Blog
No one fully understands what your caregiving situation is like for you. No one. Not even other Parkinson’s caregivers; and ironically but maybe especially, not even the person you are caring for. Just as no two Parkinson’s “cases” are alike, no two caregivers, caregiving relationships, or caregiving situations are alike.
One of the most common questions from family members of people diagnosed with Parkinson’s disease pertains to when and how to get help at home for caregiving support of a loved one. Often people diagnosed with Parkinson’s disease and their loved ones struggle with knowing when to add support at home for everyone, and there are many complex and unique concerns for each family regarding their support system and life at home. There is not a “one size fits all” model for support at home, but there are some general benefits to adding support sooner than later. If you or your loved one are starting to wonder when to add support, it may be time to begin to plan to add support.
Almost five years ago I retired from a 35-year career in telecommunication sales and began in earnest to design the rest of my life. I had always planned to include a component of “giving back” to the community and started a search for a not-for-profit organization that could benefit from my experience in business.
In the Navy we had an acronym that was thrown around pretty commonly; K.I.S.S. (Keep It Simple Stupid). Now let me start by saying I do not say this to my clientele but, I do use the same basis for my training and advice outside of my facility. “Keep it simple, Keep it safe” are words that come out of my mouth MANY times a day.
Five years ago, when I was diagnosed with PD, I wrote an article for the PSW newsletter. The tile was “My New Reality”. I expected the diagnosis, as our son had been dealing with Parkinson’s for about 15 years, and as a volunteer with the Parkinson Support & Wellness Organization, I had many opportunities to learn about PD. I knew too much about the symptoms I was experiencing. At least I did not have to deal with denial.
In September, 2013, I was at a church festival and Rob, a friend of mine, was watching me walk across a field. I was really limping badly, and he realized he had never really noticed how I walked. For the first time, He Saw Me Walking, and he decided to ask me why I had so much trouble. I told him about dystonia and he told me that he was aware of a device that might help me walk normally.
No one fully understands what your caregiving situation is like for you. No one. Not even other Parkinson’s caregivers; and ironically but maybe especially, not even the person you are caring for. Just as no two Parkinson’s “cases” are alike, no two caregivers, caregiving relationships, or caregiving situations are alike.
On race day you can find me running around, eating a goetta slider, or with my team Snags Snails. I've often been asked what that name means: Snag is a nickname that my Dad received as a kid after receiving a snaggletooth in a sledding accident, and Snails just felt appropriate because we are NOT a running family.
What is “the best” exercise for Parkinson’s Disease? Of course, I am going to tell you my program is, or many of the classes taught by my instructors at Parkinson Community Fitness or Coors Core Fitness. But, you could also say the best exercise for PD is whatever research says is the best exercise at this moment in time.
In late 1998 a friend was visiting at my home when my husband came home from work. She asked me if he had had a stroke as he seemed to be pulling his left leg forward more than stepping by leading with his knee. Several months earlier he had started a new job which required him to drive back and forth weekly between northern Ohio to be with our daughter and me on weekends and to Cincinnati where he worked Monday through Friday. I hadn’t noticed his altered gait.
More than 12 years ago, Mark Schroder, then a board member of Tri-State Parkinsons & Wellness (TPW), a predecessor to Parkinsons Support & Wellness (PSW), asked me to join the board of directors of TPW. Mark knew that my late father had Parkinsons so he expected I would be interested in working with TPW. As TPW has evolved into PSW, I have had a wonderful and rewarding experience serving on these boards.
Eighteen years ago, when my husband was first diagnosed with Parkinson’s Disease, he forbade me to tell anyone for two years. He argued that it was his disease and therefore his story to tell at the time of his choosing. The fact that Parkinson’s Disease had happened to him was clear, but it had happened to me, too. It had happened to us.
The group for newly diagnosed Parkinson's patients continues to be a success story. I am forging ahead with a proposed regular date and time, and several participants have said they are looking forward to continuing the group. I also was contacted by a local physical therapist who has two newly diagnosed patients interested in joining a group. I never thought I would be in a leadership role, but this is one gift that Parkinson's has given me.
