Testimonials

Responsive Support

I would like to express my appreciation for the caregivers support group sponsored by the Parkinson Association of the Carolinas. This group, along with it's leader, Debbie Huffman, has been extremely helpful to me. I have found assistance in numerous aspects by attending these monthly meetings. The support of others who face the same difficulties, have the same questions, and share the same sorrows and joys, is very comforting.

I have enjoyed and profited very much from the guest speakers who have addressed the group. I feel that any time we caregivers express a concern or desire for more information on a topic, Ms. Huffman attempts to find literature, a website, or a speaker to assist us in our query. It gives me solace to feel I am not all alone on this path.

The Association has provided funds for the purchase of literature on the topic of Parkinson's Disease and related issues. I found one series, The Caregiver's Survival Series by James Sherman, Ph.D., to be especially helpful. Another service provided by Debbie Huffman is to keep us up-to-date on the latest research and theories regarding Parkinson's Disease. We are grateful for that as we wish to be knowledgeable of the present information and hopeful about the future.Thank you very much for making it possible for this support group to exist.
Deborah Burnham, Parkinson Association Member

Openess and Friendship

We who have Parkinson's should recognize our good fortune(!), not because our brains no longer supply us with dopamine and we must accept the consequent disability but because there exists a proven vehicle for rendering assistance, the support group.

Last year when contemplating an extended visit, or move, from the Pacific Northwest my major concern was how I would deal with the needs of my PD. More than changing climate, separation from friends, or financial adjustment, my biggest worry was about the break in my health care. That's why the support group was so important, one that I was confident I would find and did find here in Charlotte.

Thanks to the organization run by staff and volunteers there have been regular meetings for my family and me to take part in. Programs have been meaningful, some time with speakers from the health field, sometimes on broader related interests, such as congressional action under consideration, community offerings, or district meetings or conferences. Although small, but not insignificant, is the library, with its information at no charge.

Over and above all else, the support group is the strengthening of morale, the psychological nurturing that occurs. People with common problems share experience and questions--about doctors and symptoms and walkers and scientific programs. The openness and friendship assure us that we are still part of the human race. This is far more satisfying than the pills.
Marian Cole, Parkinson Association Member

Attitude Change Through Support

I'm very new to the group but, then I'm quite new to the idea of having this disease. For some time, while I talked to my family and close friends about the diagnosis, I really stayed in denial to some degree. If I didn't spend time with others who had it, I seemed to think without thinking, I wouldn't really have it. Gradually, the awareness that an attitude like this wasn't getting me anywhere began to dissolve.

Still, the first time I attended a meeting, I went there reluctantly.

However, when I saw people in much worse physical condition than I who were leading not only productive lives, but happy lives, my attitude toward the disease began to change and its long term reach seemed much less foreboding. While the subject matter of each meeting is helpful (e.g., how to work on difficult speech, terms associated with Parkinson's, medication) the major help to me has been the association of others and how they're handling themselves.

Knowing that there is an outlet for me to turn to for information about Parkinson's is great for the Charlotte community and the added plus of talking to others who are looking at the same physical future is even better. Thanks to you and those farsighted individuals who have seen to it that this organization is available.
Darlene Jonas, Parkinson Association Member

Regaining Independence

At age 39, Larry Perry was diagnosed with Parkinson's Disease. An active athlete, running 10 miles a day, playing basketball and hunting, he soon had to give up all of this because of the disease. He eventually had to retire early.

Parkinson's Disease is different for everyone. Sometimes progression is slow and for others it can progress rapidly, like Larry's. At age 48, he decided that he had to do something to control his tremor, to help his freezing and to help with his speaking. He had lost his independence and control of his body.

Medications were not helping with all the symptoms, so he had an operation done called a pallidotomy, an irreversible surgery. Larry came out of the procedure with control of his tremor on one side of his body, but how was he supposed to gain full independence if he still had a tremor on his other side. Surgeons would not perform another pallidotomy.

In 1999, Larry was approached about applying for a new procedure called an electrode implant. The good thing about this surgery was that it was reversible, and it was an opportunity for him to control the tremor on the other side of his body. As he went through the surgery, he was awake to help doctors pinpoint in his brain where the stimulator needed to be placed. This is very emotional for doctor and patient to be in the operating room and see the results of the stimulator. A patient is asked to hold up a cup. Obviously, the patient is shaking, when the surgeon pinpoints the right place for the stimulator, the shaking stops.

The electrode stimulator is controlled by a device similar to a pace maker. The tremor can be turned on or off. Larry chooses to keep his on all the time. Today, he is walking up to 8 miles, playing some basketball, can hold a gun to hunt and is working. He still takes medications to control other Parkinson symptoms. Though we have medications and surgeries to help control the disease, we must still be hoping for a cure!

Member Profile: In Sickness and In Health

We are a couple who belong to the Parkinson Support Group of the Carolinas. We met in Atlanta, Georgia in the Reservations Control Office of Eastern Airlines. People actually did by hand and with telephone contact, what computer now control. The handsome young man, just graduated from Georgia Tech., was a supervisor understudy. I just graduated from Oglethrope University and reported for my first job at Eastern Airlines. After weeks of training together, short coffee breaks and long phone conversations, romance blossomed.

I resigned to marry, and he retired 37 years later, in between three children blessed the union and gave us six handsome, bright, tall, strong grandsons. Then followed the never ending, happy family celebrations of graduations, engagements,marriages and so on.

It seemed a never ending series of challenging events; an entry into exciting world of computers and a move to the most exciting city in the world, New York. We also lived in Atlanta, GA and Miami, FL; with pleasure trips to England, Italy, Germany, Switzerland, Denmark, Austria, Netherlands; and cross country camping in the United States.We finally moved to Charlotte, NC, a beautiful blend of gracious Southern living mixed with Northern imports and immigrants.

Somewhere along the line, his humor was less engaging and more cutting. Not understanding the reasons for the change, feelings were hurt and confusion abounded. Now we understand one of the first symptoms of Parkinson Disease is a lack of facial expression, which confuses the social contact between people and leads to misunderstanding, just as the wrong word would cause confusion.

Next was the frustration of motor control. In between work and family responsibilities, many hobbies were explored.

The favorite for the family, was camping, which was done across this beautiful country from Charlotte to California. It gave our family an appreciation of the most beautiful and varied country in the world. The favorite for him (and most of the time for me), was sailing. The “most exciting day of his life” was his first trophy won in competition on Lake Norman. In 1995, we took a First Place, in our category, in the Flying Scot National Husband and Wife Regatta.

It was during the crunch of racing, while rounding a mark, trying to control the sails and the rudder, avoiding other fast moving boats and not hitting the mark, that we noticed that something was amiss. The speed of controlling the sheets (ropes) had slowed. Tempers flared and racing became more demanding than physical bodies could abide.

Still we didn’t know why. After treating my poor hubby like a ping pong ball and sending him back to the doctors, after they had sent him home with a good report, they finally suggested a neurologist. It was then that he was diagnosed with Parkinson Disease.

Now that your problem has a name, what can you do? We have worked with a very understanding doctor to monitor, explore, try and change the medications until the correct most effective regime is found (realize that constant vigilance is required and change is constantly needed.)

There are two issues you must meet head on and realize they are “out to get you.” One is “depression” and the other is “inactivity.”

It is only whether you recognize that you are not alone and there is always someone who is in much dire need of your understanding, that you can accept the diagnosis being Parkinson Disease with any kind of hope for the future. Hope is the key to success.

Ann Wilt diagnosed with PD, 1997
Frank Wilt diagnosed with PD, 1987