1991: Don had been retired from his career as a U.S. Navy submariner for 4 years. Our family was complete with 4 boys (ages 18-28) and 4 girls (ages 12- 30); we had four grandchildren, and we had finally settled into a relatively normal life pattern. Don was teaching electronics and math at the high school; there were four children still at home and we had purchased 6 acres of beautiful lake front property on the Olympic Penninsula with dreams of building a house and retiring in the quiet loveliness of this forested retreat. In October, Don was asked to do a reading of Ole Man Adam and His Chillin' at our church talent show. Don was a good speaker and storyteller and he was never self-conscious or nervous in front of an audience. After his reading he sat down next to me and said he couldn't figure it out, but his right hand was shaking like he had a case of nerves, but he wasn't nervous. Over the next serveral months, in spite of the busy holiday season, we would sometimes notice that his right hand was shaking when he was just resting it in his lap or at his side. In February I had the opportunity to purchase the "church bookstore", something I might only have dreamed of, if I had even thought of it, a few months before. After some discussion we decided that we would put our property at the lake up for sale...if it sold for our asking price, we would use the money to finance the bookstore, but if it did not sell, we would just have a nice library of church books and still have our retirement property. The property sold in 3 weeks; for our asking price and I was a very happy bookstore owner. I couldn't believe that Don had agreed to sacrifice the property and seemed to be okay with the decision. We had worked so hard on the property and had such fun with the children there; we'd had a family reunion at the lake in 1987 when Don retired from the Navy and our son, Scott returned home from his service as a missionary in South Africa. These were, and are, wonderful memories, but we could not have guessed how difficult retirement would have been on that property that sloped from the county road to the lake shore. By April we knew that Don needed to be seen by a doctor about his shaking hand and the after-school fatigue that caused him to fall asleep on the living room floor and not even want to wake up for dinner; this was so very much NOT at all like him. Don saw our family doctor first and was then referred to a neurologist who diagnosed his condition as Parkinson's Disease. We were shocked; Don was in denial and his mother kept saying, "I don't understand. He's my healthy boy, he's a swimmer and he never smoked and he never drank and no one in the family has ever had such a thing." Time would pass and soon there was no denying the diagnosis; so we did what we always did when facing something new; we read and studied everything we could find about Parkinson's Disease and counted our blessings realizing that there were worse diseases (or at least those that progressed more quickly and with more finality). Don started taking a low dose of carbidopa/levadopa (Sinemet) and was usually symptom free (at least to the view of those around him). Don's symptoms progressed slowly, and he added new medications to his "diet": Comtan, Eldepryl, Amantadine, Azelect, Requip,Permax and others were tried; some were discoutinued and others have become "good friends".
FAST FORWARD......
April 2012: For the past several years I have been Don's caregiver. Oh, I don't mean that every moment has been occupied with attending to his needs, nothing could be farther from the truth, but he needs my help dressing; I do all the driving; I am constantly on the look-out for safe paths (moving things and people out of his way...'cause once he gets going he needs a straight, clear pathway to wherever he is headed). He needs help cutting his food and reminders to take his medicines (there are MANY now) and encouragement to take l - o - n - g steps, and he needs my arm when his feet start to "stutter" in a doorway or at a transition in flooring. Don is amazing...he is determined to do as many things on his own as possible and he will spend hours with the impossible before he will ask for help. All of this said, he is spending more time in his wheelchair and would certainly not be able to live alone (even if sometimes I'm sure he'd love to dimiss me and give it a try). And now for the unthinkable.....last October I noticed that my right hand had a tremor and in December, I noticed that when I was sitting quietly, my lower lip or jaw would tremor. I also began to find my self saying, "I don't know why I'm sooo tired." and "It seems like I need a nap every afternoon about two.". Our daughter, Rachel lives nearby and noticed the tremor in my hand; when I told her that it had been going on for several months, she said, "I think you better see the doctor about that.". Don had an appointment with Dr. Roberts, his neurologist, and as I sat in the exam room with him, Dr. Roberts looked over at my hand at rest in my lap, but tremoring, "You've got a tremor, too." he said. "I know, I was going to talk to you about that.". Dr. Roberts turned his attention to me and ran me through a quick version of the neuological tests I'd seen him do so often with Don. "Hold your hands out in front of you like this." (right hand tremoring; left hand steady as a rock). "Tap your thumbs and forefingers together like this, as fast as you can." (left hand performing like the doctor's; right hand slower and more jerky). "Walk down the hall for me; just down to that third door and then back." ("not much arm swing on the right side"). More requests...then..."Hmmm. If you can get a referral from your primary care doctor, I'd be glad to do a complete work-up.". I got the referral; I got the work-up; I had an MRI brain scan and blood tests; I knew that all he could do was to rule everything else out.....then he gave me a prescription for, you guessed it, Sinemet. "Let's have you try this for a few days or so and see how you do." The weekend came and went; on Tuesday Dr. Roberts called to say that the blood tests and MRI didn't show anything abnormal (that was a relief....or was it?)..."How are you doing?" he asked. "Well, the medication is working...I'm not sure if that's good or bad!" I knew that your perspective can change everything and so my thoughts ran something like this: there are worse things than Parkinson's...I already know about this disease....Don has lived with it for 20 years and he still has a pretty good life....in twenty years I'll be 90 & by then I should have something wrong with me...I only wish that this could be a guarantee that nothing else will go wrong (one disease to a customer...wouldn't that be nice?). At my next visit to Dr. Roberts he asked if he could take a video of me and then of Don...he's going to a conference and would like to show other doctors....."We're going to be famous." I said; then looked at Don's orange T-shirt and my orange blouse and laughed..."They're going to think we staged this!" I laughed as we left the office. The phone calls to the children, all eight of them, was harder on them than on me, but I shared my thoughts with them and said, "After all, I'm no different today than I was yesterday, except I have more knowledge." I can deal with this, but in spite of the fact that there are no other occurances of Parkinson's in either Don's or my family (for many generations back) the kids now have two parents with Parkinson's...what does that mean? Was there something in the environment? Have they been exposed? We will be doing as much research as we can and will participate in trials and studies if we can be of use to the body of knowledge. Wish we had the answers, but for now we'll just be living, loving, and learning....and sharing what we've learned along the way with others.
