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.

Being prepared for the future

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 wants to go to a care facility. My husband and I t =alked about things we could do now that would help keep us in our home. Regardless of your circumstances, I hope you will find some ideas to help you.

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

Renovation plans

We renovated the master bath to allow a wheelchair in and about and in the new drive in shower. In addition, we added a toilet seat. OK, I can hear you thinking eewwwww! What the heck? But trust me, for hygiene, and especially to aid anyone who may have the job of bathing you in the future, a bidet is a wonderful thing.

We have plans to transform a bedroom with private bath into a temporary living area for any in-home health providers (IHHP). We will provide bed, tv, wifi, small fridge–similar to a hotel room, as a result, it will provide privacy to the family and to the IHHP when needed. Above all, it will be more comfortable for the IHHP to have a private space where s/he can go when not on duty.

Compile a list of any surgeries or major health conditions you have had. When dealing with my mother (stroke and Alzheimers, I learned to carry with me her Health POA, and any required {POAs giving me power to handle her affairs, including end of life requests, and a list of her surgeries. Whenever I met someone from a different department, they invariably asked for those same documents. Upon asking why this was so, no one at the hospital could explain.

Specific recommendations

Following is a list I recommend you think about:

  • Remove carpeting and replace with, wood, laminate, tile etc.
  • Remove throw rugs
  • Position furniture with extra space between pieces
  • Add ramps where necessary
  • Move the bedroom to the main floor
  • Have health care choices and permissions legally on hand
  • Compile a list of your surgeries and major health problems
  • Get a “bidet” toilet seat to replace the original one (trust me)
  • Visit a lawyer and set up your legal health documents, so family members will clearly know your wishes, and you may act on their behalf
advanced Parkinson’s