Parkinson’s Disease Awareness Month, Two Years After My Diagnosis

Everyone’s experience of living with Parkinson’s Disease is different and I thought it was time to share mine during Parkinson’s Disease Awareness Month. It has been two years since my diagnosis yet most people that meet me for the first time are unaware that I have PD.

The red tulip is the international symbol of Parkinson’s disease and was chosen as a symbol of hope for Parkinson’s sufferers. The flower is a red Triumph tulip with a white edge named the Dr James Parkinson tulip by a Dutch horticulturalist who himself was living with Parkinson’s.

More than 10 million people worldwide are living with this devastating disease of the nervous system. Following Alzheimer’s disease, Parkinson’s disease (PD) is the second most common neurodegenerative disorder in the United States with nearly 90,000 people being diagnosed each year. Experts predict that the number of people with Parkinson’s disease will double by 2042.

I’m lucky that so far medicine has my tremors under control and it is just little things that have changed. If I haven’t told someone, I don’t think they would guess that I have PD unless they are familiar with the disease. My neurologist says that he believes I’m lucky as it started later in my life and to just think of it as a little inconvenience.

Like many parts of the body, we tend to take our hands for granted. When healthy, our brain coordinates the muscles, joints and 27 bones in each hand to work together to carry out a task; it is referred to as having good dexterity. When my left hand started to work less efficiently, was painful and had a slight tremor, that was when I made an appointment with a neurologist.

Stiffness and slowness of movement (bradykinesia) make hand and wrist movements more difficult and I’ve lost a lot of my dexterity so my hands don’t move as precisely or quickly as they should. I’ve adapted my routines by adding extra time to each activity whether planning a meal or preparing to go out for an evening with friends. I joke with my husband that I’ve gone from being like a fast hare to now being like a slow tortoise.

PD has made the process of getting dressed a little more challenging, particularly fastening buttons, pulling zippers, tying bows and putting on jewelry which at one time I could do almost automatically. When you button a shirt, one hand holds the material and opens the buttonhole so the other hand can hold the button and push it through; simple but not for me anymore.

The plastic bags in the produce department are frustrating to open as are hermetically sealed bags of crackers, nuts or chips. Screw top bottles and jars will not open unless I use a specially designed tool. I find it difficult to cut lots of foods even if they are tender. I order my salads chopped and ask if a steak can be served sliced. If my huband and I are at a buffet, he will carry my plate back to the table and often helps cut items on my plate that I am having difficulty with.

Using my computer to write my blog also takes much longer than it used to as my typing has dramatically slowed. My fingers don’t stretch as they should so I hit a lot of wrong keys and they sometimes cause me to touch the same key two or three times. Needless to say, there is a lot of editing to be done.

Everyone’s Parkinson’s is unique and while I may becoming a tortoise, I’m learning to live with these little annoyances and try to keep a positive attitude. So far there is no cure for this disease but there are medicines to help control it. Hopefully this “minor inconvenience in my life” will stay minor for some time to come and in the meantime I’m going to try to live life to the fullest. I have a wonderful support system with my loving husband and good friends always at the ready.

“Do not let what you cannot do interfere with what you can do.”

(John Wooden)