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Monday, June 1, 2015

Stu's Views and MS News Presents: An insightful and very honest interview with musician David Osmond, on life, family, career and living with Multiple Sclerosis (MS)

An insightful and very honest interview with musician David Osmond, on life, family, career and living with MS.




May 28, 2015:

Stuart: David, thank you for speaking with us and all you do. Before we begin, I want you to know that both Jill and I both have MS as do many of our board members.

David: And how are you feeling Stuart?

Stuart: I am feeling great, doing many programs, I forget I even have MS! How are you feeling?

David: Good Stuart, You look great!

Stuart : So while we are speaking about our MS , tell me what you felt, prior to being diagnosed, what were your first symptoms of MS, what do you remember prior to being diagnosed?

David: It initially started with eye sight and shortly after that, pain, this burning pain started in my toes and started to move up my whole body, but the eye sight was the very first. In fact I was golfing with my uncle, and the ball was right in front of me, and I couldn’t even see it. It was like static television, it was like I had stared at the sun too long.  I just remember it (the ball) was right in front of me and I kept asking him where it was and he was like, “it’s right there”!

David continues: And then it was a few weeks later on Christmas Eve 2005, I did a show that night and when I went home, I took my shoes off and it was about 2 in the morning, and I turned to Valerie , my wife, my then girlfriend and I remember telling her, I said, “something is wrong”. It was like my feet were being crushed by a steamroller. I had this massive pain that I couldn’t quite explain. It was almost like a Charley horse, like when your foot falls asleep, it was like this combination that wouldn’t go away. I thought, ya know what, I am so tired , I hadn’t had any sleep, I am  going to ride this out. And the next few months that pain started traveling up to my legs and moved all the way up to my chest, and then I started tripping and falling and went into a wheelchair shortly after. And the eye sight challenge that I had was more consistent, almost all the time. And the last thing I was thinking was that it was MS, believe it or not! Still.

Stuart: Do you think it was because of your Dad?

David: My Dad didn’t have any symptoms like this! He has a different form of MS, I have relapsing, he has primary progressive, but he didn’t have any pain. He didn’t have any cognitive challenges, or any issues with his eye sight either. It was strictly his right side, so I just figured it was lack of movement, the fact that I had all these other things, I didn’t even consider it (MS). In fact I thought it was mechanical, I thought I had pinched nerves, I went to a chiropractor, and was doing exercises to help with pinched nerves. I was barking up the wrong tree!

Stuart: Was the pain that you had constant? Do you still live with that pain today?

David: The pain was constant, I still live with the pain, but not to the degree of what it was.

Stuart: With all of these symptoms what led you to a diagnosis?

David: After being in a wheelchair for several months, and after many tests, so many things came back negative, when I finally went  to have the lumbar puncture, the spinal tap, the MRI and all those things,  they came back and said, I remember being there with the radiologist, and him going through the film for the first time.  I could see stuff and I didn’t know what I was looking at, but I knew something was there. He was looking at them, and I could see his face and he looks over slowly me, and he goes. “son, you’ve been through the war”. He said, “it is all over, you have it in your brain, through the spine, there are lesions and it looks like it’s MS.”

Stuart: How old were you at that time?

David: I was 25 when it all began, and 26 diagnosed.

Stuart: And how old are you now?

David: 35

Stuart: How has MS affected your family? What goes on at home these days, what kind of assistance do you receive at home?  Do you need assistance?

David: Thank God I am able to function and do things for myself again, because during that first time, it was pre-engagement, my now wife was taking care of me. If I was alone in a room and I had to go to the restroom, I had to literally fall on the floor and drag myself, or manipulate my legs while holding on to things . And to be able to function now on my own is amazing. I still remember what that feels like, to not be able to do anything.  I do not take a single step for granted ever. I am able to function extremely well. Often my closest friends will say, Oh my gosh, David I totally forgot that you have MS, because the fact that I am doing so well is remarkable. I know that I am so blessed.

Having bounced back this far, and even though I still deal with stuff, I still have crushing pain, it’s not quite as strong as it was, I am having it wright now! It feels like I am being pressed and it is numb. My eyesight is fantastic is great! My hand is moving again, my voice is back, I’m able to do my music.

My bladder is that of a 98 year old guy! (laughs) it is what is, so I learned to pace myself, if I go onstage for an hour and a half, I better not be drinking too much water, even my stamina, to be able to push myself, if I’m even cleaning the garage, or  I’m doing yard work at  home, I can tell. Or if I’m trying to do sports, which I’m not as good as I used to be, I can tell when my body starts to, not shut down, but just it fatigues quickly and if I push sometime too far, I start to look funny walking, I start to look like robocop, it becomes mechanical, because all of a sudden I have 200 lb. weights on my legs. It is shutting down, so if I am on stage, and I start to feel bad, I learn to pace my show, I may sit down with a guitar for a song or two and get back up and them I am good to go for awhile. So I am learning to deal with what I have.

Stuart: When you are on stage, is the Adrenalin so high that you are really not feeling any symptoms?  I know you talk about your leg pain now, but when you are on stage and you are preforming, do you still feel it?

David: Yes, I do. My balance can be off. I have to be very careful as far as where stairs are, where the edge of the stage is, because if I trip and fall, and I have before, I play it off pretty good, but I have had to learn where my parameters are and not go past that, for safety sake.

And you asked how life at home was: Life at home is fantastic. I’m able to play with my kids. They don’t quite understand what it is, they don’t of course understand the science they are so young, 6 and 4, two girls, and then we have our newborn who’s 2 ½ weeks!

Stuart: Congratulations!

David: Thank you, we got our boy! They know that MS is there, we even have some books about MS, and without fail every single night when we have our prayers, my daughter Safron, says, “ and please bless Daddy, and help him with his MS” every single time.

Stuart: Could you please tell us what you find most challenging every day?

David: I would love to do things the way I used to, ya know, I don’t remember what it’s like to do a layup in basketball. I used to be very athletic, and to be able to do simple things that I used to do, It’s just not there anymore. Things like the bladder, that certainly something I have to deal with every second, throughout the night, my sleep patterns aren’t very good because of that. So I learn to deal with that.

Stuart : So moderation is a key issue, that one should know about.

David: Ya, I think so. Trying to balance, and find the activities that work for me now that bring me that same joy. Like, I love to golf, I will do that, and snowboard as much as I can, Not the way that I used to , ya know, I have to stop two or three times down he hill, and just sit down sometimes. And then I say, OK , I’m back , let’s go. But I’m finding as I push myself to that limit , I think I’m improving as I try to get as much core strength. Finding those exercise programs that work for me.

John Schneider is a buddy of mine, and we started doing some basic yoga stuff last year and I’m just not keeping up at all, and it’s embarrassing and humiliating, because I know what I have been through, and he does too. But I think there is this stubbornness in me, I’m a competitor , I want to achieve things and when I can’t , THAT gets frustrating.

Even when it’s the simplest little things, but it humbles me as well. And I have to just accept it and realize, this is what I can do, and what I can do I am going to be the best at that. So even if it is just stretches, little tiny exercises, not the way I used to work out, but as I find that core strength it does help my balance. It helps me do my performances, to be able to be at home and help my wife out. Every day is kind of a new discovery to discover what you can still do.

Then I also find times when I just need to shut it if off and sit, and I will go to my wife and say, “I have to lay down”, I am so sorry, and fatigue will just hit me and I will just crash and it will happen every now again, so you gave to find that time for yourself.

Stuart: What does your average work day look like, how many hours a day?

David: It depends on what project I am working on. Sometimes I do not sleep as much, if I am working with different artists in the studio, and if I have a deadline I have to get done. So I find times when I say, this week, or this next 3 days, I’m going to shut the phone off , I’m not going to go online, and I’m just going to be Daddy. In fact during this pregnancy every time I was home, I was Mr. Mom, I was running the carpool, taking my kids to school, going to the soccer games.

Stuart: That is enough to make anyone fatigued! How do you differentiate between normal fatigue from being a dad and MS fatigue?

David: That’s a good question, I can certainly recognize the MS fatigue, this weight of tiredness, it does not hit me all the time , I usually can go and go , but every now and again, I need to take a break, even a 5 minute power nap. I grew up on the road, I’ve learned to sleep In the most bizarre places, I can bounce back pretty fast.

Stuart: A 12 minute power nap in the afternoons is what I need, once a month, if it happens.

David: I feel like this community from the non-profits like yourself Stuart, to the Pharma, everyone, there is a heart to this unlike anything I have ever seen, and I feel like we drive each other and feed off of each other and it certainly motivates me to keep going and give back as much as I can, because this community has given to me something that I can never repay. Having relapsing MS is one of the best things that has ever happened to me. It’s bizarre to say that , I never  thought I would say that in the beginning, but it has totally changed my perspective on life, I can still sing , write and play, and thank God, and I will do that as long as I can and to the best of my abilities.

Stuart : Exactly

David: I feel like teaming up with my friends here at Novartis is the least I can do, and try to encourage other people, and that’s why I am writing the song, "I Can Do This". And sharing my story, I have learned that it blesses my life , because I meet people like you Stuart, people who share their stories and I learn what people are dealing with and I realize quickly the cards that I’m dealt; man, I’m gonna play this hand the best that I can. We all have stuff MS or not; but I realize that I can do this, I mean it sounds like a catch phrase, but it’s my Mantra.



Jill: You grew up as a child of a Dad with MS, What is it like to have a Dad with MS, what are my kids feeling?

David: That’s is a good question. My Dad was diagnosed in the mid to late 80’s I was probably about 7. But I didn’t see it, he was fine, he was still going on stage to perform and it took years of a slow progression when he finally had to leave the stage. And I was a teenager when he left the stage.  I think because it was a slow progression for him and I saw him always as this invincible guy, this fighter, that never got down, never got depressed, and never got sad, to date I have never once seen my Dad complain about having MS. He put the bar so high, it’s been amazing to watch him and to have a Dad like him has been such a blessing.

As a child, though I do remember as a kid I remember saying prayers, (emotional) asking God if you can take this from my Dad and give it to me. I forgot that I even did that until I got my diagnosis, and I am actually really grateful that I share this with my Dad because I feel him in very ,  I take and now I can recognize if he is having a fatigue moment. Or if he is struggling, we share that bond, that maybe my brothers (I have 7 brothers) might not fully understand. It is a connection that is so much deeper now as a father and son, it’s just amazing. I can just look at home a say (to him), “you’re feeling it , are you ok? And he will say, “I’m good”, it’s hard to explain. My Dad always did it was such grace and strength that he inspired me and he is one of my greatest heroes for that.

Stuart: - Thank You for speaking with us David - 
        and YES, YOU CAN do This!



We want to thank David Osmond and Novartis for making this interview possible.

Interview hosted by Stuart Schlossman and Jill Molberger

Written by Jennifer Falk, MSW, CPHM 05.31.15



Our Voice In Song – A Campaign To Raise Awareness About Relapsing MS


Music artist, singer and songwriter David Osmond was diagnosed with relapsing multiple sclerosis (MS) at the age of 26. Since that time, David has become a vocal advocate for the MS community, sharing his experiences and his music, to help raise awareness of this condition. Read David's story at http://www.ourvoiceinsong.com/info/david-osmond.jsp







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