Parkinsons Disease Stalks its Victims Over Many Years
by sarah johnson
Like so many other diseases, Parkinsons Disease [PD] seems to sneak up on most of its victims. In all of the PD patients I have met and worked with, none of them - or me for that matter - were perfectly fine one day and a PD patient the next. Parkinsons is, for most of us, a long, slow decline in ability over several years, so gradual that you hardly notice.
The symptoms you do notice could be from any number of causes and are addressed and treated one at a time, as they appear. If your jaw locks, you see a dentist, who diagnosis TMJ. If your shoulder aches and your arm begins to hang uselessly, not swinging properly when you walk, you might be sent to an orthopedist or rheumatologist. If your knee or ankle becomes horribly painful - for no apparent reason - you may be sent to a sports medicine professional. Should your voice begin to soften and words are difficult to FIND, let alone SAY, those around you may think you are being non-cooperative. Others may "call you on the carpet" for walking and moving slowly, as if you were purposefully being lazy. We didn't know at the time that fatigue and lethargy are part of the "Parkinsons package." For many who suffer from PD, an early symptom [although we didn't know it at the time] is our handwriting...it gets smaller and smaller and smaller until it virtually disappears! Taking notes, writing orders, working on a computer keyboard, taking messages and even signing your name becomes a huge problem! In my case, even signing my initials was almost impossible. Imagine trying to get through a fast-paced work day not understanding why your body is betraying you. Also imagine the displeasure of the employers.
For instance, I "got in trouble" at work for showing no facial expression, my face "mask-like", hardly blinking and staring like an owl when I spoke to other employees. I replied that I wouldn't do that when speaking with someone and my supervisor said "you are doing it NOW." Now? As I talked, I could feel [inside] my face change with different words and with expressions. The problem was that while everything felt "normal" to me, I was absolutely unaware that what others saw was n-o-t what I felt. They thought I was being rude.
Another sneaky symptom is unexplained sadness, depression which cannot be attributed to any specific event or cause. When people ask what is wrong, it is true that you just don't know. Of course, we did not know at that time that 80% of the dopamine-producing cells in the Substantia Nigra were already dead - and that is the same part of the brain which produces serotonin, which make us happy.
For many, getting a good nights sleep becomes a major challenge.
It may be difficult to get to sleep, then you cannot stay asleep - - it is almost impossible to get comfortable and it is a full-time-job to try to turn over! For some, legs feel irritable and restless, finding no relief in any position you put them, their movements out of your control. Restless leg syndrome is both frustrating and exhausting.
As the yet undiagnosed Parkinsons Disease marches on, some people find eating a real problem. If PD is affecting your dominant side [right-handed or left-handed] getting food from a plate into your mouth becomes a major undertaking. Even if you can corral the food on a fork or spoon, covering that seemingly endless distance to your face is a serious challenge. And...once [if!] you get the food that far, hitting your mouth with the fork or spoon may or may not be do-able. Imagine the frustration of discovering that you can no longer eat with other people because you will most likely end up wearing most of your food - - and still be HUNGRY!
You may be asked why you are dragging one leg when you walk, and that question will surprise you. Dragging my leg? I don't do that! While you may not realize that your legs no longer work perfectly automatically, those around you are seeing the change. Then there are those pesky urinary urgency issues for many people. One moment you are fine and the next you realize you have to go to the bathroom NOW. Ops - what happened to my "advance notice"? We did not know at the time that this disturbing behavior occurred because muscle rigidity was interfering with our "early warning system."
Although the list of possible symptoms goes on and on, I think you are getting the idea that Parkinsons Disease slowly and surely sneaks up on its victims over a period of time. The national average to get a correct diagnosis is five to seven years! Why, you are wondering, didn't we go to the doctor sooner? WE DID.,,the physician, the dentist, the orthopedist, the rheumatologist, the sports medicine specialist etc. Each treated the symptom they saw, unaware that the series of "unfortunate events" was part of a bigger picture playing out on one half of our bodies.
What, for most of us, was the straw that broke the camels back? That famous tremor, which is about the only symptom the uneducated public recognizes when thinking of Parkinsons Disease. It may begin with a finger, or a wrist, or hand or one leg. Most PD patients say they felt like they were vibrating inside before they noticed that they were visibly shaking. When we saw that - and added it up with all the other apparent unrelated things that had been happening to us - the terrifying words "Parkinsons Disease" occurred to us and we were once again off to see a doctor.
What did most of us know about PD before we were diagnosed? All I knew was that it makes you shake and that it's incurable. Research on my computer for months, which has turned into years, has given me a better understanding of PD, its wildly varying symptoms and treatments. Parkinsons Disease is a degenerative, progressive neurological disorder which does NOT go into remission and HAS NO CURE. Less than 5% of all cases are genetic, so PD is seen as an equal-opportunity attacker. While Parkinsons used to be considered an "older persons disease", today almost half of all cases diagnosed are in those ages 20 - 50 years young! Michael J. Fox describes Parkinsons as "the gift that keeps on taking and taking."
Research has convinced me that while we may not get better, we won't necessarily get worse. I am also convinced that we can learn to live well with this disorder. In my heart of hearts, I know that ways to slow down the progression of PD - even ways to protect brain cells from being destroyed by PD - are in the works. More treatments are available today than ever before. More awareness and education can help possible PD patients from becoming almost totally disabled before they seek medical help.
And, in my heart of hearts, I have HOPE. I may not be a recipient of the medical breakthroughs which are in the pipeline, but I know they are coming. And I am grateful for the abilities I still have, which help me help others. If you or someone you love is suffering from Parkinsons Disease, please call 209-296-2575 for education and support. You don't have to go it alone anymore!
