How has Parkinson’s disease impacted your hobbies?

[Community Member]

I have two hobbies: designing and building furniture; and designing and building electronic circuits. Both are in jeopardy at the moment as shaky hands, poor eyesight paired with double vision, and short term memory issues make them nearly impossible. Nearly, but not totally. I can push through a project and complete it–it just takes much longer.

I have to let one of them go, and that is the electronic stuff, which is a shame because that was my first love; building things I could not afford to buy so I could use them to build more complex things I could not afford Eventually that became my profession. When I started building things for other people a lot of the fun was replaced with necessary but intrusive bureaucracy. That is when I discovered my third love (second being my companion)–building furniture. Over the years I got pretty good at it. I acquired tools and skills so when I retired I could “cheat” on my second love and build useful things again. Then I got a diagnosis–I knew what it was before I ever saw a doctor–that did nothing to soften the blow. I was 55. Now, 21 years later, I am finally realizing that I will soon not be able to do many things I take for granted now.

I deal with grief and pain by not acknowledging it until many years have passed. That is probably not the best approach, but it has carried me through some very difficult times. But this one, I won’t have any years to look back and tell myself, “Yes, that was a tough one, but I got through it.” This one is the end game.

Yikes, that was a real downer. There is a positive side–I have done better than just survive PD, I have found ways to thrive with it. Mostly, what I do is try to educate others about PD–what it really does to a body, a mind, relationships. So many people think it is just a tremor and it’s an old man’s disease. I have made presentations to politicians and played a tiny role in the effort to get the national plan to study PD approved in the Senate and House.

With some help from my wife and my sons, we built a teardrop trailer that has been all over the western states multiple times. I am still building cabinets. We are planning a kitchen remodel so it is ready for us to be in wheelchairs.

Msotly, I have lots to be thankful for: a supportive family; marvelously good health considering how long I have dealt with PD; sufficient retirement savings to last; Medicare and Social Security, neither of which may outlast the current administration; a compassionate partner; hope and faith for a better life to come.

May God bless you all.