we were struggling to get veteran's and social security benefits. (This will be easier now with the new regulations.)
How Things Change
Before I left my job to become Brian's full-time caregiver, we were lucky to get a scooter through my insurance. Brian uses this every day now because he can no longer walk. He's losing ability in his hands, and this is especially frustrating for him. Brian was a very talented woodworker, creating some of the most beautiful pens, scrolled crosses and furniture. ALS has robbed him of these abilities. Feeding has become an issue because his tongue is paralyzed.
Our son Matthew is now 17. Next year, he's gong to college and wants to be an architect so he can design and retrofit buildings to make access easier for people like his dad.
We donate to ALS of Michigan every month because we can and we want to help others who are not as fortunate as us. We've all participated in the Walk 'n Roll for ALS, and I make myself available to talk with veterans who have been newly diagnosed with ALS to help them learn the ropes. We still like to help others as much as we can because it takes the focus off of how bad things are for us.
We miss our old life, but this is our new life. Like everyone else, we have good and bad days. I have to say that humor gets us through a lot of bad days. Brian has an excellent sense of humor - he can say one word and we all crack up. Our faith and our love remain strong. We celebrated our 20th anniversary in December. We are blessed with good and helpful neighbors and friends.
The hardest thing I've had to learn is how to ask for help. But I realize that you can't get help if you don't ask for it. ALS of Michigan is always here to help us. All we had to do was ask. And they keep the light of hope alive in Brian's beautiful blue eyes.
~ Porsha Chalmers