Preparing for Life as a Real Old Person with Parkinson's (ROPWP)

PD is progressive, and it keeps on marching with us through life to the end. That is certain. PD has been my companion for 40 years now (harking back to those early symptoms). And 16 years since diagnosis. And with no remission, it just keeps on pushing you along.

Knowing I might need nursing care one day (in the distant future), my husband and I decided to move near family and renovate a new (to us) house with my future health status in mind. Neither of us want to go to a care facility. Our goal is to be at home as long as possible. My husband and I talked about what things we could do now, that would help us stay in our home. Regardless of your circumstances, I hope you will get some ideas to help you.

The move across country put us nearer to family. We bought a home and renovated it to be wheelchair friendly. We replaced carpeting with tile.

We renovated the master bath to allow wheelchairs in and about, and in the shower, we added a bidet to the toilet seat. OK, I can hear you thinking ewwwwww! What the heck?! But trust me, for hygiene, and especially for the people who may have the job of bathing you, a bidet is wonderful thing.

We added pocket doors to give easier access. We have a slight ramp to the front door. Every bathroom has handicap bars in the showers and WC area.

We have plans to transform a bedroom with a private bath into a temporary living area for any in-home-health-providers (IHHP). We will provide bed, tv, internet, small fridge—similar to a hotel room. This will give family and IHHP privacy when needed. And it will be more comfortable for the IHHP to have a designated place to go when not on duty.

Compile a list of any surgeries or major health conditions you have had. When dealing with my mother in hospital (stroke and Alzheimers), I learned to carry with me her Health POA and health end of life requests, plus a list of surgeries. It didn’t matter that hospital “Admitting” had scanned in that info, I still had to give the documents to physical therapy, and the nurses at the floor where her room was. I started carrying all of this info in the car’s glove compartment because I seemed to always need it.

Following is a list of things to think about.

• Remove carpeting and replace with tile—this should help reduce falls

• Remove throw rugs

• Position furniture with extra space between pieces

• Add ramps to the front entry and other entries

• Move the bedroom to the ground floor

• Add handicap rails in the bathrooms

• Have health care permissions legally set up and on hand

• Make a list of your surgeries and health problems

• Get a “bidet” that replaces of your toilet seat (trust me)

• Visit a lawyer and set up the paperwork so family members will clearly know your what your wishes are.

Jean Burns was a presenter and committee member at the 4th World Parkinson Congress in Portland, and she presented at 5th World Parkinson Congress in Kyoto. Jean helped launch the WPC Video Competition and WPC Blogger Partners. She has participated in over 25 clinical trials and is an active Parkinson’s advocate.

Ideas and opinions expressed in this post reflect that of the authors solely. They do not reflect the opinions or positions of the World Parkinson Coalition®