Getting to Know Parkinson’s Disease

Imagine how you would feel if you began to have strange problems with your body - you have difficulty punching a number into a phone; your handwriting becomes sloppy and almost unreadable because it is so tiny; your friends say you do not smile very much anymore, and sometimes your facial expression is so frozen you look angry. Your legs reflect this and also seem frozen, as if taking a step is impossible. What could the problem be? Do you need to see a doctor, possibly about carpal tunnel? Do you need to see a psychiatric counselor? After visits to these and at least a dozen additional doctors, I was told to see a movement disorders specialist. This was once simply referred to as a neurologist, but with advanced research and training, it is clearly identified as a classification all its own, with Parkinson’s within its scope. What kind of name is that for an illness, anyway? It is not a disease, so those of us afflicted usually just drop “disease” or simply call it “PD.”

How do you know if you have it? This is the tricky part. There is no test that will give you a certain score, or have something show up in your blood if you have it. It requires a slow, comprehensive series of tests and movements, which are often videotaped. By the time I reached this stage, several months had passed. I was a very young 42 years old. Most people diagnosed are at least age 60+. There are some who have “early onset PD,” such as Michael J. Fox and Linda Ronstadt. Obviously, famous celebrities are not immune: Neil Diamond, Mohammed Ali, Janet Reno, and Billy Graham all had PD. So, you ask, what makes this such a dreaded illness? That answer is

So, you ask, what makes this such a dreaded illness? That answer is simple: it completely takes away life as you know it. You have no choice but to live with what it hasn’t taken away from you. If you played a sport, you must give it up due to your loss of coordination and balance, If you played a musical instrument, or wrote as a past-time hobby, the involuntary movements of your arms and hands will make this challenge a chore rather than a joy. One of the worst symptoms is hard falls. These occur without warning – and until you train yourself on how to fall in such a way that you do not harm your body or head, trips to the ER are to be expected ... A cracked skull requiring staples to close it, concussions, deep bruises that make any movement painful - all become regular occurrences,

As if these physical problems are not worrisome by themselves, compound them with a list of costly medications. These are intended to build your level of carbidopa / levodopa in the brain. Most doctors, relying on combinations of at least four drugs, must always be aware of drug interactions that could be fatal. Even medications have their limits. PD is on the cutting edge of research which has proven to be successful in a majority of cooperating patients. On top of the list of treatments is DBS – Deep Brain Stimulation. This involves brain surgery that identifies the area of the brain that controls movements. on each side of the body. Two probes are implanted in the exact areas; the surgery lasts about 7 1/2 hours for which the patient is awake throughout. About two weeks later, these probes are connected to a 16-lead stimulator, set and is placed under the skin in the upper chest of the; body. Compare this with the first stimulator I received in 2002. It had a total of eight leads; batteries powered it but they only lasted 2-3 years. Then the entire unit had to be replaced, not just the batteries. The new one can be recharged at home once a week and takes 1 ½ - 2 hours.

There are major side-effects of PD that are mental and require professional counseling. A support group with others experiencing the same problems can be beneficial in working through solutions and means of handling common situations. The Fayette County Parkinson’s Support Group was formed with this purpose in mind. We meet the third Thursday of every month in the Randolph Recreation Center from 10-11a.m. All patients and caregivers are encouraged to attend. We often invite guest speakers to address the group on interesting subjects. One such speaker is Loren Rawlings, a graduate of Texas A&M University and a Licensed Professional Counselor.. She began her work with the group by addressing anxiety and depression. Then she progressed to guilt and the different forms experienced by both sides – patients and caregivers. She encouraged each member to document a gratitude journal, naming three good things we are thankful for during the day.

Other guests we have invited include: Rock Steady Boxing, from College Station; Visiting Angels; a speech therapist who gave important advice about taking pills, and speaking clearly and loudly, especially when using the phone; physical therapists; and pharmaceutical representatives who spoke about their companies’ newest products; plus many more.

Our group has bonded together to help each other in the battle we are fighting. If you would like to join us, please call (832) 561-1447.