Troy’s Healthful Journey with MS and Parkinson’s Disease

Background and Family

00:58 — Where Troy Is From

“I was born and raised in Bend, Oregon, and I left to go to college in 1980, when the world was melting down, when interest rates were an unbelievable 16%.

“I was trained in forestry, and then I traveled all around the United States. I was in Alaska, the Midwest, the East Coast, the Southeast part of the United States, running manufacturing facilities.

“And 17 years ago, I moved back to Bend, my hometown, with my wife, who I met on the East Coast, and became a financial advisor.

“The patriarch of our firm was my scoutmaster growing up, and I bought his firm, became a financial advisor, and I’ve been doing that for the last 17 years.

“I have three children, two girls and a boy, and I’m within 18 months of being an empty nester.”

01:52 — His Wife and Family Life

“We’re having to figure out. My wife’s been a stay-at-home mom for the hardest job in the world for the last 21 years, and she’s working through that right now.

“It’s easier said than done, that’s for sure.”

Symptoms and Early Warning Signs

02:30 — The First Noticeable Symptom

“It was July of 2014.

“One morning, I was making breakfast, and I went to stick my hand in a pool of eggs to scramble them up, and my hand wouldn’t move. Wouldn’t whip the eggs.

“My wife walked out about that time and said, ‘What’s wrong?’

“And I started to lie to her and tell her nothing was wrong, and she said, ‘Don’t you dare lie to me.’

“And I said, ‘My hand won’t work.’”

02:53 — Seeking Medical Help

“So I went to my general practitioner within a week and had X-rays and all that kind of stuff.

“He sat me down and said, ‘Well, I’m not sure what it is. I don’t think it’s neuroskeletal [possibly referring to a nerve or musculoskeletal problem], and I’m going to send you to a neurologist.’

“And I said, ‘Well, what could it be?’

“He said, ‘It could be a pinched nerve, it could be a brain tumor, it could be MS, it could be Parkinson’s disease. I don’t know. We’ll find out.’

“And he started to walk out of the room, and I said, ‘Whoa, whoa, whoa. You can’t drop that on me and just walk out of the room.’

“He was a great man, Dr. Vagas [name to verify], and he came back in and sat down for half an hour.

“We talked about what the process was going to be to find out, and that everything was going to be okay.”

Diagnosis — Multiple Sclerosis

03:39 — Neurological Testing

“So I went to a neurologist in early July of 2014 and went through a series of tests.

“Did a couple, three MRIs, did a lumbar puncture [spinal tap], all those kinds of things.”

03:52 — Christmas Eve Diagnosis

“Then on Christmas Eve of 2014, I got on my bicycle at seven o’clock in the morning and rode the road five miles on a frosty morning to my neurologist to get my diagnosis.

“And I remember vividly riding on the way there thinking, ‘Am I gonna tell my family before Christmas or after Christmas that I got a brain tumor and I’m gonna die?’

“And so I went to the doctor, and he told me I had MS. I didn’t have a brain tumor, which was a great relief, and that there were medications.

“Then we started down the path of finding out medications, and he put me on Tecfidera [a disease-modifying medication for MS], which seemed to help and make things better.”

04:32 — Living with MS After Diagnosis

“I went along for a couple, three years with having some impairment in my left hand and my dexterity, but nothing got progressively worse as far as balance and other things.”

Worsening Symptoms and a Second Diagnosis

04:55 — Symptoms Progressing Around 2018

“And then about three years in, so 2018, I started having problems with balance, with my gait.

“I had brain fog. My hand got worse and worse, and I started dragging my leg and those kinds of things.

“I couldn’t drive, dress myself, and we went on vacation to Phoenix, Arizona.”

05:19 — A Frightening Experience on Vacation

“At the end of our vacation, one day I couldn’t get under the covers. I couldn’t manipulate myself to get under the covers.

“And I freaked out and had anxiety and walked around all night, the hotel that we were in.

“And managed to get home and went to my neurologist.”

05:37 — Trying Different Medications

“He said, ‘Well, let me try these drugs.’

“And he tried different drugs on me, and we went through that for a couple, three months, and I precipitously went downhill.

“I got to the point where I couldn’t drive, I couldn’t dress myself, I couldn’t function.

“I got severely depressed, which I had never had in my life before, and got bad anxiety.”

06:02 — Reaching a Breaking Point

“One day my wife and I went to my existing neurologist, and I told him, ‘I’m depressed, and I don’t think about hurting myself, but I think about if this is all there is to life, and this is how I’m going to be, is it really worth living? What should I do?’

“And he gave me the 800 number to the county health department suicide line.

“That made my wife very mad, and she grabbed my hand and dragged me out and took me to another neurologist.

“We sat in the lobby for four hours until they could see us.”

06:33 — A New Neurologist Recognizes Parkinson’s

“I have a great neurologist now, who told me, she says, ‘I think you might have Parkinson’s disease too.’”

06:51 — Starting Parkinson’s Treatment

“And so we went through a diagnosis process of that.

“She put me on a great drug, which is the gold standard, called Sinemet [carbidopa/levodopa, a medication used to treat Parkinson’s symptoms].

“And I’ve been improving ever since, to the point where I water ski, I ride my bike, I snow ski, I walk six miles every day.

“I played 149 rounds of golf last year, and I’m much better.

“And so it’s not a death sentence. You just have to find the right way to treat your disease.”

Looking Back at Earlier Symptoms

07:45 — Symptoms Years Before Diagnosis

“Oh yeah, I look back and I see all kinds of symptoms that I had, some of them back in my early 30s, where I had a numb hand.

“My left hand again was numb, and I had a hard time holding the pen.

“You just figure it’s a pinched nerve. You’re 18 and bulletproof, and it’s nothing bad, and you ignore it.

“And it eventually went away.

“So I look back, I had many aha moments when I looked back and I said, ‘I understand what was going on.’”

MS Treatment and Insurance

08:26 — Experience with Tecfidera

“I’d had no side effects, none of the flushing or upset stomach problems that people have.

“It worked for about three years, and then my lesions in my brain from my MS became active again.

“So my doctor took me off Tecfidera and wanted to put me on Ocrevus [another MS disease-modifying treatment], but the insurance company didn’t want to do that.

“And so they put me on the generic Rituxan [rituximab, a medication sometimes used to treat MS], which has worked very well ever since.

“And I’ve had no activity in my lesions.”

09:04 — Accepting the Alternative Treatment

“I understand they wanted to try Rituxan, just sort of a generic version of it [Troy’s description of the alternative medication], and they wanted to try it first.

“And it worked, and so I’ve got no complaints or no bad will.”

Understanding the Difference Between MS and Parkinson’s

09:34 — Difficulty Separating Symptoms

“It’s all sort of a blur and meshed together.

“One day I asked my neurologist, I said, ‘Is that MS or is it Parkinson’s disease?’

“And she goes, ‘Well, that’s MS,’ and she starts rattling along, and she gets about halfway through and says, ‘Or I guess it could be Parkinson’s disease too.’

“And so sometimes I don’t know what symptoms [are from which disease], because I have a tremor in my left hand.

“And when I get amped up and my adrenaline gets going, I get talking like this, it gets to, I can make a great milkshake with my left hand.

“And so that’s a symptom that can be MS or it can be Parkinson’s disease.”

10:12 — Improvement with Parkinson’s Medication

“Because when she put me on carbidopa/levodopa, or Sinemet, I got better almost like that.

“And really pulled out and went from being in a very, very bad place, a very scary place.

“I look back in hindsight that I never, ever want to go to again if I don’t have to.

“To where I am today in a much better, joyful place.

“I look back and I think a lot of my symptoms were overridingly Parkinson’s disease, not the MS.

“And MS is a contributor, but not the major thing that affects me day in and day out.”

The Importance of Having an Advocate

11:23 — His Wife Advocating for His Care

“The most important part is you really have to be an advocate.

“And I have a great wife, and it can be a friend or somebody else, but she was my advocate when I was my weakest and I couldn’t defend myself and didn’t have the ability or the acumen to do so.

“I had somebody who was an advocate for me.

“She dragged me, and I mean, she cried in front of the receptionist. I can never tell whether they were crocodile tears or not.

“She cried in front of the receptionist because the receptionist said they couldn’t see me today.

“She dragged me to the new neurologist, and she cried and got me to sit down, and we had to wait four hours, but we got in.

“So I learned you have to have somebody in your corner helping you out sometime.”

Working with Multiple Healthcare Professionals

13:06 — Seeing Different Specialists

“Well, you get to see lots of people when you get a neurological disease, and you get two of them, degenerative neurological diseases.

“I’ve seen, of course, my GP. You see your neurologist, you see a motion disorder specialist [likely movement disorder specialist], you see a urologist, you get to see a psychologist.

“I saw a physical therapist. I saw an occupational therapist.

“And my father was in his mid-80s when I got diagnosed, and I was taking him to his doctor’s appointments and me to my doctor’s appointments.

“It took all day, three days a week, to get to all the doctors’ appointments and get things done.

“So you see lots of clinicians that help you with different things.”

13:55 — The Role of Physical Therapy

“There was a big help. My physical therapist really helped me.

“She was my miracle worker, helping me along with my neurologist and saying, ‘You can overcome this, and with drugs you can get your balance back, but you have to work.’

“And I’ve always been an active person, but I have to consciously walk six miles a day every day, or go play golf, or lift weights and do those kinds of things.

“And so I saw a PT [physical therapist] for that too, to help me get in it.

“Because lifting a 10-pound weight and you got a shaky hand, you have to make sure you do it right so you don’t hurt something else.

“So I’ve seen lots of those [specialists], and they all play a very important part.”

14:40 — Coordinating Medical Care

“But the important part for me is making sure that everything funnels back to at least one person.

“And for me, that’s been my neurologist. I make sure everything gets funneled back to her.

“And I check with her, and she’s great at emailing and making sure that she got the blood test from my GP, or my GP’s asking for the right blood test so we don’t have to do things twice.

“Talking to everybody, and so I’ve had lots of help and lots of people to see.”

Physical Therapy and Recovery

15:18 — Starting Physical Therapy at His Lowest Point

“Well, I went to my PT the first time in my lowest ebb, and I couldn’t even hardly get up out of a chair.

“And she helped me find ways.

“First, she emphasized how important it was to keep strengthening your core.

“There’s ways to get up that you’re cheating and you’re not using the muscles you should be using.

“And she pointed that out, and that’s not easy to hear when you’re at the bottom and you just want to be better.

“And you don’t want to hear somebody telling you you’re going to have to work hard to get better.

“It’s just like, ‘Man, give me a pill and make me better.’”

15:55 — Rebuilding His Strength and Mobility

“But she pulled me through and took me through and started with very remedial [basic exercises], putting 10 pennies on the floor and stepping over them, and then bending down and picking them up.

“To where I was running and riding my bike again, and skiing and water skiing and those kinds of things.

“So it’s not for the weak of heart.

“A good PT person will challenge you and make you want to yell expletives at them from time to time.

“And they can be very frustrating, but it’s very, very important because it helps you to use the right muscles and not create other injuries by trying to cheat.”

16:44 — The Time Commitment of Physical Therapy

“PT has been, when I first started, it was three times a week, an hour a day.

“And then I was just in the PT office, and then you’re doing your other stuff, your homework as I would call it.

“You’re gonna have to do that for a couple, three hours a day too.

“To now where I see my PT about once every six months for an assessment of where I’m at.”

17:09 — Establishing a Baseline to Track His Progress

“It was important to me, and it was important to my neurologist too when we talked about it.

“We sort of built a baseline because I wanted to know if I was getting worse.

“Because when I really took that deep plunge off, I wasn’t honest with myself or my partners at work or with my wife and my family that I was getting worse.

“I just wanted to ignore it.

“So I wanted a baseline, so I got a good baseline in place.

“We go check that every six months.

“She makes sure that I’m doing the things that I need to do.”

Exercise and Managing Fatigue

17:40 — Making Exercise a Daily Priority

“And then my time commitment is, I exercise. I have to exercise a couple, three hours every day.

“Because one of the most important things for MS and for Parkinson’s disease in particular, because there’s really no drug to slow the symptoms, you’re just treating the symptoms, exercise has been found to be the number one thing.

“And so I make sure I’m committed.

“Every two or three hours, part of my job every day is I get up and I go for a walk, or I play golf, or I ride my bike, or I go skiing, or whatever it is I do.”

18:33 — Dealing with Fatigue

“I haven’t had much fatigue lately, knock on wood.

“When I did have problems with that, it was, you just had to physically pick yourself up and go do your things.

“And it’s very, very hard. It takes everything inside your core to tell you to get yourself up when you’d rather assume the fetal position and suck your thumb and take a nap.

“And so when I had fatigue, I have found that the more I exercise, the less I have problems with fatigue and brain fog, which are both common in MS and Parkinson’s disease.”

Advice for Others Living with MS and Parkinson’s

19:49 — Coping with a New Diagnosis

“The first thing I’d say is when you get a diagnosis, it’s very easy to go to a very dark place.

“You’re going to the worst thing you’ve ever seen on TV or in the movies, which the movies dramatize these kinds of things.

“And like I tell people all the time, MS is not a death sentence.

“Parkinson’s disease, you don’t die of Parkinson’s disease, you die with Parkinson’s, and it’s not a death sentence either.

“And it’ll throw you all kinds of curveballs, things that, I mean, it’s very frustrating some days when I can’t button my shirt and it takes me 20 minutes to get ready in the morning where it used to take me five.

“And I consciously have to think, if we’re getting ready to go to church, I have to get dressed a half an hour before everybody else.

“And things like that.

“But it’s not a death sentence.”

20:37 — Treatments That Can Improve Quality of Life

“There’s drugs. Medicine is important in both sides.

“As far as slowing MS and actually stopping the progression of MS, they have drugs for that. That’s what Rituxan and Tecfidera is.

“And on the PD [Parkinson’s disease] side, we can treat the symptoms with Sinemet.

“And there’s deep brain stimulation [a surgical treatment for certain Parkinson’s symptoms] that goes with it.

“And so there’s lots of things that can help and improve your quality of life.

“So don’t freak out, and just try to take the system day by day.”

Making Peace with His Diagnoses

21:12 — Seeing His Diseases as Both Friend and Enemy

“And the other important part is that I’ve learned Parkinson’s disease and MS has become my friend.

“It’s my enemy because I can’t do things.

“I used to be a very, very good skier, and I could ski anything in the world.

“Today I have to stay on this groomed run, and I have to go slower than I used to, and that hurts my ego, not any part of my body.

“And so you have to deal with that.

“But it’s my enemy from that side, but on the other side it’s my friend.

“I know it’s there. It’s going to be with me for the rest of my life.

“And it has helped me understand the joys and the grace that I’ve had in my life.

“I took lots of things for granted when I was healthy all the time.”

22:01 — Gratitude and Perspective

“I wouldn’t wish Parkinson’s disease or MS on anything, but I have friends who have ALS [amyotrophic lateral sclerosis] who have pancreatic cancer.

“And I wouldn’t change places with them any day.

“If I had to pick the disease, I’d take the ones I did because I still get to live my life.

“And there’s still lots of things I can do. Sometimes I just have to do them differently.

“So they’re not a death sentence, but you have to make friends with your disease and know what your capabilities are.”

22:32 — Knowing His Limits

“Because sometimes I try to push myself too far, and if I find I do things that I used to do, that I could fall and hurt myself and break my arm or break my leg or crack my head open.

“I can make life a lot harder on my family, and I don’t need to do that.

“So I consciously have to think, ‘Am I doing this because of my ego, or am I doing it where I could hurt myself and not do it and make things harder for my family?’”

Family, Humor, and Communication

23:10 — Talking Openly with His Children

“What I would tell people too is when you communicate with your family, my kids were just getting in high school or junior high when I got both MS and Parkinson’s disease.

“We have a wonderful relationship, each one of my children.

“My wife’s been a rock, and all of it just doesn’t, it is what it is, and we’re going to live through it.

“And we’re going to have a good life and do our things that we do.

“For my kids, it’s funny. Each one of them has been different.”

23:40 — His Oldest Daughter’s Sense of Humor

“My oldest has the same warped sense of humor that I do.

“And so she bought me a, because of my shake, she bought me a Chihuahua T-shirt for Christmas.

“Says, ‘I have Parkinson’s disease.’

“And so we make jokes about it and laugh about it all the time.”

23:54 — How His Other Children Respond

“My middle daughter has been my caretaker, who wants to make sure Dad’s okay and everything’s all done.

“But we have great communication.

“My teenage son, he’s just like, ‘Well, that’s Dad, and now I can whoop him earlier than I thought I was going to be able to whoop him.’

“So we’ll go from there.”

24:10 — Helping Others Feel Comfortable Asking Questions

“But we communicate it, and you get people that’ll ask you.

“The biggest thing is you get people to find out you have Parkinson’s disease, and as I started to semi-retire, I get more and more that people come up to you and go, ‘How you doing?’

“And sometimes you have to ask, ‘You mean how am I doing, or how am I doing?’

“Some people want to hear a lot about it, but they’re afraid to ask about it.

“And so if you can be as open as you can, it’ll make the journey much easier and make people comfortable.

“Because part of your job becomes, right, wrong or indifferent, part of my job becomes making other people comfortable when they see me shaking and they don’t know why I’m shaking.”

Closing Reflection

25:35 — Troy’s Final Words

“I’d love to stay in touch too, and anything I can do to help you, let me know.

“And this has been a great experience for me.”