George Manahan: Parkinson's: life with unpredictability
Three years ago, I felt the muscles tighten in my right arm and leg. A month later, the tremors began in my right arm.
I would stuff my flapping arm in couches, pants pockets, anything to get it out of view of curious onlookers.
I own a public relations and advertising business where image is important, and I was concerned about how it would be perceived by clients and the community. I was concerned it might ruin everything I had worked so hard to build over the past 25 years.
When I visited my primary care physician, he had a good idea of my prognosis, but sent me to a neurologist for confirmation. The earliest appointment I could get was six long weeks away.
I saw sadness in the eyes of my physician as we discussed the possibilities.
He knew I lived an active life. But he also recognized that my life, as I knew it, was about to change.
What I knew of Parkinson's disease, I learned from following the career of Michael J. Fox. While that was helpful, I learned quickly that everyone's disease varies in symptoms, progression rate and severity.
Parkinson's disease occurs when your brain cells stop producing a drug called dopamine that is used to control muscle function.
Dopamine is like the oil in a car. Without it, your car doesn't run smoothly. I learned that at the time of diagnosis, I had lost up to 80 percent of the cells in my brain that produce the dopamine I needed to control my muscles.
I had had Parkinson's disease for the past five years and didn't know it.
The loss of smell, the frozen shoulder, the curling of my right foot were all signs of the disease.
While most people will get Parkinson's after age 60, more and more people are being diagnosed under 50. I was 49, and I know of people who were diagnosed at 22. Michael J. Fox started his journey with Parkinson's at 28.
Some PWPs - "People with Parkinson's" - don't have tremors. Their symptoms can include muscles that freeze in mid-step, feeling like someone has nailed their foot to the floor, or their face muscles lock up, producing blank, almost mean, stares.
Other people can have dementia, slowness of movement, difficulty sleeping and swallowing, handwriting that gets so small you can't read it, and more.
The most difficult aspect of having Parkinson's disease is the slow, progressive loss of your ability to walk, talk and think.
A Parkinson's friend of mine goes to the house of a disabled friend, helping her with daily tasks. One day she turned to her disabled friend and said, "I don't know how you do it, being in a wheelchair every day."
Her friend replied, "I am fine. I know what my challenges are and have come to terms with them."
She then said: "I don't know how you do it. Your disease slowly gets worse and you have no idea what you will be dealing with tomorrow, next year or five years from now."
This story highlights why a recent study indicates that 70 percent of PWPs will go through depression at some point of their illness.
While Parkinson's disease challenges me every day, this isn't a story of a life lost, but of another life gained.
I have come to know some of the most amazing people - fighters - who won't let this disease defeat them.
They are supported by family members and caregivers who will do anything to help them beat back Parkinson's for another day. And then start the fight over again tomorrow.
When I was diagnosed three years ago, the Charleston area lacked a support group. From what I can ascertain, there are only three Parkinson's support groups in the entire state - in Vienna, Huntington and Martinsburg.
Those without a place to turn to for support find themselves suffering at home, alone.
Yes, many of them have doctors and family members there to help. But until you get a disease like Parkinson's, you don't understand the desperate need to connect with someone else going through the same battle.
Your first three years will determine whether the outlook of your journey with Parkinson's will be a positive or a challenging one. A support group can make a big difference.
With the help of a group of amazing people, we started a new Charleston support group in May. The group meets at 6 p.m. every third Monday at the Alzheimer's Association office off Kanawha Boulevard at Patrick Street Plaza.
Our next meeting is Monday.
This is just the beginning. Working closely with the Alzheimer's Association, we are looking to set up support groups in other parts of the state.
And, over the next year my goal is to create a West Virginia-based website where people with Parkinson's, caregivers and others in the fight against the disease can go to find information about local support groups and Parkinson's activities in the state.
The fight against Parkinson's and other neurological diseases like Alzheimer's and multiple sclerosis requires the hands of many.
There are many ways you can help either through donating your time, money and expertise.
Contact your favorite organization, or I welcome your emails at Manahan@aol.com.
Manahan is chief executive officer of The Manahan Group, a Charleston-based public relations and advertising firm.