A Journey of Living Well with Parkinson’s

Side by Side support groups

Our first Side by Side support groups in Arlington met this week. I want to thank Cathy at Virginia Hospital Center’s Carlin Springs location for offering us this wonderful venue for our new groups. Also, a BIG thank you to Alexandra from Old Dominion Home care for providing munchies and the amazing folding vases with tulips we all received in honor of Parkinson’s Awareness Month. Last but definitely not least, thank you to everyone who helped put this together and spread the word about it!

We first met all together, then split into two groups – caregivers and people with Parkinson’s. We talked about what we would like to do, and agreed that we will have speakers sometimes, but people also wanted plenty of time to chat with each other. We are creating a list of speakers based on people who have offered to visit us, and others we would like to hear from. It was good to hear about the many ways people are staying active, and we learned about some of the opportunities available locally.

What happens (and is talked about) in support groups stays in support groups, but I can share some of the resources with you. This month, one of the things we talked about was vision and I said I would send out a couple of resources:
1)  The first one is a video/webcast from the (national) Parkinson’s Foundation on Seeing Clearly with Parkinson’s: Vision Changes from their Expert Briefing series. Click here to view.
2)  Last year, Dr. John Dresely, O.D. FCOVD visited a couple of our cafes to talk about Parkinson’s Disease: Effect on Vision. Click here for a summary of his talk.

A Journey of Living Well with Parkinson’s

On World Parkinson’s Day, April 11, Karl and Angela Robb joined Dr. Drew Falconer to speak about living with Parkinson’s.
Dr. Falconer spoke from his perspective as a Movement Disorder Specialist and how he can help people with Parkinson’s live the life they want to live by managing their symptoms with medications and other treatments.
Karl Robb’s perspective is as a person living with Parkinson’s for over 30 years. He is active physically by boxing 3 times a week, and active mentally as a Parkinson’s advocate, author, speaker, inventor, photographer, and much more.
Angela Robb, Karl’s wife, spoke from her perspective as a carepartner. She is also an author, speaker and advocate, and much more!

The discussion went back and forth between the 3 speakers and the audience so to keep things in some sort of order, I’ve divided their stories and suggestions by person as well as by topic. I hope you find it helpful.

Karl – Person Living with Parkinson’s
The first symptom Karl experienced was a twitch in his foot when he was 17 years old. He saw 9 doctors in 6 years before receiving his diagnosis. In a way, finally having a diagnosis of Parkinson’s was a relief because it was not something that was fatal.
Karl suggests that if you’re living with Parkinson’s – don’t fight it, work with it. Stay social by joining support groups, cafes, and exercise classes, and find what works for you. Be aware of how stress, sleep, diet and mood can all affect how you live with Parkinson’s. Keeping a journal can be helpful to remember things you want to share with your neurologist.
Parkinson’s gives him purpose and he listed the many things he appreciates about his life – his partner (Angela), family, friends, exercise, meditation, and more . . .

Gina, our hostess at Tall Oaks, commented how positive Karl and Angela are, and how they always leave people feeling more upbeat than when they first met with them. There are many of us in the Parkinson’s community who would definitely agree with her!

Drew Falconer, MD – Inova Movement Disorder Specialist
A Movement Disorder Specialist is someone who first completes their 4 year training as a neurologist, then trains an additional 2 years as a fellow to specialize in Parkinson’s. He talked about the gulf between how doctors should treat people and how they actually do it.

Sinemet (carbidopa/levodopa) was invented in 1968, and until 2000 was the only medication available. When taking Sinemet, peak effectiveness (“on” period) occurs after about one hour, and then is out of the system in about three hours (“off’). It used to be that patients were advised to wait before they were prescribed it because it generally lasts only 5-6 years. Only 3-5% gets to the brain because the blood/brain barrier is strong. Most of the pill doesn’t get absorbed by gut because there’s a lot of competition in the gut. Parkinson’s is a deficiency of dopamine in the brain. The ideal is to fix the deficiency in a smooth predictable way, all the time.
Taking Sinemet can mean taking doses 4 times a day. With new formulations it can mean reducing frequency to 3 times a day. Patients can now take advantage of medications that weren’t available 15 years ago.
A shockingly high percentage of people in studies feel better on placebos. If you believe a medication won’t work, it won’t because the brain is so powerful.

Deep Brain Stimulation (DBS)
FDA first approved DBS for essential tremor in 1995. It runs the rhythm of the brain instead of the heart. It is an electrical problem treated with electrical therapy – programmed by the doctor.
Because it works at the source – the brain – medications can be reduced by 60-80%.
Anyone with cognitive issues or any uncontrolled psychiatric illness is not a good candidate.
The only requirement is that the patient has experienced symptoms for 4 years. Age is no longer an issue – Dr. Falconer’s oldest patient is 86 years old.
Risks: 1% experience some type of bleed. Only 1 patient out of 180 of Inova MDS patients experienced infection, possibly because of lifestyle choices made that were not recommended.
Until 2017, Medtronic was the only manufacturer for the device. Now St. Jude, Boston Scientific manufacture devices and there have been no issues with breakage and slippage.
Rechargeable batteries are not recommended because after 6 months to 1 year of recharging every few days, the patient may have to recharge for one hour/day. Non-rechargeable batteries should last 5-7 years, and are changed in a 30 minute outpatient procedure.
Improvements as a result of DBS are that it can reduce medication dosages by 80%, and make the tremor go away (Parkinson’s and essential tremor, too). Speech & balance issues can be helped with proper programming. It can also reduce depression.
Focused ultrasound is lesioning, and permanent. Michael J Fox had it done years ago. It can only be done on one side of the brain.

Visits with a neurologist
Dr. Falconer will ask his patients, “What is holding you back from living your life?” His first question when a patient visits is, “Have you done anything fun since your last appointment?”
He suggests that people think about what they want to do with their lives – find what makes you happy. Tell your doctor what is bothering you, rather than relying on what the doctor thinks is bothering you.
Don’t be afraid to get a second opinion because another doctor can provide a different perspective.
A doctor shouldn’t just talk to the patient – the discussion should include the caregiver, too.

Inova Movement Disorder Specialists (MDS)
Inova does not have a policy allowing patient to record visit with doctor.
Dr. Falconer will respond to emails and phone calls from patients.
While the Inova MDS may see 14-18 patients in a day, other neurologists may see 20-25 patients in a day.
There is a team at each INOVA MDS center that includes the Movement Disorder Specialists, a nurse navigator, therapy featuring LSVT BIG and LOUD programs, inhouse geriatrics, psychology, neurosurgery, and more.
Two new doctors will be joining the Inova MDS program, and new offices at Fair Oaks & Gainesville are opening soon.
Dr. Falconer recommends exercise and physical therapy. When someone doesn’t exercise, they can require more medications (40%!) and it’s easier to become wheelchair-bound.

Angela, Carepartner
Angela talked about how carepartners or caregivers need to be proactive, and be part of a healthcare team. Angela often says, “Self-care isn’t selfish”. She takes care of herself by going to the gym in addition to reiki and meditation. She commented how she felt an improvement from going to the gym. Her advice? Don’t stop living your life, and push yourself in exercise.

While the panel was talking about how Parkinson’s is unique to each individual, Amy who was sitting next to me, said that people with Parkinson’s are like snowflakes. I hadn’t heard it put that way before but I liked the comparison. What do you think?

Hope to see you Out & About soon! We have two cafes this week in Alexandria and Fairfax. Both cafes will have special goodies provided by Old Dominion Home Care in honor of Parkinson’s Awareness Month. Will we see you there?

email: Sonia@ParkinsonSocialNetwork.org

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