Allow me to introduce myself and the purpose in ‘Parkinson’s Journey’.

My name is Sherri and I am 47 years old and I have Parkinson’s disease. That sounds like I have just sat down for my first AA meeting, but I don’t have an addiction problem. I have a shaking problem. And a swallowing problem. And a sleeping problem. And a … well, you get the picture. I could call them problems and to be honest, they have been and can still be. But so can running out of gas fifteen minutes from home. As I learn to adjust and live with this disease that I once considered an intruder and a thief, I don’t see it as a problem anymore – well, at least not to the degree I use to – today anyhow. My Parkinson’s has become more of an opportunity and challenge for me to grow. With that said, here’s my story:

When I was 31, I sat in the chair in my ophthalmologist’s office for a regular eye exam. Stopping in the middle of the exam, he scooted his stool about a foot back and matter-of-factly asked, “Has anyone in your family ever had MS?” Needless to say, my heart sank. What was just a regular exam to see if my prescription needed to be adjusted because of headaches and burning sensations I was having in my right eye – this appointment had just become an opportunity to allow my heart to take a dive.

After I replied no, he then turned on the light and told me the optic nerve was hemorrhaging and what I was seeing when the burning sensation would occur was actually blood coming from the nerve itself. If I thought my heart had sank moments, it must not have hit the bottom, for I felt it drop a bit more at that statement. He immediately scheduled an MRI for the following morning, as he told me his concern was Multiple Sclerosis, a brain tumor or Rheumatoid Arthritis. It was then that I knew my heart hadn’t gone to the bottom, for at that prognosis I felt it finally make it’s complete decent as my prayers quickly ascended. At least I had options. I just wasn’t sure which of those three was the best one to prefer.

The tests were negative on the MRI and I was told to come back if I noticed any changes in any way. And, so I did – a year or so later, when my joints ached all the time, I was tired, slightly depressed and just didn’t feel ‘good’. It was then that, after a series of tests, they told me I had CNS Lupus. The kind that affects your central nervous system and can wreak havoc of all sorts, should it choose to do so (and it usually does).

It’s been over 15 years since that diagnosis was made. Since then, I have had another diagnosis, this one coming about almost two years ago, at the prompting of my regular doctor to see a neurologist. I had told her my hands were shaking all the time and that my right leg was beginning to do the same thing. Nothing major, I assured her, but enough that it bothered me. A little. Like when I typed, which I did all day as an administrative assistant at the church I worked at.

My doctor referred me to a neurologist for a nerve conduction test. At my visit and after telling the doctor the symptoms I was noticing, he asked me to hold out my hands in front of him. As they shook in front of him, he then asked me to get up and walk down the hall, had me stand in front of him with my back to him as he gave me a jolt and I not only thought that he was crazy, but I almost fell over.

He told me to go ahead and go back in the room and then hooked me up with wires and patches for the nerve test and as he was doing so, commented that he didn’t think I needed this test but he’d do it anyway. That was fine. I didn’t think I needed to be there, but I guess I’d stay anyway…

After he was finished he said he wanted to see me back in his office with my husband after he got the results back. In less than a week, I was diagnosed with Parkinson’s Disease.

We decided to go to a Movement Disorder Specialist about 30 minutes away. Two weeks later, we arrived at seven in the morning and promptly seen. Again, I was told to take the familiar walk down the hall. This apparently showed him whether the swinging movement of my arm had been affected and also whether I was dragging my foot or not. Both symptoms of which were noticeable to him, but had become a part of my life to me.

A new ‘normal’.

My right arm was not swinging and my right foot was indeed dragging. It all sounded like a new dance step to me and became part of the overload of information that was filling my head and I found myself beginning to shut everything out.

He then had me stand in front of him with my back to him and again… the jolt. This, he told me, showed him how well my balance was. It wasn’t well. I nearly fell over again.

Back in his office I sat down in a chair where he had me hold my hands out in front of him. They were shaking, a little more pronounced than usual. He asked me about my sleep patterns, which, I told him to my knowledge, I had none. I slept in the afternoons when I would get sleepy and had attributed it to being over tired from work.

He asked me about my sense of smell. I told him I had noticed that it wasn’t very good anymore. He asked me if I drooled a lot. ‘How does he know all of this?’ I thought to myself. Embarrassingly, I said ‘yes’ and wondered what that had to do with any of this. And, how could his list of questions be so accurate as to what was going on with my body?

Okay, well, he is a specialist.

Then he explained what it all meant and in layman’s terms put it in a way I could understand…

“Your brain is like an engine that needs oil and when an engine doesn’t get the oil it needs, it doesn’t run properly. Dopamine is a kind of oil your brain needs and your brain isn’t producing the amount it needs to run the way it was designed to run. This is called Parkinson’s disease and that is what you’ve got.”

I knew that. That’s’ what the other doctor had said. It just hadn’t seemed real to me until that very moment. Then he asked me if I ever felt depressed. Immediately I said no, but I did. That was one area I wasn’t willing to talk about unless I was sure I wouldn’t be labeled mentally unstable, as so many others who view depression to be. Besides, I could handle the depression on my own. I was just thankful I wasn’t going crazy. Thankful that all the things I was feeling and experiencing were actually a part of what was going on with my body and not my imagination. I wasn’t going crazy…

A month went by and I was now taking two pills three times a day. A month later I was up to three pills three times a day. Each doctor’s visit repeated the infamous list of questions concerning drool, sleepiness and more. My answers were given, an additional pill added to my routine and another appointment made.

Again, another month. Again, the list of questions… And then he asked me some new ones: Was I having trouble swallowing? How was my handwriting? Was my voice getting softer? My daughter was at this visit and he asked her what she was noticing.

Yes, I said, I was having trouble swallowing, sometimes. I wanted him to be sure it wasn’t all the time.

My daughter told him my handwriting seemed small and not so nice. I turned and looked at her and wondered why she hadn’t consulted me before giving that answer.

Yes, she said, ignoring my motherly look, my voice was getting softer. I made no comment. I gave no look. She was right. I was falling apart and this thing, this thief called Parkinson’s Disease was taking the best of me and I should just quit right now, face up to this mess, quit denying I have it (like some were so kindly saying to me), curl up in a chair (suggested by a friend) and wait for me to die.

I sat there, in front of my doctor, on my hands so they wouldn’t shake, and cried.

He reached around to his desk, grabbed a Kleenex, scooted his chair a foot from in front of me and handed me the tissue.

“Can I ask you a question?”, I asked him.

“Of course.”

“Do you think I’m in denial?”

He seemed shocked that I asked such a thing.

“Sherri, you wouldn’t be in my office right now if you were in denial. Why do you ask that?”

I told him that a few people in my life had thought I wasn’t facing the truth of this disease. The truth was, he told me, that I was facing it, every day, every moment, face to face. The truth was, I thought, I wasn’t willing to crawl into that chair and die, like they thought I should do since they now had somewhat labeled me as an invalid. Instead, I saw life as more precious, more valuable. And, much shorter.

Another pill was added to my routine, a new appointment made and I was on my way once again.

It’s been almost two years now. I am just beginning to see this disease as an opportunity to grow. I finally admitted that yes, I do get depressed. And then found out that depression can be one of the very first symptoms of Parkinson’s. My doctor admitted that he was just waiting for me to bring it up and realize I needed a little help in doing so. Now I take a regular small dose of an anti-depressant. And I notice when I forget to take it. So does my husband.

I quit my job about six months ago. While I can still move around, it made me very tired, I found myself tripping a lot and the fact is, I just can’t move the way I used to. Other people don’t notice all the changes, but a Parkinson’s patient does.

The other day I was feeling a little down and told my husband that I felt like an invalid. He looked at me with sympathy and said, “You’re so far from that.” Yes, I told him, but I’m far from where I used to be.

I know that I am not an invalid, but every once in a while the lies get the best of you. That is when I have to remember that this is an opportunity to grow. This is when I remember that this opportunity came to me through the hand of God and whatever He gives me, He gives, knowing I can handle it – only with Him – not alone. There have been times in my life when I have asked if He was sure I could handle what He had just placed in front of me. He was sure, even when I wasn’t.

And when I’m not sure, and even when I am, He is always there at my right side and He has promised that I won’t be shaken… or is that, shakin’?

This site exists to encourage others on a similar journey or to better understand those on this path. Join us often for updates, encouragement, whatever and feel free to leave a comment or email if you have something to share that would benefit someone else. Welcome!