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Back to Dance with End Stage PD
July 7, 2014
Back to Dance with End Stage PD

Posted by Peggy Whitbread

Joe and his daughter at her weddingJoe and I had been regulars at the JF&CS Parkinson’s Family Support dance class for close to two and a half years. We started at my prodding Joe into just giving it a try for one or two weeks and ended up planning life, including doctor appointments, around Wednesday morning outings to Waltham.

Little did I know just how important not only Wednesday PD Dance but the Parkinson’s disease (PD) support structure at JF&CS would become to me as Joe’s caregiver. I soon became a regular at PD Care Partner Support bi-monthly meetings. I also became a client of Your Elder Experts geriatric care management program when I needed guidance, support, and advocacy in placing Joe in a skilled nursing facility for long-term care.

By the end of Joe’s rapid decline in health from July 2013 to October 2013, Joe was down to 123 pounds from an overweight 196 pounds the July before. He was presenting as 5th stage Parkinson’s: bed and wheelchair bound, unable to transfer from one to the other with even a two person assist, and unable to feed himself or hold a utensil. Suffice it to say things looked very bleak for my 69-year-old husband, and he entered hospice care.

But this month, we returned to PD Dance at Joe’s request. How are we back? Prayer; placing Joe in a facility open to learning about how individual PD caregiving can be; prayer; seeking support from JF&CS Parkinson’s Family Support and other JF&CS programs; prayer; and learning from association with other PD clients at JF&CS not to stop when the light turns red.

Recently, we began to see Joe picking up a fork and feeding himself with dexterity. His bouts of agitation became purposeful leg movements: bending at the knee; lifting legs (over sides of bed and wheelchair); lifting knees in a marching rhythm; lifting his arms as if conducting the symphony while he listened to music. These signals told us that it was time to return to PD Dance.

Joe and PeggyHow could we not return? The bonus was Joe’s response to being “reintroduced” to Wednesday’s dance group. Usually reticent, he spoke loudly and clearly about how wonderful it was to be back, how much he appreciated the efforts of JF&CS to provide programs for people with PD, and shared that if there was anything he could do to aid in that goal, he would.

And the bonus bonus? He wanted to know when we were scheduled for the next dance session after our second visit. Returning to dance for Joe is giving him a sense of control over his situation. Thank you, JF&CS Parkinson’s Family Support!

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