Challenges, Plans, and Happiness

I am really not planning on making Young Onset Parkinson’s Disease the focus of this blog. I think I will occasionally write about it in order to raise awareness since it is pretty rare and also because I think my readers would relate to the challenge of it. All families have challenges. Challenges are things that are not in our plan. They demand attention, accommodation, and may even change our plans but they don’t have to define us. I used to think they were things that caused unhappiness but I have come to realize that challenges and happiness have very little to do with each other. And that is the challenge!

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What Parkinson’s Disease Feels like for Me

When I first started having my symptoms I was very scared it was something really bad. I never in a million years would have thought they were the symptoms of Parkinson’s Disease. When I googled the symptoms of PD I got these four things: tremor, stiffness, slowness, and balance problems. These four things describe what full on PD looks like but no where did I find a description of what if felt like or how it started. Many people who develop PD don’t feel much of anything but others do. It is a very individualized condition. It would have been helpful for me to read more detailed personal stories. So here is my contribution and to be perfectly clear I have Parkinsonism which is the symptoms of Parkinson’s Disease. I am responding well to Sinemet which is a pretty good indication I have it but there is no definitive test for PD except an autopsy and I’d like to wait a while before I have that!

Early symptoms

One morning in the fall of 2012 my lips kept getting stuck together. I’d move them but it kept happening. I even touched them to see if I had something sticky on them. The next day I asked my mother casually what it could be. The day after that I felt the strength drain from my limbs. I went to the emergency room. They did lots of blood tests and sent me home with Lorazepam. The next day it got much worse on my left side. It felt like my left arm and leg were moving under water. I also had the feeling of loss of circulation especially in my arm, as if I had a tourniquet around my upper arm. Over the next couple week I continued to have this left side weakness and a wild assortment of nerve sensations from numbness, hot and cold, pins and needles, tingling, nerve pain, and extreme muscle burn in my left forearm. I went to my PCP and she did more tests and referred me to a neurologist who did even more tests. I thought I might have Lyme Disease or MS. I was also afraid it might be ALS. Over the next couple months I continued to have these symptoms. I could no longer balance on my left foot. I began having trouble with things that required strength and coordination in my left hand like dishes, brushing my daughter’s hair, and typing. There were other symptoms too including muscle twitches all over, shakiness when standing or if I was nervous, and a vibration feeling inside my body (I often ask people if they can see and the answer is always no). I also started having difficulty talking, chewing, and swallowing (I started having to take breaks in the middle of chewing a single piece of meat from an extreme sensation of fatigue, swallowing became less complete, and I was having trouble getting through picture books, my voice would give out). My mouth symptoms were and are still the most troubling to me. And there was more! My movements became ratchety especially in my right arm and my eyes started taking up to ten seconds to focus from close to far or far to close. My eyes also started doing other funny things like if I look down they will wiggle back and forth a few times or sometimes I would have trouble seeing things that are moving. They would almost fade a little until they stop moving.

I should also mention that two months before this onslaught of symptoms started I had some unexplained anxiety. I also had a crazy bedbug scare when I was getting the sensation of bugs biting me all over. I was convinced we had bedbugs and even had my mother come over to help me check the mattresses.

Seven Years Prior

Apparently with Parkinson’s Disease there are usually precursor symptoms that happen many years before. Looking back I had some of these but I never put them together even though they happened around roughly the same time. My eyes started twitching all the time, constantly. It was bad enough that I saw doctors about it including my PCP, an othamologist, and a neurologist. They found nothing and I learned to live with it. I also developed a sore left shoulder and have had trouble sleeping on my left side since. And my legs started getting very wobbly when I would wait in lines.

Progression over the Last Year and a Half

My first neurologist didn’t know what it was. She said it would probably just go away. Great! I thought. But it didn’t. For a while things didn’t get much worse but over time other things started happening. I began having trouble getting out of chairs. If I sat for more than a half hour it was like my hips filled up with superglue and I couldn’t straighten out. I would have to walk funny for 10 or so paces until it loosened up. This symptom came on gradually and has gotten worse over time. Getting up is usually a slow and physically painful process. All over stiffness is another thing that has come on, slowly but it is getting worse over time too. It is most noticable in the morning when for a second I wonder if I played in the World Cup the day before because every muscle in my body aches. I have never been a really fast to react person but I do notice additional slowness like when I try and pay with exact change my fingers just won’t move fast enough. I also noticed if I wash my hands in cool water they almost become paralyzed (although I know cold makes movement slower for everyone). The other strange thing I will mention is my fear of being knocked over. I think some parents will relate to this. My six year old especially wants to run up to me to tackle/hug me when I pick him up from school of when he is just playing and because my reaction time is slowing down I have to remind him to be careful.

When I wake up in the morning I can feel the sensation of IT entering my body. It used to be kind of an electrical feeling surging into my muscles but lately is has become waves of nerve pain. This happens if I wake up in the middle of the night too so I pray I don’t. My right hand cramps up now from very little writing or drawing (even just filling out a check can cause a cramp). As someone who draws for a living you this would be the most devastating and maybe it would be if I wasn’t worried about being able to swallow.

All this time I was working and over time very slowly all these things began to affect my work in different subtle ways. The physical would be enough to cause problems but I also experience mental fog and lots of anxiety. I get anxious if I go into the kitchen to make dinner never mind a client meeting.

I have also had a few strange things happen like phantom teeth pain and intermittent loss of taste. Once I had an intense taste and smell of garlic out of the blue.

Taking Sinemet

One day last year my mom asked it it could be Parkinsons. My grandmother had it. I said no. From what I read it didn’t sound like it. I had no resting tremor (which 70 percent of PD people eventually have). I had all these nerve sensations. But overtime my most bothersome symptoms started to look a lot like Parkinson’s. One day I noticed my left arm didn’t swing when I walked. This I knew was a PD symptom. I read one way to test for PD was to take a trial of Sinemet which is the medicine for it. Sinemet has levodopa which your brain uses to make dopamine and carbidopa which helps the levodopa past the blood brain barrier. They don’t know the cause of PD but they do know that people with PD have lost significant dopamine producing cells which play an important role in movement. I saw a new neurologist and he agreed to try me on it and it helped. In a half hour of taking it my muscles felt more relaxed. After several weeks on it I could see more expression in my face, my left side became more balanced with my right, and my hands became more coordinated.

It is not a cure. The Sinemet is not time released so the dose is always either going up or going down. If I am having a particularly bad day (good and bad days seem to happen for no apparent reason) I will have just a couple hours of relief a half hour after each of the three pills I take a day.

New symptoms all the time

This disease is pretty hard to ignore. Out of nowhere I will have a bad day or a few bad days in a row or develop a new symptom. My most recent new symptom I call the claw. As I am walking my left hand will slowly stiffen up until I am actually expending a lot of energy keeping it that way and finally notice it at which time I tell it to stop doing that but before I know it, it is doing it again. Drives me nutso.

So PD is a challenge

It has and will continue to affect and change my plans. It is always affecting when I eat for example. I must take the medicine on an empty stomach in order to get the full benefit. This is harder than it sounds because I take it three times a day and need to take it at least a half hour before or two hours after I eat. It also requires me to have an exceptional amount of courage to do fairly ordinary things. It had changed my career goals. And it has made it more important than ever I make time for exercise and eating healthy.
Parkinson’s Disease was not part of my plan. It had changed my plan but has not become my plan. And I am still happy!

Reading 

I always go for the biographies because I find them so inspirational. Two really great ones I read this year were Michael J. Fox’s LUCKY MAN and A LIFE SHAKEN by Joel Havemann. They are both personal stories of symptoms, diagnosis, coping, achieving, and finding the silver lining. I really enjoyed both of them. Check them out on amazon by clicking on the images below (these are affiliate links, thanks for supporting this blog).

If you came to this post Googling symptoms, please feel free to email me at doodlesandjots@hotmail.com with any questions you might have.

Follow my PD story from the beginning….

 

Ann

I'm a practical mom inspired by nature & I enjoy sharing ideas that encourage kids' innate curiosity & creativity. Interested in subscribing? Check out the blue box at the top of my sidebar. I'm also a wannabe author/illustrator & product designer by day. Let's connect! doodlesandjots@hotmail.com. If you purchase through my Amazon links I get a small commission at no additional cost to you (thanks for supporting Doodles and Jots)! And remember to always credit your source here & elsewhere on the internet.

12 comments

  1. Happiness is completely independent of circumstances. Thanks for linking to those biographies! Another you might be interested in, Brain on Fire – the girl didn’t have Parkinson’s, but it did start with a bedbug scare!
    Elisa | blissfulE recently posted..John’s first walkMy Profile

    • I read that one too and you are right she had a bedbug scare! I think she even had exterminators come. The brain is a strange place. Yes that is a good one also and I am sure she is right that there are probably many more people suffering with that type of encephalitis that are misdiagnosed with mental illness.

    • I think the carbidopa/levodopa has been around since the 1960’s. Was he on meds before that? If so I am sure he had worse side effects. Luckily I don’t have any side effects. Freezing is a strange symptom. I don’t think my grandmother ever had that happen.

  2. This is going to sound weird, but it has been fascinating following your symptoms and how you have gone about explaining them/wondering about them. The thing that gets me is how weird and random your symptoms have been. You are being incredibly brave and strong, and I’m so glad you’re getting some relief with your meds.
    Jeanette Nyberg recently posted..How to Get Rid of LiceMy Profile

    • I know! I think a lot of doctors doesn’t have much experience recognizing it unless you are having perfectly classic symptoms. Even then doctors don’t always think of it because it is pretty rare for young people to get. Funny thing is there are many people in the YOPD Facebook group that describe their symptoms the same way I do and it is not uncommon for it to take years for a diagnosis. Recently someone commented doctors should join the group and then maybe they would have a better understanding of what their patients are experiencing. I thought that was such a good idea!

    • Thanks Erica. I am glad you found it helpful. My symptoms are not exactly typical but seem to be within the spectrum. I think a lot of people don’t know much about it because a lot of people with it don’t like to talk about it. For some strange reason it feels embarrassing or like you are complaining but I try and push that aside because I feel like the more awareness there is the better for general acceptance, treatment, and research.

    • I am just learning too. There are things you can do to minimize your risk of getting it like drinking coffee and limiting exposure to neurotoxins like pesticides.

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