What are two things that most people know about Parkinson's?
1. People shake
2. Older people get it
Well both of those statements are both true & false at the same time. If you don't have Parkinson's Disease or don't know someone with PD those are likely the only things you know or assume about the disease. I know, I myself was guilty of those assumptions & that limited knowledge before being diagnosed.
The truth of the matter is that many people with Parkinson's only have mild tremors or perhaps if more severe they are the least of their troubles. In my own case I do have tremors on my right side, it started in my right dominant arm and eventually moved to my right leg as well. I have noticed over time a very small shake starting to happen on occasion on my left hand as well. However, 8 times out of 10 if you see me I will in fact be very 'still'. A combination of levodopa doing it's job and that my tremors are not the worst of my PD problems. Of course I do have some days that are worse than others where someone will notice it, but thankfully they are few and far between (so far). Most likely the times they are bad, I have just had physical activity, not slept well, am stressed, nervous or upset about something. Sadly PD does not allow us to typically hide stress like we once may have been able to do.
As for the second point that older people get it. Well that is true, in fact most people diagnosed with PD are over the age of 60. However there are approximately 10-15% of PD diagnosis which occur in individuals under the age of 40 and 20% diagnosed under the age of 50. This puts us into the category they refer to as Young Onset Parkinson's.
So if tremors are the least of some PD patients issues and someone under the age of 40 or 50 is diagnosed what does PD look like to them? Well, Parkinson's is often referred to like a snowflake, no two cases are alike. Everyone experiences a variety of symptoms often at various stages of the disease. In my case the most difficult part is my gait, stiffness and slowness to get moving. Combined with difficulty with fine motor skills in my dominant hand. My right arm also doesn't swing for the most part when I walk, it essentially appears lifeless. Levodopa is a savior for me in those areas and throughout the day provided I take my meds on time I could easily be around people without anyone ever knowing I had it if I did not tell them. In the mornings however I am at my worst when I've gone all night without medication and am waiting for that first dose to kick in. Mornings are hard, plain and simple.
In addition to those symptoms there are many non motor symptoms that come with Parkinson's Disease. Many times in fact that appear often years before a diagnosis is made as they are perceived to be entirely unrelated issues. If I look back at my life I can identify with symptoms I had of PD back as far as high school which has been 20 years this summer since graduation. Although the various things (including occasional mild shaking in my right hand) that I experienced that far back and in years since I would often chalk off to being something minor and ignore it, or at the very least would never have associated it with a degenerative neurological disease. Some of the non motor symptoms patients can experience are drooling, changes in taste & smell, bladder & bowel dysfunction, insomnia, excessive sweating or a feeling of getting hot flashes, chocking & swallowing difficulties, depression and double vision are just to name a few. I experience almost all of those issues and some of which for many, many years now. However there always seemed to be a logical explanation for them. Hot flashes and sweating at night started after my first child, it was assumed I was starting to go into pre menopause. I have a bladder condition which I have been getting monthly treatments for almost 4 years now by the urologist, it was never assumed to be anything caused by something else. I started to have a reduced sense of smell which is gradually getting worse as time goes on, I basically just ignored it assuming others around me simply had 'better sniffers' than I! You see it's easy to mistake some of these things for something unrelated to PD.
It's been almost a year now since I first heard the scary 6 words "I think you have Parkinson's Disease" and on that day I knew nothing other than old people get it and they shake. I was confused, scared & in shock. Since that day I am much more of an expert with a much greater understanding of PD. Many people with PD experience social withdrawl a combination of embarrassment, fear, denial and depression among other reasons. Others do not understand what they are going through, often do not know how to accept it themselves or how to help or deal with the person who has it which adds to the patients potential for withdrawing. Especially in younger cases where most times you hear they tried to hide the disease from coworkers, friends & even family for as long as they possibly could and therefore stayed out of public or social settings as much as they were able. Then on the other hand there are others who choose to educate themselves and make an effort everyday to not hide in shame and continue on living their life as best they can with PD. Neither road is easy.
I have chosen to accept it and although I have my days of being withdrawn and feeling angry or sorry for myself I do my best to keep them at a minimum and instead 'try' to do something positive with what life has dealt me. I work hard to try and spread awareness that Parkinson's Disease is NOT just an old person's disease and it's NOT only about 'shaking'. I have vowed that I will get involved in the PD community and advocate for people particularly those of us who are young onset and have a very long life ahead of us despite the challenges we may experience and continue to struggle with as time goes on. Sadly when you are first diagnosed there is no handbook given to you by the specialists. No list of places you can turn to for advice or help. No pamphlet to tell you what is going to happen to you and at what stages or what to do about it. We simply are told we have it, trust in our movement disorder neurologists treatment plans and sent on our way. And yet there are great organizations out there that can help us get educated on treatments, trials, how to cope and beyond. There are support groups where you can be in a room or on a conference call with other 'like' people who understand your struggles. There are conferences and webinars and great things that come with technology. However we are left to find all these on our own. If you end up being the person who socially withdraws you can never find these great resources. YOU have to be your own advocate, YOU have to seek these things out and even though they can be scary there is valuable information and knowledge in them.
These are the various reasons why I choose to not be quiet about having Parkinson's Disease. I did not choose to have this and I refuse to be 'ashamed' that I do. There is nothing I did or didn't do to cause me to have this disease. There is no reason why I should be embarrassed of it, or try and hide my symptoms on a bad day so that someone else near me won't feel uncomfortable. I'm not a medical "mess" or "mystery" I have Parkinson's Disease, it's ok you can say it! I may not be thrilled by it but pretending it doesn't exist won't help or change the reality of it. If you think you're 'uncomfortable', well trying being the person with the disease when your really uncomfortable with pain, or stiff and unable to move, or moving too much.
I choose to simply "Shake It Off", do my best to not be bothered by it or others reactions (or lack there of) to my Young Onset Parkinson's Disease!
I choose to be loud, to share information and spread awareness that PD is not just an 'old' person's disease and not only about tremors!
I choose to be an advocate for others suffering with it and although I'm not entirely sure what my role in advocating will look like I will figure it out as time goes on.
I choose to try and get people 'out of the PD closet' & not hide, be embarrassed or ashamed about it!
I choose to try and get people 'out of the PD closet' & not hide, be embarrassed or ashamed about it!
I choose to work hard to live well with Parkinson's!
