September 26, 2004 the day my late wife (Toni) was diagnosed at the age of 46. I never missed a neurology appointment after that. We began our journey immediately with research. What can we expect? What is the best route? What can we do to fight this. We signed up for clinical research studies. She started specific exercise’s 6 to 7 days a week. Home modifications started to make doors open easier and continued for the next 18 years!

We became involved with the local support group and MPF. We both continued to work full time. I picked up more responsibilities around the house. Eventually Toni had to sell her business as PD progressed. DBS came into the picture and her life improved but not enough to return to work. I retired in 2014 to become a full -time caregiver. We traveled all over the country for many years. I became the PD Support Group Facilitator in 2016.

PD started to take Toni’s voice which was devastating as her career was built around public speaking. We eventually found the Speak Out Program and she regained her voice and we become advocates for the Parkinson Voice Project. Which led us to be able to share our journey to many Speech, PT and Medical students in the Midwest.

When traveling anywhere I made sure we had extra medicine, proper papers. Thank you, cell phones! Then while traveling Toni’s journey ended unexpectedly on Feb 5, 2025. As a primary caregiver what happens when its over in a second. I was blessed that we had some of those hard talks between ourselves then our children.

I’ll gladly share my experience on any of this.

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