My Experience With Young Onset Parkinson’s
I have rewritten the beginning of this post many times and have changed the title more times that I care to admit. As you see, I settled for a simple non-controversial title. To be completely honest, I feel that I have been procrastinating with this post for many weeks. “Is it just a busy time?” I hear you ask. Well, yes it is busy, but life is always busy. It is not because I am busy; it is because this post is personal. It is about Parkinson’s and my experience with it being diagnosed with it in my 40’s. It is also because many people that read this post that know me are unaware that I have Parkinson’s. I worry so about my tone of this post. Is it too serious or too light hearted? The disorder is not a walk in the park, but it is not so bad considering you probably can’t die from it, and secondly that it is a slow progressing disorder.
Symptoms of Parkinson’s
Parkinson’s is classified as a movement disorder that is caused by lack of enough dopamine in the brain. This is due to the cells needing to produce it dying. It is said that by the time you are diagnosed with this condition that 70% of these cells have died. Although it is a movement disorder there are many other non-movement issues such as with sleep, depression, anxiety and fatigue. No one knows for sure why people get Parkinson’s. All Parkinson’s diagnosis is based upon having a few, or all of the following main symptoms: rigidity, stiffness, tremor, movement issues such as slowness of movement and balance issues. You may be as shocked to find out that 40% of those diagnosed do not have a tremor.
How many younger people does Parkinson’s actually affect?
According to some experts, 15 % or higher of the Parkinson’s population are under 50. I think that may be more people than you might have guessed. I don’t think on first glance you would be able to tell that I have Parkinson’s. I do not exhibit the tremors and other characteristics that you are used to seeing. This is because all Parkinson’s people are individuals and the disorder affects us differently. Also keep in mind that when you see or read about someone with it you may be seeing someone in late stages of the disorder. Sometimes what you are seeing, such as shaking may not be actual Parkinson’s, but the side effect of the medication called dyskinesia. This is quite a common problem in the young.
How Parkinson’s affects my body
I am one of the 40% of the Parkinson’s population that has no tremor. My major symptoms are difficulty with movement, stiffness and rigidity. Before I was diagnosed I was having problems such as not being able to turn over in bed. Other problems I had were freezing at doorways, not being able to walk at a normal pace, and dragging one foot as I walked. I was extremely tired. How tired? I could work for one hour, but then had to rest for another three hours. Doing everyday things was exhausting. I noticed that it was getting harder to hold a pen and write. My handwriting was getting smaller and smaller. I experience pain daily, but many with Parkinson’s do not.
How Parkinson’s is diagnosed?
There is no test for the disorder at this time. You go through a lot of other tests to rule out other diseases and disorders. It could take years for you to get a diagnosis. I think this is especially true if you are younger and don’t fit the typical Parkinson’s image.
Technically it is a slow progressing, chronic disorder. You can’t die from it, unless you fall or die from complications. It is often thought of in the medical community as the best chronic disease you can get because it is so slow progressing and manageable. Even as I write that last sentence I want to snap “Yea, that is because you don’t have it”, but then again, I don’t want to give the impression it is worse than it really is. It is a very livable disorder. There is no cure, but there are things you can do as I am learning to manage it. I have to admit though that managing your Parkinson’s is like a full time job and you have to make it a priority.
Are their different symptoms for young people than older people?
Actually no, it is often the same symptoms than an older person gets. But with a younger person you are in the busy time of your life building careers and raising kids. So getting a diagnosis of Parkinson’s can change your life for sure. I have learnt that many of the young onset population keep their diagnosis secret from their employers, friends and even family. Symptoms may be hidden by medication. The medication does not take away the disorder. The medication manages the symptoms for a specific amount of time. When you start out, you could be taking 3 pills a day 5 hours apart. As your Parkinson’s progresses, that interval that the pills works shortens so you could need to take a pill once an hour, or another medication may be added to prolong the effect of the original drug. Of course any medication changes are something you would discuss with your medical physician. A lot of times there are side effects. Not everyone with Parkinson’s is on medication. Medication is only necessary when the symptoms are negatively affecting your work, and/or life.
How young onset Parkinson’s affects my life
I have to think a lot now that I have Parkinson’s. Mostly I have to think how to move, over and over in my head because it is not automatically done. If I don’t think how to move, I don’t move at all. If I get a coffee in a coffee shop with a friend it involves a lot more thinking. I have to think how to hold the cup because it feels like I am holding a brick, how to carry it to the table without spilling it, how to walk to the table, how to not look stiff when holding the cup because I notice I am holding my cup in a unnatural way, how to not bump into another table because I have to think to make my body not move as slow as it wants to, how to concentrate on all this and listen to what someone is saying at the same time, and how to get up from my seat because now that I have been sitting for 15 minutes I am stiff again. Whew, all this thinking about everyday things is exhausting, although I have somewhat gotten used to it. No wonder most people with Parkinson’s have fatigue.
What I do to help my Parkinson’s
The good news is that there does seem to be a solution to most of my problems right now, but it involves thinking up new ways to do everyday things and I have had to significantly change my life. I know that you are thinking that having Parkinson’s seems like a major negative that dramatically changes your life. I thought this at first, but now I think of it as also having a positive side. I have been faced with major decisions such as what to focus on, what is a priority and what to let go. You will quickly know who your friends are and who are not really there for you. You will be faced with the challenge of maintaining a positive attitude and taking away stressors at an alarming rate.
I am lucky that with my training as a registered Ayurveda Health Counselor and Practitioner, I can use my knowledge to develop a routine to go along with my western meds and protocols. I will write more about my routine in my next post “How Ayurveda Helps My Parkinson’s”.
And on that positive note, I will end this post.
For more information on Parkinson’s:
American Parkinson Disease Association
National Parkinson Association
Michael J Fox Foundation