My Parkinson’s Do Over List

I am often asked what I would do differently about Parkinson’s disease (PD) if I could go back in time. Having spent some time thinking about this, here’s my Parkinson’s do over list in the form of advice I’d give my younger self.

Don’t wait to take action

When you first notice symptoms like tremors or loss of smell, do not sit around dithering. Get an appointment with a medical professional who has a specialty in neurology. Parkinson’s has a better outcome the earlier you are diagnosed.

Accurately diagnosing PD can help people receive the proper care. When Parkinson's is diagnosed early, treatments like levodopa/carbidopa are more effective. I wasted several years wondering about my new symptoms and then wasted several more years with a misdiagnosis.

Try not to waste time in denial

A Parkinson’s diagnosis is most likely devastating news. You may not have even heard of Parkinson’s before hearing those words: "You have Parkinson’s." Being advised there is presently no cure is also a shock.

It’s ok to get a second opinion as Parkinson’s is difficult to diagnose. Getting treatment as fast as you can is the best course of action. I spent about 6 months researching and trying to convince myself I had some other disease.

A hard message to swallow

Parkinson’s is, in all likelihood, not going to kill you. But what you do about it will help determine how long you live and affect your quality of life. Doing nothing will shorten your remaining years and negatively affect your quality of life.

Parkinson’s related depression, anxiety, and apathy will often make you feel like doing nothing. You have to fight the apathy, depression and anxiety. They lessen your quality of life.

Join a Parkinson’s exercise class

While medication may help with symptoms, exercise has proven to stop the progression of symptoms or even relieve symptoms. A Parkinson’s exercise class led by a qualified instructor has several advantages. A specific set of exercises have been developed to improve range of motion, rigidity, and coordination.

Exercising with other people who have Parkinson’s is an additional motivation to exercise, beneficial socially, and provides a safe environment to share Parkinson’s concerns and issues. If you can’t find a class near by, try an online class. You will need more exercise in a week than just the Parkinson’s exercise class.

Form your treatment team

To paraphrase, "It takes a village to treat Parkinson’s." PD is a very complex disease to treat as it has the potential to involve almost any muscle and organ in your body.

Johns Hopkins recommends, in addition to your primary care, a neurologist, a physical therapist, a speech/occupational therapist, a mental health therapist, and any other needed specialist, form a team to coordinate your treatment.¹

If you live near a movement disorder center, a neurologist specializing in Parkinson’s should lead your team. 

Join a support group

Your local Parkinson’s support group offers education and support. Monthly meetings provide social opportunities and a safe place to discuss all things Parkinson’s.

Adapt to change

Above All, plan on being flexible, adaptable, and accept change. Parkinson’s will come at you in multiple different ways. As soon as you get comfortable, you will get a curve ball. Being flexible and adaptable will help in navigating PD. Learn as much as you can about coping skills and which work better for you.

Be open to new hobbies and mastering new skills as Parkinson’s may well interfere with old hobbies. Keep your mind and body as busy as you can. Your life plan may be changing but by being positive, finding new hobbies and skills, and being flexible, you will be able to have a good quality of life.