Many with Parkinson’s living active and fulfilling lifestyles despite disease

When people think about Parkinson’s disease, many think of Katharine Hepburn, Muhammad Ali or Michael J. Fox.

Hepburn actually had essential tremor, not Parkinson’s. They look similar, but there are significant differences.

For example, Parkinson’s usually causes tremors at rest, while essential tremor usually causes them when moving. Most importantly, they have different long-term implications and respond to different treatments.

In Parkinson’s disease, dopamine-producing brain cells deteriorate. Dopamine affects communication between parts of the brain that coordinate smooth, balanced muscle movement. There is some controversy about what causes the dopamine production problem, but it is likely that anything that can hurt the brain may also damage dopamine-producing cells. This can include head injury, blood vessel damage in the brain (including stroke) and street drugs. However, there are also genetic factors and unknown causes for Parkinson’s.

Parkinson’s can be difficult to diagnose, and symptoms vary. Some people have been told that Parkinson’s is not the problem because they lack a typical tremor or because of their age. For two people I know, this delayed their diagnosis and treatment. I recommend finding a provider experienced with Parkinson’s.

Many people do not like taking medicine on general principle. This is an acceptable position when it comes to some medications, but it is not necessarily a good idea in Parkinson’s treatment.

Specialists and people with Parkinson’s agree it is important to stay active, which is extremely difficult if you do not have enough relief from symptoms, relief that is best achieved with medication.

Someone who resisted medication for the first year after her diagnosis had this to say once she tried taking medication:

“What was I thinking? Meds are just part of the deal.”

If you do decide to take medication for Parkinson’s symptoms, take them exactly as prescribed and talk with your doctor if you feel they need to be adjusted.

Many people I know with Parkinson’s wish they had known earlier that:

• Stress aggravates it.

Sometimes you freeze. Your brain is telling your body to move, but the message is not getting there. Allowing time for it to pass makes this easier.

Patience is key for everyone involved, including caregivers, friends and family. Doing things just takes longer than expected.

• Parkinson’s can affect your memory and your personality.

Sometimes the disease will respond less well to medication over time, or there may be side effects from medications. After 20 years, my friend’s father was not seeing the benefits he used to have from medication, so with his doctor he decided on a treatment called deep brain stimulation.

He now takes less medication and has seen improvement concerning his tremors. The treatment involves having brain surgery to implant a small device. It is not without risks, so the pros and cons should be thoroughly weighed and discussed before having this treatment.

Read in depth about Parkinson’s by searching on the Internet for the websites of the National Institutes of Health, the Parkinson’s Disease Foundation, the National Parkinson Foundation and the American Parkinson Disease Association.

Learn about clinical trials for emerging treatments for Parkinson’s at www.clinicaltrials.gov.

There is not yet a cure for Parkinson’s, but my friend’s father has had it for over 20 years, and he is still very active, as are many of my patients with the disease.

It may be that with time some find the need to ease up on or give up an activity, but as long as people continue to enjoy activities and do them safely, most plan to keep on going.

People with Parkinson’s stay active through yoga, bowling, sewing, jewelry making, public speaking, walking, baking, painting, writing, sailing, horseback riding, gardening, playing a musical instrument, home improvement and volunteering.

You name it, people with Parkinson’s are doing it. They might be doing it more slowly on some days or breaking for a rest more frequently, but they are not letting the disease stop them from doing what they enjoy.

You can read about people’s daily victories, and share your own, at www.proudhands book.com.

Muhammad Ali lit the Olympic torch in Atlanta in 1996. What are you going to do today?