Parkinson’s Support Group Discussion. June 22, 2021

Things I used to be able to do but cannot do now. 

The group had an inspiring discussion. Folks are recognizing that the things they used to do effortlessly, now required more effort. In fact, some things required a lot more effort and rethinking. This evolved into a discussion about what it means to let go, how does acceptance play out in one’s life, and the recognition that there is a fine balance of tension and release that is needed to be able to maintain optimal mobility for the individual.  

Furthermore, the group discussed “when is the right time to get in-home help”? One wise person once said, “if you are thinking of needing help, then you need help”. There is some reluctance to use the term caregiver and one attendee said they prefer the term delegation. Think of delegating tasks that you either no longer want to do, or have some challenges doing. These could be related to garden care, cleaning in the home, washing, handy tasks etc… Think about what it means to have paid professionals come into your home to assist you. You can start small, add different “modules” over time. Maybe having a professional come and do physical therapy or exercise with you in your home as a way of getting used to sharing intimate space with a professional.  

In conclusion, those in the group who have “delegation professionals” coming into the home, report after a transition time, that they look forward to having things done by others. “We’ve earned it” and “we’ve worked hard all our lives” are a couple of the quote’s folks have said once on the other side of acceptance. 

Help! They have fallen, and I need help getting them up! 

The group also discussed what it means to have the fire department come out to the home to help an individual when they have fallen. It is something that can happen often, particularly with those living with a movement disorder. The discussion included what it might look like to have an age oriented medical service in Island County, one that delegated those kinds of needed responses to a third-party contractor, making it a less expensive and more widely known service. This may be a continued discussion moving forward.  

Who is that person in the mirror? 

There have been ongoing discussions about how the person we are inside is not reflected in the mirror or by the world at large. It is as if there are two things happening, the journey of our body and the inner journey of who we feel or think we are. Often there is a collision of thought from the outside world treating us in ways that do not align with our inner view. Feeling like we must adjust who we think we are because our body and the subtle, and not so subtle feedback we receive from others seems to be forcing us to. It can be disheartening or even down right depressing when we feel like we are forced to adjust who we think we are. There may even be some common ground here with our transgender community members. This has been spoken about in relation to Parkinson’s Disease and aging and is something that might be worth more discussion. Am I my body, or am I who I think I am? How much does one influence the other? Is it something that I have control over? 

Comfort and ease of dressing.  

One attendee shared this link for shirts that use magnets instead of buttons. This would be helpful for those who experience tremors and would like a button free option. 

How can I get connected to resources? 

There was discussion about needing access to an Occupational Therapist to help individuals understand the best and safest ways to assist an individual with Parkinson’s Disease make transitions from sitting to standing, getting into bed, etc. For more information on this, please contact your case manager if you are already connected to Island Senior Resources, Family Caregiver Support Program, or call 360–321–1600 and ask to be referred to an Aging & Disability Resource Specialist. Once you get connected, ask them if they can assist you with getting help from an OT. The other option is to ask your support group facilitator (Mel) to share your information with Aging & Disability Resources and Mel will get you in contact with a specialist.  

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Who is ISR? 

Island Senior Resources is the trade name for Senior Services of Island County. We provide essential resources for seniors and adults with disabilities, their families, and caregivers, throughout Island County. We are the only private nonprofit in northwest Washington that provides the array of resources we do. Established in 1972, Island Senior Resources is a private 501 (c)(3) not-for-profit organization. 

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