Wisdom & Advice from People Living with Parkinson’s Disease
The voice of our Parkinson’s disease (PD) community is vibrant and full of excellent advice. And we know that hearing from those who have “been there” can be particularly helpful. For this article, we specifically consulted those who have more than a decade of experience with PD to tell us what advice they would have given their newly diagnosed selves, advice that can benefit others who are currently navigating a new diagnosis. Here are their answers which were lightly edited for space and clarity. Remember that everyone experiences PD a bit differently, so certain tips and advice may be more relevant to some than others.
Looking Back, What Advice Would You Give Yourself?
• Retire sooner! That relieves you of work stress and trying to find time to get moving and exercise. It also lets you travel and do all the other things that you want to do. — Larry D.
• Parkinson’s disease has been with me for twelve years. Acceptance of the disease and exercise are keys to the new lifestyle. Paying close attention to the timing of the medicine(s) is essential. Select a neurologist who has a staff of speech, physical, and occupational therapists. Continue to eat healthy. Support groups are helpful. — Kay G.
• I am now 42 years post-diagnosis. The best movement disorder specialists and participation in many clinical trials kept me going, but I did not know about the benefits of exercise and regretfully continued to live a normal sedentary life for many years. That did not serve me well as my symptoms progressed. — Anonymous
• Wish I’d found my current doctor at the beginning! — Mary V.
• Three things come to mind — The single most important thing we (my husband, and care giver) did was to join a support group. You will be able to listen to others relate their symptoms which can be different than your own. There will also be presentations by doctors and other specialists on any and all related subjects. Also, it is true what they say about EXERCISE – DON’T STOP! I found that as I aged, Tai Chi helped my balance. Then I stopped. That was a very huge mistake. I am finding it difficult to make any progress. Dizziness and falls have become a problem in my 81st year. Five years ago, I underwent deep brain stimulation (DBS) surgery. I feel it was the right decision for me. If your neurologist does not discuss it with you, ask about it. And finally, go dancing whenever and wherever you can!!! And don’t stop singing! — Becky S.
• We don’t know the cause of PD and consequently, we don’t have a cure. We do know it is a progressive disease and its progression, while unique to you, will either be rapid, moderate, or slow. For each visit with your doctor, you should ask questions about your symptoms and thereby determine how rapidly you are progressing. Also, read everything you can to help you understand your destiny. — Robert B.
• I was diagnosed in July 2006. When your balance starts to fail, your falls can get worse. This can be dangerous, so make sure you talk with your doctor about this. — Tom W.
• I was diagnosed with PD about 12 years ago. I wish that I had started a rigorous program of exercise and flexibility training IMMEDIATELY upon diagnosis. A Parkinson’s-specific exercise class is good for getting input from others. I would also make a bucket list of things I wanted to do and start doing them. Keep a positive attitude! — Robert H.
• My father was diagnosed with PD by his Primary Care Physician in 1993 at age 78. Initially, he was prescribed medication, but it did not help. I then took him to a movement disorders specialist who prescribed the same medications, but in a different way – ramping up slowly. The results were amazing in that my father was a new man and lived comfortably with that regimen for five years. He died at age 86 (in 2001) but I’ve never forgotten the importance of knowing how the drugs should be best administered. Seek out a movement disorders specialist who deals with these diseases on a daily basis and is on the cutting edge of knowledge for the best results. — David V.
• I started having symptoms at age 58, but I was not diagnosed until I was 64. I would encourage people to keep an open mind about using antidepressants. I never thought that I would need one until I started having clear signs of depression – something I’d never had before. I now know that it is very common in Parkinson’s and highly treatable. The second thing I would emphasize and cannot stress enough is the value of movement and exercise. Try to remain aware of the need to keep moving. When I sit down, I promptly get up and go for a walk or pick some sort of chore or project to do to keep myself moving and busy. Every little bit of movement counts. — James N.
• If I were diagnosed today, or could turn time back 15 years, I would focus my attention on: 1. Fast walking at least a mile and a half every day. 2. Reducing sugar in my diet. 3. Learning the vocabulary needed to make informed choices on medication and dosing of medication. — Patricia K.
• If I could go back to when I was newly diagnosed, I would tell me: Do not be afraid of the future. Don’t dwell on what could be. Rather, focus on what you have. Keep moving, keep working as long as you can, and participate! Participate in your care, participate in research, and participate in a daily exercise routine, even if it’s just walking. Understand that it’s OK to visit Pity City – just don’t take up residence. Be you. Don’t allow Parkinson’s disease to define you. Remember that you don’t “have” PD. You will live and thrive despite Parkinson’s. Finally, there will be a time when you need help. It’s okay to ask for it. For the past 22 years, I get out of bed, (sometimes a challenge in and of itself) stand up straight and say to myself, “At least you are on the right side of the grass.” –– Clare A.
Tips and Takeaways
- Small changes in your routine can have a big impact on quality of life in PD
- Joining a support group is a good way to hear about the strategies that others use to overcome the challenges of life with PD, and share some tips of your own
- Exercise and increased movement should be an important part of your PD care and treatment plan.
- You can hear about more helpful ideas in our recent conversations with Dr. Joseph Friedman and Erin Foster.