Parkinson's Disease: A Success Story

Story of Inspiration

This is a story of inspiration and hope, and it displays how the outcomes can change for the better when you have experienced professionals on your care team.  As a registered nurse, healthcare consultant and advocate, I believe that it’s important to share stories of success to achieve better patient outcomes.  This is a true story about a client diagnosed with Parkinson’s Disease (PD) who I am privileged to work with and his success.  To maintain confidentiality, some of the names in this story will be altered.

Beth contacted me to inquire about advocacy services for her brother, Tim.  Tim was in a long-term care facility following a hospitalization and it was clear that he would not be able to return to his own home where he previously lived alone.  Tim has Parkinson’s Disease and his condition declined during his illness.  Beth lived in another part of the country, and she was concerned that Tim may not be receiving the best care at the large facility, so she asked me to assess the situation.

When I visited Tim at the facility; my first impression of his situation broke my heart.  Tim was sitting in a transport chair – a wheelchair used during transport to and from places, not to be used on an ongoing basis – with his head awkwardly resting on his legs.  He was wearing a helmet because the team at the facility felt he was a falls risk.  He was sitting alone, next to the nursing station, without the company or interaction of any other residents or staff.  His clothes appeared dirty; wearing sweatpants and a sweatshirt that were too large.

I introduced myself to Tim and we found a private place to review his medical history.  For this story, it’s important to know that along with Parkinson’s Disease Tim was diagnosed with moderate dementia and hearing loss.  Tim and I had a wonderful first meeting, although I didn’t see him smile.  I continued to visit him weekly; working with the director of nursing and director of physical therapy (PT) to find ways to improve the care, and his mobility (the facility would not allow him to walk except when in PT two times per week).  We also wanted to make sure he was able to attend the activities he was interested in.

After speaking with Beth and Tim, we knew that this facility was not the best permanent solution for Tim.  Beth enlisted the help of a professional who specializes in helping people find appropriate living options.  While the search for a new home for Tim continued, I was visiting Tim and advocating for him, and it became evident that the diagnosis of moderate dementia was not accurate.  Tim shared stories from his past, what he ate for breakfast the same day, and he always knew what day it was.

The fact that Tim was wearing a helmet at all times, except when asleep, and that he had difficulty hearing made me wonder if that diagnosis was made by someone who hadn’t taken the time to make sure that Tim could hear the questions accurately during their evaluation.  Or maybe, Tim was sad and withdrawn, and wasn’t interested in actively participating during the evaluation.  While a cognitive impairment is likely with the progression of Parkinson’s Disease, a comprehensive screening should be performed.  It also continued to bother me that Tim was in a large facility that was supposed to improve his mobility, yet they didn’t have the staff to help him walk.

The placement professional had found a facility that Beth, Tim and I agreed would be a better fit for Tim.  This was a smaller assisted living facility with only 8 residents.  I spoke with the owner of the facility and expressed my concerns about Tim wearing the helmet and not walking.  Of course, we always need to keep safety in mind – an unsteady gait accompanies Parkinson’s Disease- but I felt it was important to explore physical therapy in Tim’s new home and determine if he can walk safely.  I also shared my belief that the moderate dementia diagnosis was not valid.

I let Tim settle into his new home and I visited two weeks after his move.  The change in Tim was astonishing – I get happy tears replaying that visit in my mind.  Tim was walking with a walker and without a helmet!  He walked a great distance throughout the facility, and he was speedy.  He was smiling and dressed in a nice polo shirt and khakis; clothes that actually fit.  Tim was shaved and had a haircut – which is just the way he prefers.  I almost didn’t recognize him.

Tim and I continue to visit with one another on a regular basis.  He even has his own cell phone now and calls me if he is running low on supplies.  Our time together is full of smiles, discussions about art, music and his travels.  Tim attends church in the community and enjoys local restaurants.  He is very intelligent, with a kind heart and a love for many things.  He has made amazing progress since moving.  

In my professional opinion, Tim certainly does not have symptoms of moderate dementia.  He wasn’t in the right place, and he wasn’t receiving the right care.  Now Tim is in the right place, and he is receiving excellent care.  Having the right professionals on the care team and being in an environment that supports and allows one to thrive is exactly what is needed to achieve optimal success – but most importantly, it achieves happiness!