Parkinson's and Me
Bob Lockhart (1934 - 2018)
Bob Lockhart (1934 - 2018)
Bob Lockhart (1934 - 2018)
The Diagnosis, written 2013, updated 2017
“Bob, you’ve been my patient and my friend for a long time. I want you to hear this from me and not from someone else. I think you have Parkinson’s Disease.”
With those words, one chapter of my life ended and the next began. I went into shock and, for the briefest moment, tears welled up in my ey
The Diagnosis, written 2013, updated 2017
“Bob, you’ve been my patient and my friend for a long time. I want you to hear this from me and not from someone else. I think you have Parkinson’s Disease.”
With those words, one chapter of my life ended and the next began. I went into shock and, for the briefest moment, tears welled up in my eyes. I wasn’t prepared for what he had to say. I wasn’t prepared to hear that I had Parkinson’s Disease, a degenerative brain disorder for which there is no cure. As I regained my composure, my mind immediately entered into a state of denial. I heard Doctor Perry explaining what symptoms had led him to that conclusion. For each symptom he mentioned, I came up with a different explanation.
Shaking or tremor at rest. Well, yes, I had developed an annoying case of tremors in both hands. That was what I was there for. But there are many reasons why one could have tremors besides Parkinson’s.
Slowness of movement. Well, yes, over the past couple of years that had become a joke between Karen and myself. Whereas I used to lead the charge when we were walking together, now I kept falling behind and she had to wait for me to catch up. But that doesn’t necessarily mean Parkinson’s. I am just taking my time to smell the roses.
Rigidity of the arms, legs or trunk. Well, yes, Yoga class has become a challenge. But I simply need to warm up a little more.
Trouble with balance and falls. Well, yes, I had pretty much given up bike riding because I kept falling down. But I just need a little more practice on tight turns.
None of these symptoms meant Parkinson’s Disease, I told myself. Surely Dr. Perry, in whose hands I had placed my life and health in the past, was wrong this time. Be that as it may, I consented to see a neurologist and an appointment with Dr. Ackerman of the MSU Department of Neurology was set up for three weeks later.
The three weeks between Dr. Perry’s diagnosis and my appointment with Dr. Ackerman were an emotional roller coaster.
On any given day I felt so well that I questioned the need to see a neurologist. “Hell, I don’t have Parkinson’s. I’m going to take those Parkinson’s drugs for the rest of my life – unnecessarily.” I held on to my own explanation for any given symptom. I was in complete denial.
· Well, I’m bent over, but that’s because my glasses aren’t right and I have to lean forward to see things.
· Well, my voice has become softer, but that is because I have not had to do any public speaking for a while.
· Well, I have lost my sense of smell as many Parkinson’s patients have, but that was from over-use of a sinus inhaler.
· Well, my handwriting has become tiny. But that is because of the arthritis in my hand.
· Well, my balance sucks, but everyone knows that goes with aging. I am well into my 81styear, for God’s sake!
During the three weeks as I waited, I did some additional “research” on Parkinson’s symptoms. Only after reading about them, did I notice some of them.
Tendency to fall backward. I had just started noticing this in the past few months, and it scared the hell out of me. I had not actually fallen backwards but I had come close many, many times.
“Freezing” – a term used to describe the sensation of being stuck in place when attempting to walk. I had never heard of such a sensation, but it described exactly what I had been experiencing.
“Dysarthria” - difficulty in articulating words. This is something I had just begun noticing and I “sloughed” it off as something akin to being tongue-tied.
I tormented myself with the question “Am I just imagining these symptoms because I read about them, or do I really have them?” My mental torment was heightened because I had been told there are no standard tests for Parkinson’s; the diagnosis must be made on the strength of relevant symptoms.
My hope that I had been mis-diagnosed was dashed when Dr. Ackerman confirmed Dr. Perry’s diagnosis.
“If you are going to have a neurological brain disorder,” Dr. Ackerman said, “this is a good one to have, compared with M.S. or Lou Gehrig’s Disease.” He said that there is no cure for Parkinson’s disease but it generally responds well, in, early stages, to Parkinson’s medications and in particular to carbidopa/levodopa, which he then prescribed. In doing so, Dr. Ackerman added, “You’re lucky you are so old. We can keep increasing your dose of medication as much as you need without worrying about side effects – for the rest of your life!” I tried not to dwell on those precise words but kept asking myself “Does he mean that I don’t have long to live?”
Carbidopa/levodopa did make a big difference for the first few years. On good days I thought “I can’t possibly have Parkinson’s Disease.” 0n other days, when I didn’t get good night’s rest or when I was in a stressful environment, the symptoms abounded. A sense of hopelessness would set in, intermingled with irrational optimism. I guess I won’t have to worry about outliving my retirement annuity. Alas, denial is not only a river in Egypt!
I always thought I would go roaring into my 80’s. Friends and strangers alike would say “you can’t possibly be that old!” I had been in superb health. I ate a healthy diet, I ran 30-50 miles a week. I looked fit and felt good. However, in the couple of years before my diagnosis, that vitality had begun to slip away. I felt as if I had aged 10 years over night. I now knew why.
Perspectives on Having Parkinson’s Disease – 20 months later
11/11/14
The sky is obscured by clouds, ominous grey and black. The sun breaks through here and there, casting shadows on the earth below. For some they herald a new beginning a new day, a new life. For others, at best, acceptance of what is inevitable. For others—“You have Parkinson’s.” The words ring in my ears—each day is filled with symptoms not heretofore experienced. What will tomorrow bring?
Over the past year and a half, Parkinson’s has brought me some unexpected and interesting experiences.
One of them has been the phenomenon of “freezing.” At the outset of each episode, I am filled with amazement. I can’t lift my feet. They seem glued to the floor. Amazement turns quickly to fear. Can it be that I will not be able to walk again? As a cold sweat breaks out on my forehead, my feet inexplicably once again obey my commands.
And then there are the hallucinations. I often think I see people standing just beside or behind me, only to turn toward them and see that no one is there. I might also see little dogs or children in shadows or in patches of light on the road. As a rule, the things I see are quite innocuous, but somewhat entertaining.
In the past year I have learned that when I get sick or am under stress, and especially if I have anesthesia, the visions can become much more vivid. My mind becomes an astronaut, travelling through an alternate universe. The first time this happened was after anesthesia for a spinal injection. At home the night after my injection, my mind was still orbiting the earth. I awoke to what I thought was the sound of voices downstairs. “Whose voices?” I wondered. The room was totally dark. I couldn’t see a thing. I inched my way around the room. Everything seemed familiar, yet nothing seemed just right. At last I found a loose fitting door with a crack of light around it. Tilting my head to just the right angle, I could see what appeared to be a large hallway with several doors, all closed tightly. None of them looked familiar, but I was desperately hoping that one of them was a bathroom. Just then it hit me that I would have to leave the security of the room I was in, and at that moment, I did not have a stitch of clothing on me. I started opening all the drawers in the room, searching for something to wear. I was in no position to be finicky about my wardrobe, but really did not want to put on the woman’s clothing I was finding. At last, I located a pair of briefs by the side of the bed which I must have cast off the previous night and I pulled them on. When I finally made it downstairs, I “saw” some my old college fraternity brothers having a tailgate party in my kitchen. For some reason, they didn’t invite me to join them!
Another unexpected development has been the steady decline in my sense of balance. The first serious change I noticed was a sudden inability to use escalators. One day I stepped onto a down escalator and then completely lost my balance. I grabbed hold of the only thing available – the moving rubber handrail and hung on for dear life until it reached the bottom and deposited me on the solid floor, greatly shaken but unhurt. From then on I became an elevator jockey.
Falling down has become a way of life. Over the past year, there has been an average of one big fall each month. I exceed that average, however, during our time in Alaska. The very first day, I stepped out of the van at the Waterfront B&B and fell directly onto my face. A few days later, I began my cruise with a spectacular fall while disembarking at the first stop. With one foot planted firmly on the dock and the other foot on the boat which was heaving to and fro with the waves, I lost my footing as I slipped right into the water. After that, the captain assigned two strong crew members to more or less lift me off and on the boat whenever we reached a port. Even with the extra help, I fell every day, including one head-first tumble down the stairs. I left that cruise with a colorful souvenir in the form of solid purple bruises from waist to calf, plus countless scrapes and scabs up and down my shin bone.
The other memorable fall was on Beaver Island, on the way back from my morning walk. That time, I fell forward into a mud puddle and must have lost consciousness for a spell because next thing I knew a crowd of people were staring down at me. Someone had rolled me out of the puddle, covered me with coats and blankets, and called 911. I met more of my neighbors that day than I had in the previous 40 years!
Carla's Story
Bob Lockhart (1934 - 2018)
Bob Lockhart (1934 - 2018)
Carla shared her personal journey with Parkinson's...
Life was filled with life! Professionally I worked in the field of education. I belong to the Grand Rapids Dominican Sisters whose mission was primarily education. As a member, I enjoyed many opportunities teaching, as an administrator, and as a listening and challenging role with
Carla shared her personal journey with Parkinson's...
Life was filled with life! Professionally I worked in the field of education. I belong to the Grand Rapids Dominican Sisters whose mission was primarily education. As a member, I enjoyed many opportunities teaching, as an administrator, and as a listening and challenging role with adults. I am grateful that the Sisters and associates are with us today and for the financial support of the community.
Parkinson’s was a foreign word. I never thought about this condition, let alone that I might someday be diagnosed. My knowledge came from seeing Michael J. Fox and reading a few articles about him.
One day I was reading an article from the Parade magazine, part of the Sunday newspaper. As I remember, he indicated that he was experiencing some strange symptoms. Like many of us, he did not act on these symptoms. Instead, he waited a year.
As I reflected on my own health I realized I too was displaying some similar signs. I had tremors, I felt unsteady when walking, my handwriting was so small that even though I had written the words, even I could not make out the message.,The wonderful aromas from the kitchen, the taste of those dishes-– I was no longer able to enjoy them.
Of course, I denied the signs. As I reread the article I asked myself do I want to wait a year or do I want to check it out now. It was 2012. I decided to make an appointment with my primary physician. Normally it takes a few weeks or more to get an appointment. I was able to make that appointment in just 2 days.
A referral to MSU neurology within a few weeks confirmed that I had a mild case of Parkinson’s. With that, I began medication.
Somehow I heard about a meeting for those who were newly diagnosed with Parkinson’s sponsored by Michigan Parkinson’s Foundation. After that introduction I began attending the monthly meeting of Lansing Area Parkinson’s Support Group, a group whose mission is to offer support, education, and other resources and more to people with Parkinson’s and their loved ones.
After a few meetings I agreed to greet people at the support group meetings. I began and learned that included attending the steering committee meeting. I must have asked too many questions because I was then asked to chair the steering committee.
I continue to serve as chair. I would recommend that others -both persons with Parkinson’s or/and their caregivers consider joining the Lansing Area Parkinson’s Support Group in this worthwhile mission. Together we can make a difference.
On behalf of Persons with Parkinson’s and their caregivers - a heartfelt thank you.
Chivalry
Bob Lockhart (1934 - 2018)
Chivalry
A poem - in memory of Fred Deihl
Chivalry
Hold the door open,
admire the way she walks
40 years and I still look.
Both hands on the walker.
She slips off her coat so fast
Too far to the coat room, the walker’s wheel catches on a rogue chair leg
She takes back the coat, drapes it over her chair.
Hand her the menu
Wait to see what she selects
Can
A poem - in memory of Fred Deihl
Chivalry
Hold the door open,
admire the way she walks
40 years and I still look.
Both hands on the walker.
She slips off her coat so fast
Too far to the coat room, the walker’s wheel catches on a rogue chair leg
She takes back the coat, drapes it over her chair.
Hand her the menu
Wait to see what she selects
Can’t read the menu…..“I’ll have the same.”
Light from the window shines on her hair. She wears it short now. I miss it.
Can’t cut my meat. Or unwrap those damned crackers.
Have to use the bathroom. “I’ll just be a minute”
She is outside the door. “Are you alright in there?”
Pull out the wallet, but she has already paid.
She opens the door as we leave.
She drives the car right up to the curb.
I miss being the man.
- Char Ezell
In Memory of Fred Diehl