Page created by: Dr. David Peter

April 2013 - The first letter

Dear friends,
This letter was started over a year ago. This is the beginning, or at least a recollection of the past year. Forgive me if I ramble, but memories are never captured instantly. They grow and change over time.

1 Peter 5:7 - Cast all your anxiety on him because he cares for you

So it was a little over a year ago. April of 2013 when things changed. My life changed April 24, 2013. It’s hard sometimes really to stop and think about what happened or if it was really that important. People that you work with get to know your habits and get to know when things are good when things are bad and sometimes, if you got a really good working relationship with them they’ll feel comfortable asking you that question, “Is everything all right?”

Sometimes I would just be setting somewhere and it would start with a small twitch or my hand or arm would start shaking. You really don’t think twice about this. It is just something that you think is normal. After all, I am in good health, and I can tough it out through anything, right?

Well, after several people had come up to me and asked if I was okay, I really wasn’t able to give them a decent answer. I made an appointment to see my general practitioner. I thought this would be just something small, or nothing at all. As that appointment came to a close I could sense something was wrong. She was concerned and wanted me to see a specialist. She referred me to a neurologist for consult. Now, I am worried. A neurologist? I think she said Parkinson’s … you really don’t remember a lot when you’re hearing words like Parkinson’s.

The neurologist watched me walk, tie my shoes, button, unbutton my shirt, draw a clock face WITH numbers (thankfully I do wear a watch with a REAL face, and not a digital one). After several appointments with the neurologist I was sent for some tests. Blood work was normal. MRI with and without contrast was the test. When I was laying on the table and the technician came to me and could tell that I was disturbed, she asked if there was anything she could do. I ask if there was some music I could listen to while the procedure was going. She said what kind of music would you like to listen to? I asked if she could pick up WBGL and she said yes. You never know the power of Christian radio until you really need it. The MRI itself was probably an hour or so in length. I did a lot of praying during that hour. Praying for peace, for comfort … for strength.

Philippians 4:13 - I can do everything through him who gives me strength

After an hour, I wanted to know something, anything. When the MRI was over the technician said that their doctor or neurologist would give me the results. So imagine this, you just sat through an hour-long test and know that the test is going to be important for the diagnosis. You also know it’s going to be a while before the doctor or the neurologist get back with you. And now the questions begin.

It was a week later when I was called back to the Neurologist’s office. She had me do some more handwriting tests (my handwriting has NEVER been really good, so I didn’t know what she would find). “David, you’re exhibiting some of the symptoms of Early Onset Parkinson’s Disease.” “Parkinson’s?” That’s what she said. I had NO idea what that meant to me!

I was afraid … more of the unknown. But I’ve been so blessed to have a Neurologist who takes all of the time that I need. Together we have AGGRESSIVELY dealt with Parkinson’s. I’ve learned how to be a PWP (Person with Parkinson’s) … focused on staying POSITIVE … yeah, some days are good and some are not that good … I know I now get tired in the afternoon, and it’s good to nap … even if those naps are 2-4 hours long … I’m keeping notes to talk with my neurologist about each appointment. One day at a time.

I had come home after my diagnosis. I really felt alone. I started walking. And I called a friend while I was walking … just to have SOMEONE to listen … That was the day I really started walking … walking to be in control of my movements, walking to MOVE somewhere. What else was I supposed to do?

After a long walk, I started thinking about Mom and Dad. I needed to talk with them. That evening I Skyped with my parents. I was so glad that we had Skype … something to be said about not only HEARING them, but SEEING them as well. That was hard, but seeing their faces made the discussion much easier.

I talked to my little brother. He’s completed 5 or 6 Ironman Triathlons, a 2.4-mile swim, a 112-mile bicycle ride and a marathon 26.2-mile run, raced in that order and without a break. He’s encouraged me from the very beginning … and continues to encourage me.

Isaiah 40:3 - But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.

Bill Withers wrote and recorded a song years ago - in 1972. The title of the song reminds me that I am not alone, "LEAN ON ME". I'd like to share some of the lyrics that continued to strengthen and comfort me:
Sometimes in our lives
We all have pain, we all have sorrow
But if we are wise
We know that there's always tomorrow
Lean on me when you're not strong
And I'll be your friend, I'll help you carry on
For it won't be long
'Til I'm gonna need somebody to lean on

Family has been my strength. No matter what, they’re there.
Friends provide comfort and encouragement.
Faith is my bedrock.

And so, I started walking … at first it was just a mile. I wasn’t in the best of shape. I’ve walked over 650 919 miles since diagnosis. Fastest time per mile so far has been 14:48 12:15. Longest distance was 6.5 7.3 miles. Now, I’ll walk at lunch (around 2.25 miles in 40 minutes). And, some days I’ll take a long walk … restful and relaxing, really!

I didn’t stop at walking. I bought a stationary recumbent bicycle in February of this year. I’ve logged over 530 1,300 miles. Fastest time per mile so far has been 13:46. Longest distance has been 18 miles.

The physical activity is important to me and for me. As Parkinson’s progresses, my muscle tone and muscle mass will start to deteriorate. Oh, and there are the falls … I’ve had none yet, a couple of close calls, but none … yet. Balance is important. Broken bones are to be avoided.

I got a letter from my insurance company in October. It started off “Dear David Peter, We understand that living with serious health problems can be hard.” Had to re-read that first sentence a lot to make sure I understood. Needless to say, I was upset, I was mad. Who were they to say that? Then, about a week later, I got a telephone call from the insurance company … I probably wasn’t the most pleasant … but then she explained to me that this is another part of the coverage. They really want to make sure that I understand what Parkinson’s is and what it means to me. Since then, they’ve called once a month … a nurse who has worked withParkinson’s patients … a pharmacist who studied pharmacology and Parkinson’s … a nutritionist … people just calling to say, “So, David, how are things this month?” That telephone call has helped me work through this one month at a time.

I shared my diagnosis with a few people at work … those that would see me every day. I figured that they needed to know, and that way they would begin to understand what Parkinson’s and David look like.
I’ve started sharing my new “normal” with folks. For me, Parkinson’s is not WHO I am, but it may determine WHAT I am able to do. My new normal now involves 3 different medications taken at fairly regular times. My new normal means that sleep is a premium … sometimes I can get a full 7-8 hours of uninterrupted sleep, sometimes sleep just doesn’t come for me. So, I’m up … early … VERY EARLY. You’d be surprised what you can get done when your day starts 3 hours before everyone else’s day!

I’ve switched medications (one of the joys of Parkinson’s is trying to find the right blend of medicines). Now I’m taking Azilect once a day, Carbidopa-Levadopa 3 times a day, and a NeuPro patch daily. I’ve learned a lot about medicine. UPDATE: Now will be taking the Carbidopa-Levadopa 4 times a day. That SHOULD make my day better. Taking about 1,000 mg of D3 daily for bones. And 6 mg of Melatonin to help me fall asleep.
I’m still working. Had someone ask me “Are you still working?” Well, of course I am. What else would I do? I still drive. Still live where I’ve lived since I moved here to Terre Haute. I don’t wear bow ties as much … some days it’s just hard to tie the tie. I don’t worry about the things I used to worry about … your priorities definitely change with Parkinson’s, trust me!

Let’s see … I’m getting closer to finishing up my PhD. Research is done and after 120 pages, 23,751 words, 935 paragraphs, 3 appendices, 5 tables, and 121 references my dissertation is FINISHED! Working through edits, then form and style, defending the dissertation, and that’s about it. Dissertation is now in the hands of the reviewers. UPDATE: Dissertation was successfully defended on August 1, 2014. Now, just waiting on the final approvals.

James 1:2-4 - Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.

I had wondered what God had in mind for me. I don’t worry so much about “things” … I know God will take care of the big things, and He’ll let me do some of the smaller things. I’ve definitely become MORE patient … I am thankful for each day. I’ll laugh a bit more (sometimes at myself), take time to talk with people, and to really listen to them.

One of the other “issues” with Parkinson’s is a soft voice. Not that I’ve been known as a great public speaker, my voice does soften as the day goes on. I figure this is just God’s way of letting me think before I speak.
Fast forward to one year later … one year with Parkinson’s

1 Thessalonians 5:18 CEB - Give thanks in every situation because this is God’s will for you in Christ Jesus.

In April of 2014, I’ve gone in for my one year follow-up. It's hard to believe but it HAS been a year. Sometimes a very, very VERY long year. Neurologist commented that we’ll need to readjust the medication again … hey, at LEAST we’ve got something to adjust, right? She was pleased with my balance … ok, so I’m still a LITTLE bit wobbly, but it’s better than it was.

I had asked folks at work several questions: first, are my tremors better or worse than a year ago … overall, they said better, but they could definitely tell when I was in a high stress day … tremors were more noticeable; second, how is my balance? couple commented that they had seen me almost fall, ALMOST … they could tell when I’d come back from my lunchtime walk … I was definitely better; third, how are my voice and handwriting … morning, good … as the day progressed, worse … soft-spoken enough some afternoons that I have to repeat myself.

My tremors are always there with me! It’s hard somedays to set for long periods of time … around two hours or so and I get really fidgety. It’s hard to set still for long! My body is moving, and telling me to get up and move! Although I’m aware of my tremors, I’m not embarrassed by them … that’s just me now. I'm coming to grips with what Parkinson's means to me. To be honest, I still don't know!

Some days are good, and some are not as good. I hope and pray that I will overcome Parkinson’s … the dictionary defines overcome as a verb … ACTIVE … “to gain the victory, win, conquer” Mandisa released a song “Overcomer” this past year. I’d like to share some of the lyrics with you:
You're an overcomer
Stay in the fight ‘til the final round
You're not going under
‘Cause God is holding you right now
You might be down for a moment
Feeling like it's hopeless
That's when He reminds You
That you're an overcomer
You're an overcomer

I will overcome Parkinson’s. Each day is a gift from God. It’s up to us to be thankful and accept the gift. Don’t sweat the big stuff … God will take care of that … don’t worry about the little stuff … it will all work out in the end.

So, what have I learned this past year?

Some days are a struggle … between the tremors and being tired … between my soft voice and unsteady hands … some days are a struggle. But some days are good … my tremors are not as prominent or evident … I am rested and ready … I speak with confident voice and strong, steady hands. One day at a time is how I deal with things, one day at a time.

Trust in God … believe His word … thank Him for EVERYTHING … Family is my rock, my foundation … oh, smile a lot, and remember it’s alright to laugh and cry (just not at the same time for a long period of time). Friends. They’ll be there … in the grocery store, in the pharmacy line … it’s hard to hide from friends. Call an old friend just to say hello. Friends are the ones who can get me through the day … I’ll get a card every now and then … just a “thinking of you” card …and that makes the day good … Send a note to someone … just because. Say please, and thank you … it’s OK … but most of all, Celebrate life!

F. Scott Fitzgerald said once “Never confuse a single defeat with a final defeat.” This may just be a small, singular defeat … but it is NOT my final defeat. New opportunities arise each and every day.

Thank you all for this time. May God continue to richly bless you.

David