This Is What Young Onset PD Can Look Like

Not so many years ago, I was taking 27 pills a day to curb my Parkinson’s symptoms. That number didn’t include the supplements that I was advised to take along with my medication. You take some of the pills to mask the symptoms and you take the others to combat the symptoms caused by the pills that are aiding in making life a bit ‘easier’. That is some 700+ pills a month. Over 700 pills to help you stop shaking so much, to keep your mood somewhat elevated, to ease the physical pain that no one else knows is there, for aiding in the reduction of rigidity in your muscles, and more. This is what PD (Parkinson’s disease) can look like.

My symptoms, when going through my medical history with my Movement Disorder Specialist (EVERY PD patient needs one of these, if at all possible) over the years, he discovered that my journey with PD began way back in high school. Yes, that time of playing in the band at Friday night football games and Thursday night basketball games and wondering why I felt like I was trembling inside while sitting on the bleachers or marching on the field or studying for exams or whenever they (the tremors) felt like making themselves known.

Up to 44% of those with PD have experienced internal tremors. This is also what YOPD can look like. In my early 20’s the tremors continued and I started having gut troubles. I didn’t think much of it, but looking back on my medical history my doctor felt confident tthat PD was playing a quiet role way back when.

Fiona MacDonald of Science Alert says, “Researchers have noticed that people with Parkinson’s often report…digestive problems, up to 10 years before they notice tremors. There’s also evidence that people with Parkinson’s disease have different gut bacteria to other healthy adults.” This is also what PD can look like – but you can’t see it.

I began reading through my journals (kept from way back when) and began to see my symptoms actually did begin in high school. But they were subtle. They were unpronounced, minimal, silent, unassuming. There was some rigidity. Internal tremors. Gut problems. Not much but enough to put a connection to. This is what Young Onset Parkinson’s Disease can feel like.

When I was 32, I was misdiagnosed with Lupus and medicated with pills that didn’t make a difference. This is not uncommon.

I visited my regular doctor for twitching in my fingers and shaking in my hands, the right one most predominantly. I was 44 by then. I knew something was wrong. She sent me to a neurologist. I didn’t like his diagnosis nor his bedside manner so I found a Movement Disorder Specialist (MDS). His diagnosis was the same but his bedside manner much better than the neurologist, so I stayed with him.

For the sake of pity, I often don’t let people know how I’m really feeling. People treat you different when they know you have a disease. I don’t necessarily want to be treated different. My heart is still beating. I am living. I have too many weeds yet to pull, too many roses still to prune. I have grandchildren to watch grow and (hopefully!) more to be held. I have things to paint, to fix, and to make. I have birthday cakes to bake, popsicles to slurp, and summer days made for catching ladybugs. I don’t have time to wallow in a sea of sorrow over a disease I have but would rather not. But – since I do – I recognize that there are times (and they are increasing in number) when it’s okay to be treated different and need help. Really okay, because…

that’s what PD can look like.

I Don’t Feel Like It

I told a friend last night that I feel disconnected. Disconnected from the PD ‘loop’, ‘circle’, whatever. If you’re involved with a Facebook PD ‘group’, you know that there is a growing force of people trying to make a difference in finding a cure for Parkinson’s disease. They are trying to get people to step out of their comfort zones (for some) and get involved in fund-raising and bringing awareness to this debilitating disease.

However, I feel disconnected. Or perhaps a better word for it is… apathetic. Not intentionally. Not purposefully. Not willingly. I just do. And then I read this in the newest issue of the Northwest Parkinson’s Disease Foundation newsletter:

Barchester, UK – Apathy among people with Parkinson’s disease is a sign that the condition is getting worse, claims a new scientific study.

A new scientific study suggests that apathy shown by a person with Parkinson’s disease is a sign that the condition is worsening.

Research published in the Journal of Neurology, Neurosurgery and Psychiatry suggest that apathy can be caused by changes in the brain resulting from the condition, Parkinson’s UK reports.

The Norwegian study followed a group of 79 people diagnosed with Parkinson’s disease over a four-year period.

Commenting on the findings, Parkinson’s UK’s director of research Dr Kieron Breen said: “This is an important study that helps increase our knowledge and understanding of one of the common non-movement related symptoms of Parkinson’s.”

 

He went on to say that the charity’s own research had found apathy to be a common symptom, while understanding why people with the condition may be apathetic may help carers.

One in every 500 people in the UK has Parkinson’s disease, equating to around 120,000 people living with the condition, according to Parkinson’s UK.

So, perhaps my apathy is grounded. I surely hope not. Not now, not ever. I want to run this race in life well. I want to get to the end and know I did what I could with the opportunities I had and not look back with regrets. I want to be an encouragement to others and not a source of discouragement. But – sometimes we get too busy comparing our walk with others along the way. We feel inadequate if we aren’t doing what others are doing or prodding us to do. And that’s okay. Sometimes it’s not our turn to run. Sometimes it’s okay to walk and take your time. If we were all running at once, people would be getting shoved off the trail, knocked down and trampled on.

Maybe you’re discouraged today because you feel like you’re not doing enough to find a cure for PD or Alzheimer’s or Breast Cancer Research or MS or whatever it is you’re fighting. Maybe it’s your turn to walk. Maybe it’s time to take a rest on the bench and give/donate to someone who is more able to run this time around. Whatever it is – do something, no matter how small – even writing a note of encouragement to someone on the front lines right now, fighting for a cure. Just don’t let apathy take over and keep you on the bench.

 

Team Parkinson’s – The Captains, The Players, The Benchsitters, and The Fans

Whether you have had Parkinson’s disease for awhile, have been newly diagnosed, have been diagnosed with Young Onset Parkinson’s disease, etc., sooner or later you’re going to want to talk to someone about it who really understands – someone who’s been there already on the journey with this Little Monster.
 
A support group can be your lifeline because it is like a team. If you think about it, the best teams are those that work together and are not made up of players who seek to go solo and feel they can do it all on their own. Like the old adage, “There’s no “I” in TEAM.”
Every team has a coach. Someone who knows the game well. Someone who has played the game before. Maybe even already coached other teams in the past. Someone who can show you the best moves. Show you areas you can improve.
Every team has a captain – a peer who leads, can keep things going, encourage the team to do their best and play to win even though they themselves are playing the same game, win or lose. They have a winning attitude. They play to win.
And in order for the team to perform well, each player needs to be ‘in the game’. Just because you’re part of the team in number, doesn’t necessarily mean you’re ‘part of the team’. Bench sitters don’t contribute a whole lot in terms of playing the game, but they can. Instead of sitting in a puddle of pity or with an attitude of anger, they can be cheering on the others who are able to play hard this time around. They can have a cup of cold water ready for the next player who finds himself needing to sit on the bench a while. They can support and encourage their teams mates making their role invaluable.
 
Of course teams are made up of the players themselves. Some seem to play in every meet, game, match and the like. They appear “better” but  they are not more valuable for we all contribute in some way, in some capacity for the win – the cure.
Players are ‘equal’. The quarterback can appear to be the star but there’s no way he’s going to make it to the end zone without the support and assistance of the rest of his team. A pitcher doesn’t play alone in the game of baseball. Even sports that appear to be played ‘solo’ – tennis, marathons, boxing, etc – are all part of a team of some sort.
Players are constantly working together, fighting together for that win. Maybe one player will be able to run the length of the court today and even make. That winning basket, but tomorrow they may be benched due to an ailment or injury.
If you’re a player on Team PD, still able to move freely without many constraints, don’t forget about the bench sitters who long to be in the game, but find themselves ‘benched’ for now. They may have a lousy attitude, or have a positive one. Either way, they are still part of this team  and in great need of some encouraging words. 
 
And remember, for every team, there are fans. They come out, sit through the tough plays and cheer on the sidelines. They are there in the rain, the cold and the biting wind. No matter the weather, they still show up for ‘their’ team. On Team PD, fans can be friends, family, caregivers.

Whatever part of the PD team you’re in, you’re not playing in this lifelong game alone. Get into a support group, find a ‘coach’, a ‘captain’, someone who’s been there and can encourage you in your game. Remember… You are not alone.