Sunday, March 12, 2017

Thrill of Victory - Agony of Defeat


I know some people are too young to remember ABC “Wide World of Sports” and they had the montage “The Thrill of Victory and the Agony of Defeat” and they showed this ski jump fall by Vinko Bogataj 
https://www.youtube.com/watch?v=x7frGJf77AA (Shown in the first 30 seconds) 

This is how Pastor John started his sermon today.  The reason for the fall…"Midway down the inrun for his jump, Bogataj realised that the conditions had made the ramp too fast. He attempted to lower his center of gravity and stop his jump, but instead lost his balance completely and rocketed out of control off the end of the inrun, tumbling and flipping wildly, and crashing through a light retaining fence near a crowd of spectators before coming to a halt. “ (wikipedia)

Pastor John talked about how you react to a changes in your path and he had a really great sermon today and I just couldn’t help but think of Matt, the entire time. 

If Vikno Bogataj hadn’t changed his path, he likely would have been killed doing that jump if he hadn’t adjusted his path,  instead he received a concussion and a broken ankle.  We have to “adjust our sails” so to speak to the changing winds in our lives and do something differently, not just lay down and die.  Things don’t always go as planned and we have to learn to adjust to the roadblocks in life.   MS changed Matt’s path but his life is not over, just life as he once knew it.   He once was a hard working plumber/pipefitter at Ford Motor Co, active in his community, father to four and husband to Cindy.  And now he’s pretty much confined to a wheel chair.  (He can transfer from chair to bed and back to chair)  His dexterity has deteriorated a lot and has a hard time gripping things (including a fork or spoon) and he tries his best to maintain what is left of his independence.  It is hard and you can’t help but wonder “why”?  Matt doesn’t want sympathy, he just wants everyone to know he can’t help it.  March is MS Awareness month and while he told me “I”m very well aware” and he wants others to know his journey through MS. 

I told him I thought that God brought him to where he is for a reason.  He is there to be a light to others and he truly enjoys the other residents.  He enjoys getting to know them and was recently voted President of Resident council, although we hear the vote was really close and there may be a re-vote. (Voter Fraud? ha ha-- Matt O for President! Making Bellevue Care Center Great Again!)  (I am not sure all the details of this, but would certainly campaign for my brother if I could)  Matt enjoys very much selling candy bars to raise money for a monthly pizza party!  He loves his pizza and diet pepsi! 

He told me he loves getting to know the other residents and he even can tell you things about the caregivers - like one of the activity girls played basketball in college.  He still has a love for people that doesn’t end and he truly enjoys getting to know people. 
He has been tired lately and even a little depressed.  He’s adjusted the best he can to a “new normal”.  He misses being an active part of society.  

My sister, Robin and I are part of a group called “IRUN4” where you are paired with a disabled person and dedicate your runs (or walks) to,  we each have a buddy!  I decided to sign up Matt for a buddy, and he was just paired with Brandon and we are getting to know Brandon, he’s already sent us pictures of a couple of runs and Matt does his “laps” around the nursing home. It may be just the inspiration Matt needs to get out there and keep moving!  

We haven’t updated in a while and Matt didn’t have a lot to say today but Pastor John’s sermon really impacted me And I couldn’t wait share that story with him and felt it was a good time for an update.  

It’s hard some days when you can’t cheer Matt up and there is no magic “thing” to say or do.  This quote pretty much sums it up:   When your heart is breaking for someone who is broken, but your words can’t reach them and your love can’t save them, ask the angels to go where you cannot. To whisper into their heart what their ears can’t hear: “We will not give up on you. Don’t give up on yourself.” — Sandra Kring

If you get a chance, stop by and see him! He’s at Bellevue Care Center in Bellevue, Room 107, it’s on the corner of Flatrock and Gardner Roads just south of Route 20. (If you turn south by Family Video it’s the next intersection) 

If you haven’t signed up for the MS Walk yet it is May 6th in Sandusky. 
Here is the link to our team - come and walk with us or donate or both! (Donations not required) All money goes to the MS Society. 
Walk for Matt O




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, kelliekenniston@yahoo.com 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.