Erica DeMarch, PT Interviews Us for Podcast
Erica DeMarch is a physical therapist specializing in neuro- and vestibular rehabilitation, in particular, the study of balance. Her website www.stepandconnect.com features informative podcast interviews with health experts who share their knowledge on balance. In honor of Parkinson’s Awareness Month in April, Erica conducted a series of podcast interviews with leaders in the field of Parkinson’s disease discussing the latest science and treatment methods for balance-related issues. For the final guests in the series, Erica interviewed Betsy Vierck and Catherine Ross, two of the writers for the blog Parkinson’s From the Inside. This episode offers a unique perspective from individuals who live with Parkinson’s every day.
At this point, readers may choose to-
1) Click here to go directly to our podcast interview.
2) Another option is to continue reading the summaries of the topics discussed in our interview before listening to the podcast.
Interview topics:
What the title of our blog, Parkinson’s From the Inside, means to us.
Our point of view is from our personal experience with Parkinson’s. We focus on our emotions, and what’s happening on the inside, as we live with Parkinson’s.
Writing helps us process our feelings, and we hope to raise awareness of Parkinson’s by sharing our writing with readers.
The three authors bring unique perspectives since we have each been living with Parkinson’s for varying lengths of time.
Our blog is eclectic since each of the authors has different approaches and experiences.
Information we would like health care professionals to include when we are first diagnosed with Parkinson’s, including standards of care.
A diagnosis of Parkinson’s is often loaded with emotion and fear. It is a life-changing event. The person delivering the diagnosis is often speaking to someone who may be in shock and who may remember very little of the conversation beyond “You have Parkinson’s.”
We promote the idea that soon after diagnosis, every new Parkinson’s patient should be scheduled for a follow-up appointment with a medical professional knowledgeable about Parkinson’s. This discussion should involve the use of everyday plain language to answer questions and develop a treatment plan.
Parkinson’s is a demanding complicated disease. Understanding our disease is key to survival and quality of life.
People with Parkinson’s should have access to Movement Disorder Specialist Neurologists as general neurologists rarely have their specialized knowledge or experience.
People who are newly diagnosed should receive referrals to physical therapists, speech therapists, support groups, and other relevant professionals which may include grief counseling.
During each visit with the Movement Disorders Specialist neurologist, it is important to discuss the necessity of ongoing physical, speech, and occupational therapies, and an exercise program.
The importance of therapies.
Many people find that goal setting provides clarity and hope.
Regular exercise is key to living well with Parkinson’s. We believe that goal setting should include specific, functional outcomes. For example, specific exercises for building balance, strength, cardio, endurance, and flexibility may address goals of decreasing falls or increasing the number of blocks we can walk per day. Another example is a series of exercises with a speech therapist to improve safe swallowing of food or liquids.
Consistency of therapy is important.
Regular check-ups (every six months) with physical, speech, swallowing, and occupational therapists are advised.
The importance of open and consistent communication between people with Parkinson’s and health professionals.
It is common for individuals with Parkinson's disease to hide their symptoms as others may feel uneasy when they can see symptoms. We call this "faking wellness," and for some people, this may come from denial.
It is important that people with Parkinson’s are honest with health professionals.
The health professional can ask direct questions such as “are your symptoms different later or earlier in the day compared to your symptoms observed now, during this appointment?”
Keeping a diary and jotting down notes about symptoms can be beneficial for individuals living with Parkinson's. This way, they can easily analyze the recorded information and report their observations during their visit with a healthcare provider.
Frequent communication between people with Parkinson’s and their team is key to successfully living with the disease.
Other than a cure, our dreams for the future of Parkinson’s treatment.
Reduce the stigma of Parkinson’s Disease
Parkinson's disease is often incorrectly assumed to only affect the elderly, even though it can occur at a young age. Unfortunately, there is also a stigma regarding aging and the elderly.
We would like to see public information about Parkinson’s featuring a more positive image. An example is a picture of people playing pickleball.
We would like to raise awareness of Parkinson’s, and increase empathy and acceptance.
We wish there was a dream pill that could be packed with all the medication we need for the day, and could be taken once in the morning so that we don’t have to live our days by counting the hours until our next medication dose.
Explore creativity.
We recommend that people with Parkinson’s explore the expression of emotions they experience by finding a creative outlet.
We believe this creative expression contributes to a fulfilled life, especially given this dramatic and challenging diagnosis.
We love writing and sharing our writing, and each of us also enjoys other creative outlets like crafting or painting.
Tips for living our best life with Parkinson’s.
Attending support groups provides educational opportunities and camaraderie.
Mentoring is a gift that you can give others and that you receive from others.
Start exercising and keep exercising. It is important to start exercising and maintain a regular routine.
Although some of us have not always enjoyed exercising earlier in our lives, now it is imperative that we exercise as this has been shown to slow the progression of Parkinson’s.
Some may prefer to exercise alone, while others may prefer to join classes specifically designed for those with Parkinson’s, such as Rock Steady Boxing.
Now that you have read our summary of the interview, we hope you listen to this podcast as we cover many more details. Additionally, you may want to explore Erica’s website www.stepandconnect.com where you can find other podcasts related to Parkinson’s and balance. We hope this additional information is helpful.
Click here for our Podcast Interview with Erica DeMarch.
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