Parkinson’s Disease Advice From Those Who Have “Been There”

Dr. Gilbert Hosts episode features advice on how to live with Parkinson’s

On a recent episode of APDA’s Dr. Gilbert Hosts, I was joined by four exceptional people with Parkinson’s disease who shared their personal experiences with PD and answered your questions live. Collectively, they have been living with Parkinson’s for more than 60 years. We covered a lot of ground during the broadcast and answered a lot of questions from the audience.

If you missed it, we encourage you to watch the full episode (just click the video below), but for your convenience we’ve listed the questions from the episode below and the answers are timestamped, so you can skip to the ones that interest you most.

Questions from this episode of Dr. Gilbert Hosts

6:30 How do you fight fatigue?

9:17  Do you have tips to improve balance and fear of falling?

10:53 How did you accept the diagnosis and overcome the grief associated with being told that you have PD?

12:59 How fast or slow did your symptoms progress?

14:06 Has deep brain stimulation (DBS) replaced your medications?

15:22 What are your suggestions for staying positive?

17:22 What was the best and worst thing that happened after DBS?

18:12 Does a certain type of exercise help you?

23:30 How have you maintained your speech?

25:19 Any advice to help with insomnia?

28:24 Any tricks to speed up the effects of levodopa?

31:12 How was it determined that you were a good candidate for DBS?

32:08 How does a person decide when to stop or reduce their work?

34:37 Do you keep to a strict medication schedule?

35:59 How do you deal with constipation?

37:00 Any advice to deal with changes in cognition?

39:01 Any advice to improve writing?

42:52 What advice would you give now to your newly diagnosed self?

We had such a robust conversation that we ran out of time to answer every question from the audience. Thankfully our wonderful guests Alice, Dionne, JM, and Pam took some extra time after the episode to answer the questions we didn’t get to, and we’re happy to share those with you now.  

Additional Questions for the Panel

We’ve grouped the questions into categories for your convenience, and also added the name of the person who answered the question, so you know whose advice you’re reading.

Note: these answers (unless otherwise indicated) are not from medical professionals but from people living with PD.  While their advice comes from years of personal experience, you should always talk with your own doctors about any concerns you have or changes to want to make regarding your personal healthcare. In several cases I added to their answers and in those instances, I marked my comments accordingly.

Parkinson’s Disease Progression

My PD seems to be progressing fast. What causes this?

Typical PD progresses slowly. You might have something known as Parkinsonism. – Pam

If you think that you are progressing more quickly than you expect, bring this to the attention of your neurologist. Your neurologist may not think that your progression is different than expected.

On the other hand, if your neurologist agrees that your progression is fast, he or she may consider a different diagnosis. Sometimes, what is thought to be Parkinson’s disease, is actually one of a number of related conditions that could progress more quickly than PD. There related conditions are collectively known as Atypical parkinsonism. – Dr. Gilbert

Cognition & Parkinson’s Disease

Can medicines for sleep, such as clonazepam (Klonopin) and/or mirtazapine (Remeron) impede cognition?

In general, any medication that induces sleep can also dull a person more generally and make him/her less sharp. At some point, you need to weigh the benefits of improved sleep with the potential side effects of the medication during the day. – Dr. Gilbert

No two days are alike with my husband. There are days when he retreats into himself and becomes unresponsive, and the next day he is alert and able to function. Has anyone else experienced this?

PD can be variable. Try to enjoy the alert days to the fullest! Alice

What is the best therapeutic help for cognitive challenges in YOPD?

I have executive function issues myself.  Setting up systems of operation that can be reinforced through repetition is helpful. – Pam

You can read more about Parkinson’s disease and mild cognitive impairment in our fact sheet. – Dr. Gilbert

If you’d like to learn more about YOPD, you might benefit from watching Dr. Gilbert Hosts: Life With Young Onset Parkinson’s Disease.

Fatigue & Parkinson’s

I was just recently diagnosed with PD, but have had fatigue for the last two years and it’s absolutely debilitating. Are there any tips that can be used to help me become more active?

I have found that if I eat particular foods, I have more energy. I eat foods that have antioxidants (berries), healthy fats (avocado), and protein (eggs). Salmon has Omega 3 which is really good for your brain. These foods may help you with your fatigue. – JM

You can read more about fatigue in our APDA factsheet.  – Dr. Gilbert

Dizziness & Parkinson’s

My wife has had Parkinson’s for five years and is struggling with extreme dizziness. Have you any suggestions how to manage this?

If she is experiencing dizziness, then she may have low blood pressure at times. She needs to drink water and add salt to her foods. Talk to her doctor about other strategies. – JM

JM is right – dizziness could be a sign of low blood pressure. As always, discuss any new symptom with your doctor so it can be appropriately evaluated. – Dr. Gilbert

Balance Issues & Parkinson’s

Could you comment on balance issues and fear of falling?

My neurologist has strongly suggested I do physical therapy, but I’ve also enrolled in an exercise group as well as an aquatics class and this helps with balance. I also use a walker for trips to the bathroom at night and a “stand-alone” cane, especially during “off” times. – Alice

Sleep Issues & Parkinson’s

Do any of you have restless leg syndrome (RLS) as a result of Parkinson’s?

Yes—it sounds benign, but it’s a real nuisance. When I had a knee replacement, I worried how RLS would interfere with healing. My doctor prescribed gabapentin and it worked like a charm! – Alice

How do you deal with insomnia?

My doctor prescribed trazadone at bedtime. I hate dependence on drugs but feel that a good night’s sleep is more important. – Alice

What do you do to help the REM Sleep Disorder? This causes me to act out during sleep and not go into deep sleep.

If a person has REM behavior sleep disorder, it does not mean that he/she is not going into deep sleep. Dreaming happens in deep sleep and acting out dreams is only a problem if it causes the person to harm themselves or others. If this is the case, then it might need to be treated with melatonin or clonazepam. Otherwise, making sure that the person is safe (e.g. putting the mattress of the floor) and that the bed partner is safe (e.g. sleeping in separate beds) may be enough. – Dr. Gilbert

Deep Brain Stimulation (DBS) for Parkinson’s

​How do you determine if you are a good candidate for deep brain stimulation? Is it when you are further into your diagnosis with more symptoms, or is it better to do it sooner?

A person who gets good benefit from medication, but the medication effects are too short or are unpredictable, may be a good candidate for DBS. Also, someone who has tremor that is not well treated with medication can also consider DBS. Someone with cognitive decline or significant problems with their balance, may not be a good candidate. So there are many things to discuss with your doctor about whether you are a good candidate for DBS. – Dr. Gilbert

How long is DBS effective?

DBS should continue to help with slowness and stiffness throughout the course of the disease. Sometimes however, other symptoms develop such as balance problems which may not treated by DBS. – Dr. Gilbert

Does Medicare cover DBS ?

Yes, it does. – Dr. Gilbert

You can read more about DBS here. – Dr. Gilbert.

Tremor & Parkinson’s Disease

I don’t exhibit tremors. When might I expect them?

Not everyone experiences PD in the same way, so one can’t confidently predict the onset of any given symptom. I experienced fatigue for a number of years, then—very slowly—began having tremors. – Alice

Did anyone find that PD medication helps with tremors? Or not much at all?

Yes, carbidopa/levodopa can help with tremors, but over time its effects can be variable—and frustrating! – Alice

I agree with Alice. In many cases PD medication helps tremor, although there are definitely people for whom their medication does not help their tremor. – Dr. Gilbert

Rigidity & Other Motor Symptoms

How do you work through when your body becomes stiff? Sometimes it happens when it is less than convenient. Anything that you’ve found to help?

Stiffness is really hard to combat. In addition to optimizing PD medication, funky music helps me the most. I listen to David Byrne’s Moon Rocks.Pam

What can you do when you can’t complete a task, such as bringing a sandwich to your mouth, and no further?

Hold it in a novel way and bring it to your mouth from an angle that you never use. We freeze in habituated patterns but can often override them if we consciously choose a different course – Pam

Parkinson’s Disease Medications

Does anyone have any experience with time-released versus non-time-released carbidopa-levodopa?

I did not find a huge benefit with time-released Rytary®. – Alice

Everyone is so different when it comes to medication response. Sometimes you need to do some trial and error with your doctor to figure out which medication type and timing works best for you. The good news is that there are many different formulations of carpidopa-levodopa as well as other medications for PD these days, so you have options to work with.  – Dr. Gilbert

Have anyone considered the DuopaTM pump?

The Duopa pump is a medication delivery system in which carbidopa/levodopa in gel form is directly and continuously infused into the small intestine via a surgically inserted tube. You can read more about Duopa here. – Dr. Gilbert

Has anyone used a time-released carbidopa/levodopa to help with symptoms during the night and improve sleep?

This is a reasonable strategy that some doctors use. – Dr. Gilbert

Why are some medications so expensive?

Because the drug companies try to recoup their investment. – Pam

Having worked for a drug company, I’d interject that the cost of drug development is far higher than most imagine. – Alice

I live in rural Alaska, and I cannot get to a neurologist. Any suggestions?

There are doctors who provide telemedicine services. Contact our APDA Northwest Chapter who can help connect you to resources and specialists in Alaska. – Dr. Gilbert

Exercise & Parkinson’s

What about golf as exercise for PD?

Do you find that a certain type of exercise helps you more than others?

The most important thing is for you to try to train to your deficit. If balance is your issue, try tai chi, dance, boxing or anything that involves a lot of shifts of weight.  If posture is a problem, try yoga or dance or pilates, etc. – Pam

Hallucinations & Parkinson’s

Please discuss hallucinations

While hallucinations don’t affect everyone, more than half of all patients with PD eventually develop symptoms of psychosis (such as delusions or hallucinations) over the course of their disease. You can read more about hallucinations here. – Dr. Gilbert


What impact has PD had on your/and your partner’s appetite for intimacy and sex?

PD can bring about unanticipated changes in the couple’s physical, emotional, and sexual interactions. Understanding the scope of those changes can help you to maintain your connection as a couple while living with PD. You can read more about intimacy and sex with PD here, and don’t be shy about talking to your doctor about issues you may be having. – Dr. Gilbert

We appreciate all of you who tuned into the live program and for contributing such great questions.

Tips and Takeaways

  • People with PD are often a great source of information on how to live well with this disease
  • You may also benefit from reading a prior blog that features practical tips for living well from people with 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
  • Support and resources aren’t just for the people diagnosed with Parkinson’s – explore our resources for PD care partners as well!
  • If you have a PD-related question, you can submit it to our Ask A Doctor portal

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