What You Can’t Always See About Living With Parkinson's Disease


In November of 2015, I was diagnosed with Parkinson’s disease (PD). I had told my primary care doctor  I was having problems writing. She referred me to a neurologist who, after some movement tests, told me I had PD.

Now other strange things that had been occurring in my body seemed to add further fuel to that diagnosis. I was having problems cutting my salad with the fork in my left hand. My flip flop sandals and clogs would not stay on my left foot when climbing steps. Flossing my teeth and washing my hair using my left hand are now challenging to say the least. From someone who used to type 60 words a minute with no errors, I now hunt and peck on the keyboard. My balance, flexibility and fluidity of movement, which used to be excellent from all my years of dance is failing. Swallowing sometimes is difficult. When I roll over in bed at night, sometimes it is so arduous, I wish I had a forklift to help me. Putting items into a bag or finding credit cards and money in my wallet confound me at times.

Although they are constant reminders I have a progressive, non-curable disease, these simple tasks I can no longer do with ease, things I have always taken for granted, are just daily aggravations and annoyances. Luckily I was a problem solver for most of my career so this skill comes in handy now. Most people look at me and say I look fine and nothing has changed.

However, there are two symptoms no one sees that really affect the quality of my life the most.

The first is the slowness of movement: it takes me forever to get dressed or to make
something to eat. Putting together a salad seems to take an eternity. Needless to say, I don’t eat much.

The second symptom and the most life-impacting is the extreme fatigue. This is a fatigue that cannot be diminished by rest or sleep. I wake up after a sound night’s sleep totally exhausted. Since I am so tired, being motivated to exercise no longer exists for me.
To bike 10 miles now (this used to be a warm up for me) takes me almost an hour, and I am wiped out after it. Most days, I will just lay in bed for hours in the afternoon since I am so exhausted after I have forced myself to exercise in the morning.

If it were not for the discipline and muscle memory I developed from years of dance and exercise, I might be in a far worse off situation. Since I have such bad side effects from the prescribed medications, I must rely on continued movement and exercise to help me battle this disease.

So, one day, if you see someone moving slow and you are in a hurry and starting to get annoyed since this person is holding up the line, that person might be someone with PD trying to find a credit card in their wallet. Try to have a little more patience and compassion.

Follow this journey on Slipped Away.

Image via Thinkstock.

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