Thursday, September 22, 2016

Groundhog Day

Matt’s life now is like the movie Groundhog Day where every day sort of seems the same and just not the life he thought he would be living at 54 years of age. (Matt just turned 54). 
He has good days and bad days and the bad days he seems pretty bummed out about life.
Of course he’s alone with his thoughts while the rest of us our out living our lives, working, making a living, etc…. and don’t get me wrong, he understands that….but for him, he’s stuck in a nursing home.  It’s easy to feel forgotten, unwanted and like a burden - and he does.  He has some friends there and the staff has been good to him, but what he’s really struggling with is to find a purpose.  What is his purpose for living a life with MS, confined to bed or a wheel chair?   He has been sort of down lately and I encourage any of you reading to take the time to have a real life “Chat with Matt” and go visit.  He loves visitors. 
It helps distract from the reality of what “is”.
He is frustrated by not being able to be a “real” husband to his wife and he is angry at all this disease has taken from him….his job, his house,  his ability to see, to drive, to walk,  and even sometimes to talk.
He knows he messes things up and he gets frustrated. He says thing he doesn’t mean and means to say things he doesn’t.  
He gets frustrated when he spills drinks or food. I told him he can’t help it and he knows that too.

If you’ve ever had a pinched nerve, think about how that feels, and think about all your nerves being pinched - that’s how he feels. Some days are worse than others but the sensation to feel the grasp on a can of pop or a sandwich, it just isn’t there and he literally can’t help it.
He wanted to talk tonite….to vent….and I just let him.
I told him it sucks and there is no other way to put it but to say it sucks and I wish I had magic words to make it all better.
I told him it’s ok to be mad and hurt and all of that.
I don’t know why he got this disease, but he did and he has to take it one day at a time, even one minute at a time. 
It’s times like this that I feel helpless.
As much as I want to make it better for him, I can’t.
There is no magic wand to wave to make it all better.
I told him Matt, you can’t change what is, but you still have a lot to be thankful for, a wife and kids and grandkids now! You have had a great life until this happened and you have to focus on the positive and not dwell on the negative.  He said “It’s hard”.  I tell him I know…but I really don’t know. I have no idea what it’s like to be in his situation and I try to be compassionate and understanding and patient and kind and I listen. 
His purpose lately has been to get a pizza party at the nursing home for the residents so he started selling suckers - he wanted to sing for money but they told him he had to give people something tangible for money - and he’s raised like $70 - and it gives him something to focus on - and that’s what he needs- something to focus on. 
We haven’t done an update lately because we really try to stay positive but the reality of this illness is there is a lot of negative and I only hope that I bring a little happiness to his life and to his day.
When I left to night he said “I love you so much” and I said “I love you so much, back” and I do love him more than words could ever say - my big brother, my mentor, my friend, my hero. 

Thursday, June 9, 2016

It’s a Small World After All….

We haven’t updated in a while and Matt wanted everyone to know he’s at the Bellevue Care Center, Room 107. It’s at the corner of Flatrock and Gardner Roads in Bellevue, OH, south of Route 20.  
He loves visitors!  

He told me today that being in the nursing home,  he realizes how small the world really is. He knows people that are also residents there and many of the employees -- he knows someone they know and he said “It really is a small world” and it’s just “really cool” to talk to so many people.  
What do they say, Six Degrees of Separation? (The theory that anyone on the planet can be connected to another though six or less people.)  I think he’s proved that in talking to people there!!

It’s been a bit of a roller coaster since he got settled in, while his “world” stays the same for the most part, changes are happening all around and he sometimes feels very isolated from the outside world.
MS has taken so much from him already and now he’s faced with the reality of the house he and Cindy called home, their little “O” Farm on Dining Road, will be sold.  Not an easy decision for sure, but way too much for Cindy to keep up and certainly understandable. Matt said he gets that.  Matt said “My world turned upside down”. It’s a lot to absorb, but he’s learning to accept it and while he understands it, it’s hard on the heart.  He told me “I’m trying to keep a good head on my shoulders, I had a few bad days, but trying to stay upbeat and positive.”  (Personally, I think that it’s a big reality to him that he won’t go “home” again…and that’s a tough pill to swallow). 

Matt’s had a few outings while he’s been there and really enjoyed the visit to the Trout Club. 
(He worked there when he was younger) and really enjoyed telling stories about that. 

One of the very awesome things is that they started an MS Support group last month and they will have another meeting on on June 22 at 10:30 a.m.  He said the Activities Director was the one that started it for him! If you are around that day, please come and show Matt O. your support!  (It’s at the Care Center)

All in all he is adjusting to life in the nursing home, he’s getting therapy, and said everyone has been very good to him. He really likes all of the people. 

He loves to have a diet pepsi and chat - It’s kind of “our thing” 

He said he likes the blog because “People want to hear what I have to say, I don’t really get it, but they seem to like it!” (You BET they do Matt O!)  He really loves the comments and we all will read them to him so please….comment away!! (If you haven’t done so, join our Facebook Group) 

Friday, April 15, 2016

Home is where the heart is…...

Matt is getting settled in to the nursing home. 
Bellevue Care Center
1 Aldrich Sq.
Bellevue, OH 4481
(Corner of Flatrock and Gardner Roads)
He would love visitors!
It reminded me tonite of how social Matt has always been.  Our brother Paul was leaving when I got there, his neighbor across the hall a young girl (29) came by and I got to meet her and then our old neighborhood and one of our dad’s closest friends Jim Yantz came by to visit. Matt thoroughly enjoyed that!  They talked about people they know and life in Bay View! (Where we grew up) It’s amazing the names he remembers when I can not! 

More importantly…..we had ice cream! Butter Pecan - Toft’s the best!  He loved it!
And he took a selfie with me :)
Matt said everyone at the care center has been so nice and he’s getting to know people and know his way around.  He said he knows life as he once knew it is over, but he will make the best of this. He likes the stimulation it provides and it’s motivating to keep moving. He said again how he didn’t ask for this disease, and he can’t help how much has been taken away from him (vision, ability to walk and be independent)… 
We don’t understand the “why” but can’t dwell on it, it is what it is. Acceptance would be a good word for it. The “new normal” is something he will adjust to. He does love seeing people and talking to them. He’s getting to know people and I saw signs of Matt O from high school - caring and compassionate to the other residents, chatting, listening to their story and sharing his own. If you knew Matt in high school, he was super popular and I can totally see that happening here!
He also said he’s feeling good and he was very upbeat! 
He was very excited about seeing all his kids last night and is really looking forward to the grandchildren that are due in July and October! One of Matt’s tag lines “It was pretty cool!”  He’s very proud of his kids and he gets a little spark when he talks about them. 

When I left he was watching the Indians and we left each other with a “Go Tribe
He loves hearing the comments people people leave… a LOT and he’d love for his friends to visit him! He’s in room 107.

The MS Walk is coming up May 7 - if you haven’t donated or if you want to walk….. Info is HERE 
and if you aren’t on our Facebook Group - it is here

Monday, April 4, 2016

MS has taught me…...

I recently found a Facebook post on a page I like called Lift MS.

They asked you to fill in the blank. MS Has taught me…..

I was touched by some of the comments I read from others with MS and shared some with Matt and also asked him to fill in the blank.
He said MS has taught him “To Live”….
Even though he lives in a much different way than he ever imagined and there are days he wants to give up…. He said “It’s hard, ya know?”
And he thought it was very cool to hear what others had to say and he said he can relate to it all.
He also said there are times he wishes he could “blame somebody” -- but it’s "nobody’s fault.”
He said all he can do is his best and he tries, and he doesn’t “want to be a pain in the butt.”

Matt is also very excited about Team O and the MS Walk. We have raised over $1300 for our Team and have 26 registered team members!  At our Coffee Hour at church we raised over $200 and Matt is VERY Thankful to all who came and all who donated either online or at coffee hour. (Our church family is amazing!)
March was MS awareness month and he can’t stress enough how important it is to raise awareness.
He said it’s “So cool” that so many people are rallying around him!
You can Join Team O. HERE 

MS is hard he said, “it sucks”. He said he’s really does’t have any pain like others do, but he’s tired all of the time and the lack of mobility is just hard.  When eating,  he said he chokes a lot and he doesn’t like that he make a mess, but he really can’t help it, and he feels bad, even embarrassed by it.
He said “just everything is hard”.  He said he knows it’s important to do his exercises and even though he can’t do a lot, he knows it helps keep his joints loose and can only do what he can but to everyone it’s important to “keep moving!”

Just a reminder you can keep up with Matt O. at our Facebook page “A Chat with Matt” 
Just hit “Join Group” and we will add you.

As always Matt looks forward to hearing comments either here or on the Facebook page and if you can’t do any of that, you can email me, and I will be sure to share them with him!

Thank you for your support! (Special Thanks to Melanie Boyd for the decorations at coffee hour!)

Monday, March 14, 2016

Just Tired

Matt has not had a good week.  He’s been pretty depressed.
Your words of encouragement and kindness really mean a lot to him. 
I asked him what was going on and he said “I’m just so tired.” 
He also said he’s tired of being tired and it’s “just this disease.”
He told me “everything about it is hard, it’s hard to carry on when you can’t do anything by yourself."
He went out to dinner recently with my sisters and aunt and he said it’s so hard when you need help to eat and he doesn’t want to “bother anyone.”  I told him I hope he knew we didn’t mind helping him and he said he knew that but he just really “doesn’t want to be a burden.”   He said he knows we don’t mind, he just really wishes he could do it himself.
Pictured Kellie and Matt on Christmas Day 2015

More than anything I wish I could wave a magic wand and make him better. 
Like anyone with a chronic illness, he has good days and bad days, but lately he’s had more bad than good. 

We talked about our Coffee Hour at church this week and he is really looking forward to that. He said “I’ll be at church, too.”   
Sunday March 20, 2016.
Church starts at 10 a.m.
Coffee Hour Following at:
Congregational UCC
205 Main Street
Castalia, OH  44824
(The white church by the duck pond)

If you are available, please rally around Matt and show him you care!
I think it will do him a world of good to get out and see people!

March is MS Awareness month and we wanted to share some of the symptoms of MS:

Pain areas: in the back or eyes
Pain circumstances: can occur in the back due to head nod or with eye movement
Tremor: can occur during precise movements, in the hands, or limbs
Muscular: cramping, difficulty walking, inability to rapidly change motions, involuntary movements, muscle paralysis, muscle rigidity, muscle weakness, problems with coordination, stiff muscles, clumsiness, muscle spasms, or overactive reflexes
Whole body: fatigue, dizziness, heat intolerance, poor balance, vertigo, or weakness
Urinary: excessive urination at night, leaking of urine, persistent urge to urinate, or urinary retention
Sensory: pins and needles, abnormality of taste, or uncomfortable tingling and burning
Visual: blurred vision, double vision, or vision loss
Mood: anxiety or mood swings
Speech: slurred speech or impaired voice
Also common: acute episodes, constipation, depression, difficulty swallowing, difficulty thinking and understanding, headache, heavy legs, numbness, numbness of face, rapid involuntary eye movement, sleep deprivation, tongue numbness, or difficulty raising the foot
Matt said it’s safe to say he’s experienced them all and it’s just so hard to explain. 
Please join us in walking for a cure - Walk MS in Sandusky CLICK HERE
If you haven’t joined our Facebook Page, a page to leave a note or thought: Click Here
Not everyone can leave a comment here and that is one of the reasons we made the Facebook page.
If you’d like to send a card to Matt - I know Cindy would read them to him:
Matt Orshoski
11311 Dining Road
Bellevue, OH   44811

Sunday, March 6, 2016

Breakfast of Champions

My weekly ritual on Saturday mornings is to meet my sister Robin and Cousin Sue, we go to Weight Watchers and then have (a healthy) breakfast after. This week we went to Berardi’s because it’s close to where the meeting is and we like it.  To our surprise we walked in to see Matt O. and his high school buddies!
Matt O. with (Left side) Mike Kuns, Larry Felske, Tom Barnes and Right side (Sue and Robin) Don Pfeil, James Schaufler, Jeff Warren) It was such a nice surprise and it’s so nice of them to do this for Matt!  Matt told me he loves getting together with them!

Then today, we celebrated our oldest brother Paul’s birthday and breakfast out again!
Pictured Matt O, Robin, (me)Kellie, Dorene and the birthday boy Paul. 
We went to Bay Bell, in Bay View, where we grew up and it’s like going to Cheers….where everybody knows your name!  Matt said he loves just sitting and talking and reminiscing.
We KNOW our mom would be so proud to see her kids together. Only missing Todd O. (He lives in Georgia) but Paul took care of that and photoshopped him in :)
Todd plans on being here for Walk MS and all six of us will be there to support Matt O.
Matt says “I can’t wait!”

Matt’s slowed down this week and the very real possibility of not being able to live at home is a reality that he is ready to face. He recognizes he needs more constant care than he can get at home. He said he can’t really explain it but “I’ve slowed down a lot”. He said notices it in his speech and his memory and he knows “I should remember things that I don’t.” 
Matt gets around ok in the wheelchair but the risk of falling is warranted since he’s fallen twice and broke a hip and an ankle in the last couple of years.  He also has lost a lot of his finger dexterity and trouble gripping things, even to eat.  We talked about that a bit and he said it’s ok, because he’d be around people and still “get to see everyone”.  
Matt loves this blog and his way of connecting to everyone and loves hearing the comments that everyone leaves!  
I was telling Matt about Pastor John’s sermon today and I’m sure it’s not the whole message but what I took away from it is about knowing your worth. When you’re young and vibrant you know what you have to offer the world but as you age or get sick you know longer have that same “worth”. Pastor John said “You don’t know your value, if nobody takes you seriously.” This really just resonated with me and I thought about Matt and how his body doesn’t do what it once did. John also compared it to a sports hero that everyone is cheering for - while they are winning- but when he starts to lose the cheering stops, sometimes even the boo-ing begins.  I told Matt I wanted him to know how much he is worth to me! Even though he can’t do the things he once did, he’s still here for a reason and I don’t know why God gave him this journey but He did and we need to learn from it and if even one person reading this blog gets something from it, then it’s all been worthwhile. 
He said “I know, Kell, I know.” I’m always here cheering for you Matt and TEAM O is ready to walk for you- raise awareness about MS and maybe just maybe someday they will find a cause and a cure!

Join US for the Walk! May 7th - Sign up HERE

You don’t have to buy a shirt but if you’d like to, you can do that HERE

Finally if you haven’t joined our Facebook Group…..Please do! Click HERE to do that.
Team O. is having a “Coffee Hour” at church on Sunday March 20, following worship at Congregational UCC - Worship at 10, Coffee Hour following (Around 11 a.m.)  Matt will be there for some real live chatter!

I can’t thank you all enough for the support, the comments and the prayers.

Sunday, February 28, 2016


This week Matt and I talked about a lot of different things.

Accepting this disease has been difficult for him. He said he was 23 when they first suspected he had MS and how he wishes he had paid more attention to what the doctors said then. But he said “I was young and thought I was invincible.”  When Matt was 16 he had a really bad concussion from playing football and it wasn’t until He and Cindy had infertility issues that he saw an endocrinologist. The doctors think that the concussion caused his pituitary gland "to snap." With the help of the doctors, obviously they fixed the infertility problems! He thinks it (the concussion)all played a part in his illness, and damage to his brain. He said the disease didn’t really start to hit him until he was 47. (He’s 53 now) I asked him what he misses most about what he could do before and he said “Walk”, “I really miss that."  He said it’s so hard for him to go places and “get around” and “I have to go to the bathroom a lot and knowing where a restroom is”…." sometimes it’s just easier to stay home”. 
He told me again of how quickly the disease can change things and how “the reality just hits you.” 
The struggle is real. “Learn what you can, while you can” he told me, because "you don’t always have the time you think you will. “ 
We talked about how young our dad was when he passed, he was 55. I asked Matt about his Faith and if he believed that God was still there for him and he said “Oh Yeah”. 
He said he’s not ready to meet God yet, but he knows his own death is inevitable. 
Matt said he’s so grateful for his large family, because we look out for one another and having a big family is “really cool.”  Family history is so important and he’s thankful for our sister Dorene who traces those family roots and documents things. “That’s why it’s important to listen to older people, because they’ve been there." He said “we just don’t think to ask questions.” We think there will always be time, but there will not always be time.  It’s hard to believe we are becoming those older people now, leaving our legacy to our children.  After our mom died, I found where she had started her own autobiography and hearing her memories in her own words, was a gift that she left us - but how much better it would have been to have those conversations with her. We talked about our mother and he said how he wishes he could have “just one more day to talk to her”, and how much he loved her and missed her and that we grew up in “great times.”
That is why Matt likes this blog, to talk and remember and hopefully impart some knowledge and wisdom to his children.  “I’ve been in their shoes, I know exactly what they are going through.”  He also said that he would “never tell them anything to hurt them, I really just want to help.”  

We talked about things like technology, the technology we’ve seen change in our lifetime….think of what our parents saw! Matt remember his first cell phone was so big, in a bag and he thought he was “so cool”.  Remember the VCR - you know those old VHS Tapes? Yeah, we remember the first VCR we had and how in AWE our dad was. “Oh man”, Matt said… “He didn’t even know how to use it.”  Remember the old TV Antenna? Matt talked about how dad got that so he could get better reception to watch sports on TV. (Hmmm….guess THAT runs in the family after all) Heck, I remember when we got cable and had a remote…before that Matt and Todd would yell for me to come and change the channel, even if I wasn’t in the living room! (See Cindy, that remote thing goes way back….)  
When we are young, we think we’ll always be young, but life has a way of happening and we age and with that comes all of the things this game of life throws at you.  Matt’s big curveball in life has been MS, and “MS SUCKS” he said. “I love diet pepsi, but now I can’t even open the can and I spill it all over, it’s just so frustrating.” He reiterated that it’s so important to do your exercises and how he wished he had done more when he was younger. 

You can’t dwell on the past and what was, you have to deal with the here and now and he knows that.  He’s accepted he is where he is in life, in the progression of his disease and he just wants to tell his story and thoughts. As long as Matt has a story to tell, I will listen and share.  I’ve always looked up to my big brother and I always will! 

Matt enjoys all of the comments very much! He also is super excited about the MS Walk that is coming up on May 7.  We have over 20 people signed up for “Team O”! If you can join us that day please do! Sign up HERE.  If you can’t walk and want to donate to help find a cure for this disease…every little bit helps! 

Our Facebook Group also gives a place to leave a message that we can read to Matt as some people had trouble commenting on the blog. Click Here to Join. 

We are also hosting a coffee hour at church on March 20 after worship service and Matt will be there for a real live “Chat with Matt”!  March is MS awareness month and “Team O” will be on hand to serve donuts, coffee and conversation! Congregational UCC in Castalia, OH. Worship at 10 a.m., Coffee Hour following (Around 11 a.m.)

Saturday, February 20, 2016

Thank you for being a friend…..

This week Matt wanted to take some time to thank people for their support and encouragement.
This blog has really meant a lot to him and the comments are so encouraging!!

He told me he really wanted to thank Ford Motor Company and the UAW for all they did for him.
The support through the process of medically retiring, and “just keeping everything straight."
He enjoyed his career at Ford very much. Matt is a journeyman plumber/pipefitter.  When the disease got to the point he could no longer work, he received a lot of support from his coworkers and management an he is truly grateful!

He also wanted to thank all the medical professionals, Dr. Kuns locally and Dr. Boissey at the Cleveland Clinic Mellen Center. He said “She’s a peach” and he would like for me to meet her some day. (I would like that too!)  He really has enjoys his therapists from Firelands also and told me “They are all pretty cool.” This week while he was having therapy he called me and put his therapist Aleta on the phone so I could tell her how to get to the blog.  (Did I mention how proud he is of this???) He said Courtney and Michelle are pretty cool too, and he reminded me again “Do your exercises!”

Matt said he can’t say enough how much his family means to him. He said he could never do it without their support. His kids are starting to fly the coop so there is only Julia at home now with him and Cindy but he appreciates ALL they all do for him.

He looks forward to visits and dinner with his sisters and he likes catching up with his brothers on the phone and hearing about Paul’s latest visits around the country.  (Promoting his books.)

Matt said he loves to talk to people and he’d love to hear from anyone if they’d like to stop and visit you can leave a message here or leave a message for Cindy or Kellie.  (email Matt said he’d love to talk to anyone else with MS that may be going through the same thing (or similar)!  He just wants people to know what he’s been through!

He is also looking forward to the MS Walk and excited to hear about people joining Team O!
You can do that HERE.   Just click “Join Team O” and if you don’t want to fundraise, (you can over ride the monetary amount to $0) it is NOT mandatory. We want to raise awareness!  

Don’t forget about our Facebook Group …. just click “Join Group”- we read comments to him and he calls me to see if there is “anything new”!

We will have some more blogs coming up and I personally want to thank everyone for the support.  It absolutely brightens his day and to be honest it’s been great for me to do something for my brother who has ALWAYS been there for me.  If you have a story about Matt O. from when you were either in school, work, or just knew each other….please feel free to share!

Saturday, February 13, 2016

In the blink of an eye….

Let me start by inviting everyone to join TEAM O in the fight to cure MS!
We have a team formed and are walking in the MS Walk on Saturday May 7th, in Sandusky, Ohio.
Join, walk with us, or donate to find a cure! (No amount is too small!) 
Click HERE to learn more 

You don’t have to, but if you’d like to order a shirt you can do so HERE

Even a portion of the t-shirt sales go to MS research.

Last link….If you want to follow A Chat with Matt on Facebook, we have a group formed HERE
Just click “Join Group” and we will add you!

Now on to the blog…..

Matt wanted to talk about how fast things change….in the blink of an eye….
I asked him what he meant by that and he said he thinks about the last MS Walk we did, he was walking then.  It has been almost 5 years since we did that walk.  
Matt appreciates your support, whether it is in person or in thought. 

Pictured below is Team O. in 2011 when we walked!

“I was walking then, but now I'm practically bed-ridden, I want people to know how quickly things can change.” 
He said “I do my exercises now, but I wish I would have done more back then.”
He said “I can’t do much of anything any more.” He went on to say he knows he’s not the man he used to be, but he sure wants to be.
Matt said the more he thinks about it, it gets depressing so he tries not to dwell on it.
Time passes and things change, and he doesn’t know what the future holds but he doesn’t want anyone (medical professionals) to sugar coat it, he wants to know what will happen to him. He said he wants to be prepared and he wants his family to be prepared.

I found this quote and it is pretty accurate to what Matt O. is feeling right now.

Life changes fast. Life changes in the instant. You sit down to dinner and life as you know it ends."― Joan Didion

It’s not easy living with MS, it is different for everyone. Matt doesn’t want your sympathy, he wants your support, your friendship, your empathy. He wants you to know that he didn’t ask for this and more than anything he’d like to get up tomorrow morning and go to work, driving his own truck and not relying on anyone to get him anything.  He is grateful for his family for being there for him. He knows it’s not easy on them either. 

Matt said "Thank you" to everyone that reads and comments.  He truly truly loves hearing from you all! 

“When you stand and share your story in an empowering way, your story will heal you and your story will heal somebody else.” – Iyanla Vanzant

Writing this blog has been something that I look forward to doing and it makes my heart feel good when Matt calls and asks when we’re going to talk about the next one!  He tells me what he wants to talk about, although he said “You can say whatever you want”….this is his time to share his thoughts! 

Until next time…..

Friday, February 5, 2016

Things you don’t think about when you’re young and healthy…..

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. 

Sunday, January 31, 2016

Living with MS

Let me just get this out of the way. MS (Multiple Sclerosis) stinks!
This blog is for my brother Matt O. who has MS.
He said he wants to write a book, I told him I didn’t think I could write a book but a blog, I could certainly do that.  So between my sisters and I, this weekend we chatted with Matt and took some notes to share Matt’s voice- because he still has that, even if he can’t write it down for you.

A little background, Matt is my older brother.  We come from a family of six. In order:
Dorene, Paul, Robin, Todd, Matt and Kellie (That’s me).  Our father passed away in 1983 of lung cancer and our mother passed away in 2010 from pancreatic cancer. (Cancer also, stinks!)
Matt is married to Cindy for 32 years, and they have four children, Katie (married to Ryan), Joey, Andrew and Julia and with not just one, but two grandchildren on the way.

Matt has been living with MS for some time, I don’t remember exactly when he was diagnosed, I know my mom was still alive and I know they suspected it years before but was never diagnosed.
His first symptoms were his failing vision. I remember the day he couldn’t get his drivers license renewed, it was on his birthday and my mom called to tell me.  He cried. I remember going to see him that day.  He still worked for a time after that, his buddy picked him up for work.
Work became harder and harder as the vision and his balance deteriorated.  He medically retired from Ford. He is a pipe fitter.  (And one of the hardest workers I ever did know)
It took him three times to receive disability benefits although he can’t walk without assistance and now is mostly in a wheelchair and he can’t see well enough to really do anything.  He isn’t completely blind, but by the legal definition, blind.

Matt gets really frustrated with his illness and this week was especially hard.  I don’t know that any “thing” made it worse, he said the “illness is just catching up with me”.
He said he feels useless and sometimes wishes he just wasn’t here.  That’s hard for a lot of us to hear.
He just wants to contribute, but he doesn’t feel like he does.  He knows that we all have our lives and jobs and kids, etc….etc… etc… “You have a life, I get that”, he told me. And while he fights this illness my life, your life, it goes on…we keep moving forward a day at a time but for Matt, he’s stuck in neutral. He can’t go anywhere (without help), he can’t read if you send him a card, he can’t write because his dexterity has deteriorated to the point where he even needs help to eat.  He said it’s embarrassing to drop things all the time and sometimes it’s easier not to eat.
He said he still has a brain, and he just wants to talk. So we listened.

Matt said he wants people to know he is not lazy. "I really just CAN’T Do what I used to do."
(I remember once he told me he felt like a total failure, as if he asked for this….)
But he knows it’s not his fault, it’s not anyone’s fault, but he is still frustrated and tired.

Matt loves to talk to older people, because he said “They have done it all and they have something to contribute” and “I just like to listen”.  He remembers things from yesteryears, that even I don’t remember. He remembers people, even if he doesn’t always remember faces, he remembers names.

This disease is hard and it affects everyone differently and even though to look at Matt O. you think he looks ok….he’s not. You can’t see what MS does to a person like you can see what happens to someone with a physical injury or bruises, but he is bruised on the inside and it’s hard to explain.
He knows he doesn’t always say the right things, but his brain still works.
And so does his voice and Matt O…. I can listen and tell your story.