The Hidden Side of Parkinson’s

I was brought up to not discuss my problems. I should keep them to myself and figure out how to solve them on my own. Probably not the healthiest way to deal with things and it really upsets my husband when I get quiet and don’t say why, but there you are. However, I have a problem I’m going to take public. You need to know.

Awhile back, I told you that my mother had been diagnosed with Parkinson’s disease. By now, everyone knows that Parkinson’s causes uncontrollable tremors in the extremities: Muhammed Ali and Michael J. Fox have brought this part of a devastating disease into the public eye. But what they don’t tell you are the other symptoms: chief among them are personality changes and cognitive impairment. There’s also “bradykinesia”, which is stiffening of the joints, and handwriting changes.

I read a news article just a couple of days ago that describes the problem succinctly: with Alzheimer’s, the patient doesn’t recognize the family; with Parkinson’s, the family doesn’t recognize the patient. This is so true. To the outside world, Mom is still a cute, little white haired lady that walks a bit slow and doesn’t hear so well. The public and her friends don’t see that the woman who was my best friend for the majority of my life no longer really cares about much of anything unless it pertains to her specifically.  She doesn’t share my excitement that my book will soon be on the shelves; my joy in the twin grandsons my son and his wife have given me; or the anticipation of the next grand? that my daughter and son-in-law are expecting.

The woman at whose knee I learned bookkeeping can’t keep a checkbook and has spent herself nearly into bankruptcy. The woman who virtually raised me by herself and taught me that a butter knife can be both hammer & screwdriver doesn’t recognize that when the thermostat is set on 55 and it’s 80 in the house, something is wrong with the A/C.  The woman who used to dance with joy at the sound of bluegrass music can no longer easily get out of her chair. The woman who has been praised throughout her life for her beautiful penmanship now writes with a microscopic hand.

When I told you about her diagnosis, I said we were going to fight it using integrative medicine – the prescription drug that replaces the dopamine her body no longer manufactures, and herbs to support some of the symptoms. Knowing she has a bad memory (now), I wrote everything down. The problem is, she doesn’t read my note and forgets that animal protein interferes with her prescription, or that turkey, for example, is animal protein. If anyone has any suggestions about written instructions that might get read & followed, I’m all ears!

Initially I thought the personality changes were just due to her getting a little stranger in her golden years, especially after my dad passed. After all, my family has a history of “quirkiness”. (I can’t throw stones, here!)  But now I see at least some of those changes were early symptoms of Parkinson’s. It doesn’t make me feel any better but at least I know why she’s acting the way she is.

I usually deal with stress rather well. Frustration gets taken out via physical activity but it’s been too bloody hot to do much outside – my favorite way of working up a sweat and releasing stress. The house is about as clean as it can get! But as soon as I’ve calmed myself down from the latest whatever, I get another phone call.  She’s not to the point of needing assisted living so I’m stuck for awhile. Thank goodness for my husband, family and friends. Without their love and support, I probably would have snapped by now. (Yes, I know there are support groups.  Please see my statement in the first paragraph!)

The next time you hear a diagnosis of Parkinson’s, please be aware that it’s not just the tremors. There’s a lot more going on that the family has to deal with and they can use all the love and support you can give them.