Let me start by thanking everyone that read and commented on our first blog post.
To say that Matt was excited would be an understatement. He truly loved hearing the comments. I personally was overwhelmed by the show of love and support. Thank you!
I have started a Facebook Group that you can join and leave comments there and I know Cindy will read them to him! He called me every day to see if there were any more comments. You can join the group here:
You can change the notifications settings there also. This will make it easier for some people to comment, but for those without Facebook to still follow the blog.
Pictured below is Matt in the middle of part of our crazy family on Christmas Day-
Trying out my new selfie stick.
Surrounded by the love of family!
Matt wanted me to talk about the things you don’t think about when you’re young and healthy. After all, you don’t know what you don’t know, and he doesn’t want people to take those things for granted!
Using a Phone: Yes Matt’s phone is voice activated and he can tell it to call someone, but it’s a flip phone and his finger dexterity makes it hard to open sometimes.
He can’t really see to use a smart phone, because of his vision. (Not very smart now is it?) What we need is a smarter phone! Maybe there is something out there already, a phone that he could easily open- and be voice activated - that’s something to look into further (or invent)!
Exercise!: Matt said listen to the doctor because “they won’t make you do anything to hurt you”, and he said when he does his exercises he does notice a difference and it helps him through the day. He gets a lot of numbness in his hands and feet - prickly, like when your foot falls asleep — only it doesn’t go away and he can’t control it. He said the exercises help with that but it never really goes away and every few weeks he has a spell where it gets worse. He said “Just do what you can, that’s all you really can do” and I added and sometimes you have to do what you can even if you don’t really want to.
And most importantly “Take care of yourself when you are young”, you don’t know when you won’t be able to do a simple thing- like walk.
Read: Loss of vision was one of the first symptoms Matt had. MS affects the optic nerve.
Matt said he can eventually focus on something in close range if he looks at it long enough; but it takes a long time. He also said he has a lot of double vision and it makes it hard to watch tv so he “just listens.” He can’t read anything any more because it’s too small and he can’t get it in focus. He said just sitting and talking to me, he could see me really well, but a few feet further away, he couldn’t make out who it was. I told him I once heard on a talk show that if you put vaseline on goggles and tried to see through them, that is what it’s like for someone with MS to see like. I asked him if that was accurate and he said it was. Read, because you don’t know how much you’ll miss it. Not just reading words, but music too, and if you never heard Matt sing….you’re missing a real treat! Along with retiring from work, he retired from the church choir because he couldn’t read the music. He still knows a lot of words to songs and he still sings in church when he hears a familiar song - and he still has that beautiful voice!
Independence: When you are young you don’t think much about hopping up off the couch and going outside on a beautiful day. Matt said he “loves to sit outside or in the garage.”
He knows that he can’t do that without assistance because of the risk of his falling.
He’s already broken a hip and an ankle after a fall. (Both required surgery and extended hospital stays) Not that this is the time of year to sit outside, but it’s one of the things he likes doing. He said “you don’t think about that when you’re young and healthy.”
Navigation: You don’t notice how many places are NOT handicap accessible until you travel around in a wheelchair. Matt said it’s hard and he thinks of “all the bathrooms I remodeled, but didn’t think about a wheelchair.”
(I notice in my own house how we’re not really handicap accessible)
You can add things like ramps, but in an older house, an older bathroom- it just wasn’t set up to make room for a wheelchair!
Parking in a handicap spot too, Matt said sometimes even a handicap spot doesn’t leave enough room for Cindy to navigate, let alone enough room to get him in and out of.
"Things you don’t think about when you’re young and healthy……”
As I sit and type this, I think of the impact Matt has had on my life. When I was in junior high he told me to go out for student council and I did and I was voted in! In high school he told me to join Youth In Government and I did, it was one of the best experiences of my life. (I’m not sure they even do that any more, but it was a great program where the students ran the government for the weekend at the State house in Columbus.) He didn’t know it (or maybe he did) but he helped to develop the leader in me. I wanted to be like him. He was so well liked, so popular and really paved the way for me. Now he did things to embarrass me too, like when I was in the 7th grade and I had an extremely huge crush on an older boy. At the basketball games they used to rope off the court between games and at half time, he was holding the rope and I was walking by at the same time this guy was. Matt stopped me and the boy and he said “Hey, This is my little sister, Kellie” and while I wanted to crawl under the floor from embarrassment, I was excited at the same time. Always looking out for his little sister. (Yet he made me ride the bus because it wasn’t cool to drive his little sister to school….) We were young and carefree and never in a million years would we have thought we’d be talking about things like navigating in a wheelchair or me typing a blog because he couldn’t see to do it any longer. Matt is a great guy, trapped inside his own body now and I am honored to share his stories with you all.