Parkinson's Disease Caring Podcast

On this episode, Dr. Klos answers your questions regarding Parkinson's disease. Thank you for emailing your questions for today's show. 

If you would like to submit questions for a future show, please email them to [email protected]. 

Thank you for listening to episode #9. If you would like to find more resources for care partners and caregivers for loved ones with PD, please check out www.pdcaring.com. 

Many Parkinson's disease experts have suggested that one of the leading causes of disability for Parkinson's disease patients is the fear of using levodopa (dopamine) therapy by the healthcare provider and/or the patient. This fear stems from myths and misconceptions pervasive on the internet, in medical clinics, and support groups. This fear has resulted in patients unnecessarily delaying this important therapy or limiting the dose which may under treat the motor symptoms of the disease. 

On today's episode, I discuss some of these common myths and misconceptions to help the care partner and caregiver understand the truth about levodopa. Hopefully, with this information, you will be prepared to encourage your loved one to receive the optimal results from this gold standard treatment so that your loved one may achieve the best possible quality of life. I encourage you to lead your loved one to discuss therapy options further with their health care provider to find the best treatment solution for them. 

As a care partner or caregiver for a loved one with PD, you have certainly by now heard the importance of exercise and therapy for your loved one with PD. Why is it so important for your loved one? Does exercise only benefit physical symptoms? Is there evidence that exercise might slow the progression of PD for your loved one?

Additionally, are you exercising? If so, are you consistent with your exercise program? Are there advantages to regular aerobic exercise for your brain health?

Tune in to the episode to learn more about this important topic! 

Exercise and balance therapy are important interventions in the treatment of Parkinson's disease. But what exercise should a person with Parkinson's disease perform? How often and for how long? Should the carepartner and caregiver engage in regular exercise as well? These are some of the many questions I hear in the PD clinic from patients and caregivers. 

As PD advances, what issues related to fall risk should we be aware of as a caregiver? Is there a point in the progression when Physical Therapy should no longer be considered? Are there new devices and technology that may assist my loved one? 

On today's interview, we dive into these questions with an expert on PD therapy and balance rehabilitation. Keith Khoo has over 34 years of experience treating PD patients. He is a balance therapist and utilizes many of the newest technologies to help people with PD reach their therapy goals. He is regularly involved with caregivers and leads support groups as well as group exercises classes that benefit both patients and caregivers. He provides wonderful advice that will benefit carepartners and caregivers caring for a loved one with PD. 

Caregivers for loved ones with Parkinson's disease experience guilt. There are many reasons why a caregiver may experience guilt along the journey and the severity of the guilt certainly varies. For example, caregivers may feel guilty when taking time away from their duties to pursue personal time. You may feel guilt when you compare how you are handling certain situations to other caregivers. Caregivers may struggle with balancing demands on their time from other personal responsibilities or health problems. 

One of the most difficult situations that Parkinson's disease caregivers face is the decision of placing their loved one in a living center for higher level of care. Alice faced this decision and experienced tremendous guilt from her own internal feelings about the decision as well as from her husband's comments and behavior regarding this life change. Alice offers great advice for dealing with this important decision and how she finds peace in her life. 

Alice is a caregiver for her husband with Parkinson's disease for the last 34 years. This is part one of a two part interview discussing her experience navigating the care partner and then caregiving role. She provides helpful advice to build confidence in your caregiving role. 

There are many elements that Alice shares requiring the interview to be broken into two episodes. This episode focuses on helpful advice in dealing with the changes that Parkinson's disease brings to a family. On the next episode, learn more about guilt and her difficult decision to decide between caring for her husband at home or considering a nursing home placement. 

As always, we greatly appreciate our guests willingness to share their story and experience with us as well as offering advice that hopefully will help the listener in their journey. 

A common complication of Parkinson's disease is off episodes related to levodopa therapy. After many years of taking levodopa therapy, an individual with Parkinson's disease may experience off episodes in which the benefit of a dose of levodopa therapy may fade resulting in the return of Parkinson's disease symptoms. For some patients, the off episodes are mild and non troublesome. However, for most patients, off episodes are troublesome due to discomfort of symptoms or loss of function. 

On the show today, learn more about off episodes and possible treatment options. The show will focus on the newest treatment available for off episodes named Kynmobi. Kynmobi is a sublingual film that provides a rapid rescue for patients experiencing off episodes. The medication was FDA approved in May of 2020. Many patients and caregivers are unfamiliar with this treatment option. I will provide you with helpful advice and hints from my clinic experience using this product as well as my experience using this medication in clinical trials. 

It is important to consider all treatment options for off episodes and to work with your loved one's healthcare provider in finding the best treatment for their individual needs. This show is not designed to treat individual patients but instead to educate care partners and caregivers about off episodes and a new treatment approved for this problem. Become a more confident and informed care partner or caregiver by listening to the show. 

There are many reasons why patients with Parkinson's disease may choose not to participate in a clinical trial. Many of these reasons may not be valid reasons due to misconceptions about PD clinical trials. Although clinical trials are not ideal for some patients, this episode explores why your loved one with PD might wish to consider participation in a trial. Learn from care partner Joe and his wife Barbara from their experience with a PD clinical trial and how this decision impacted her treatment plan. Joe and Barbara offer valuable advice to the care partner. This is a conversation that you just don't want to miss! 

Learn more at www.pdcaring.com

Movement Disorder and Parkinson's Disease specialist, Dr. Kevin Klos, previews his new podcast for Care Partners and Caregivers with loved ones battling Parkinson's disease. Dr. Klos is also a care partner for his mother who was diagnosed with Parkinson's disease. New episodes will be produced every week. His episodes will vary between interviews with current caregivers and patients in his clinical practice, Klos clinic shows that provide quick updates on new medications and therapies for Parkinson's disease that are free of commercial bias and influence, and question and answer shows designed to answer the most common questions from caregivers in his clinical practice. 

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