Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. I am attaching a letter Matt wrote 5 days after his diagnosis.
A FACE TO 3 Letters
Wednesday, May 29, 2019 Hello friends. After being diagnosed, I said, "I am so not putting this on social media." But, after much thought, have decided to do exactly that.
First, I will tell you that I have been diagnosed with ALS. This is also known as Lou Gehrig's Disease. It is a motor neuron disease that affects voluntary muscle movement. It is not contagious. The disease is progressive, which means the symptoms will become more severe, and noticeable over time. ALS affects everyone differently, so there is no way to predict how quickly it will progress , or which muscle group it will affect. There is currently no cure for the disease.
Something I would like you to know, is that even though ALS will change me physically, my ability to walk and talk, I am still the same person inside.
I remember when the "ice bucket challenge" went viral. I honestly could tell you that, I did not know what ALS was. I am sharing this, so you can now put a face to the 3 letters.
Having close friends that recently had a tragedy in their life, sometimes we don't know what to say, so it is awkward when we see them in person.
Because I feel that I walk sometimes like a palsy, I feel like people are staring at me. I got to thinking how we tend to stare at people when they are different, not even knowing what they might be going through. So, I have an idea that I would like to share with you.
After reading so much overwhelming information on the internet, I have learned that if a person makes it to the final stages of ALS, that the last muscles to work are the eyes and mouth. I thought, how will I be able to communicate to them, that I Love them? How hard would that be? Hearing your loved ones telling you that they love you, and not able to say it back?
This is where, I came up with an idea. A wink. You see someone having a tough time…give them a wink. You see someone walking funny, smile and give them a wink. Don't know exactly what to say to someone? Smile and give them a wink.
I am mostly saddened, that all the people I care about will have to watch me slowly deteriorate, and eventually die. On a positive note, I have accepted this, and know where I will be when I die. Faith, Family, and Friends is a motto said in our family.
My final thought to try to remember, is this. If you are out, and about doing anything. You could be shopping, driving your car, walking, boating, at a sporting event, at a bar…..whatever. Keep in mind, that a person that may be having a tough time, or having a bad day isn't necessarily frowning. They might be smiling, and grinning ear to ear. Smile, and give them a wink. If you see someone struggling physically, try not to stare. Smile, and give them a wink.
I understand, some people will comment, and some will not know what to say. It's ok. Smile, and give a wink.