My Wife Has Parkinson Disease:What Should I do?

Michael Fox and Mohamed Ali

Six months ago, my beloved wife of 56 years( Macrine) was diagnosed to have first stage Parkinson disease, commonly called PD. She has been experiencing typical symptoms of the malady with involuntary hand tremors, slow body movement ( walking), unbalanced gait, softer voice, difficulty swallowing and had a couple of falls during the previous year. We have to purchase a cane, to prevent another fall. Our doctor prescribed her Sinemet ( 25/100 carbidopa/levodopa) to be taken twice a day. Her first two weeks after taking the drug, she suffered nausea, vomiting, hallucinations and disturbed sleep, but her hand tremors stopped. As of today she is taking the drug twice a day and the nausea had stopped and the hand tremors controlled. She still walks very slow and her voice is very low and have a hard time swallowing. She needs my assistance in changing clothes, bathing and slicing her food into small pieces. She easily gets tired and from what I read in the Internet, there will be a time when the drug will no longer be effective. In the future as the disease progressed she will need palliative care and home nursing assistance. My wife's PD has a genetic component. Her father had PD and one of her aunts on her maternal side had also PD during their senior years.

Today, I called my Federal Insurance provider Blue Cross-Blue Shield-Anthem of California. The benefits coordinator informed me that home care visits are limited to only 2 hours per day and 25 visits for the calendar year. It has to be authorized by a licensed physician. I have a deductible of $350 per year with the insurance paying only 65% of the cost.

Currently, I am reading two books on PD which I found useful as follows:1). I have Parkinson: What Should I do? By Ann Andrews, Basic Health Publishing, 2011 and 2). Ask the Doctor about Parkinson Disease by Michael S. Okun and Hubert H Fernandez, Demos Health, 2010.

The following information from the National Parkinson's Foundation, I found very informative .

In the United States, 50,000-60,000 new cases of PD are diagnosed each year, adding to the one million people who currently have PD. The Center for Disease control rated complications from Parkinson’s disease as the 14th leading cause of death in the United States. Worldwide, it is estimated that four to six million people suffer from the condition. There is hope, however, as scientists work towards a cure and make progress in identifying the best treatment options for patients.

Parkinson’s disease (PD) is a neurodegenerative brain disorder that progresses slowly in most people. What this means is that individuals with PD will be living with PD for twenty years or more from the time of diagnosis. Parkinson’s disease itself is not fatal, but complications could occur and can cause death. There is currently no cure for Parkinson’s; however, investigations on animal models, gene therapy and stem cells research are undergoing so those with PD can have a good quality of life.

Treatment approaches include medication and surgical therapy. Other treatment approaches include general lifestyle modifications (rest and exercise), physical therapy, support groups, occupational therapy and speech therapy. Recent studies have indicated that a treatment is better than no treatment. In other words, medications and therapies may modify the progression of Parkinson’s disease. Michael Fox and Muhamed Ali are the two world famous personalities known to be suffering with PD.

Do you have a relative with PD? Were you the primary caregiver? Could you share your experiences as a caregiver?
Reference: www.parkinson.org ( National Parkinson Foundation)