My PD Story

It began over 20 years ago with a slightly quivering little finger that we didn't worry much about. It grew over several years into an all-out disaster with tremors shaking Andy's head, arms, hands and one leg. Medication didn't help his shaking, so he bravely endured living that way. Unable to feed himself, get up and down from a chair, roll over in bed or walk without help. He never gave up the idea that something would come along and help him. He was right. 

DBS (deep brain stimulation) surgery came along and he qualified as a candidate. The surgery stopped his shaking 100%. He could drive again, cook, eat, work out at a gym — Andy got his life back! But DBS did take away his voice causing speech and swallowing issues. The same stimulation that stopped his shaking also suppressed his voice. He whispers softly now — and has for 11 years. But he no longer shakes. It's always something. 

I've been his caregiver through it all. At one point, another caregiver and mentor told me her husband had lived with Parkinson's for 20 years and was doing well. 20 years! 

Now, it's been over 20 years for us. Parkinson's never stops and Andy lives with his whisper voice, aspiration of food and liquid and very recently, Parkinson's dementia. It's always something. 

What scared me about my friend's words about her husband's Parkinson's lasting for 20 years was that I couldn't imagine our lives being happy living with this disease, for that long. I was wrong. The disease always changes and there have been many times when we have been able to fulfill a lifetime of adventure and joy over these last 20 years. 

We traveled to India many times and Andy was able to design and oversee a 160-foot suspension bridge being built at the orphanage where we volunteered time after time. For five years we camped and rowed at Catalina Island, CA. We took a two-week trip to Scotland and drove through the Highlands with two of our kids. 

During COVID lockdowns we traveled to London, England for six weeks to meet our new son-in-law. We continue to make welded bronze jewelry together (our full-time business before Parkinson's) and exhibit each Christmastime at a juried art show in Austin, TX. 

We're here for veterans.

Together with the U.S. Department of Veterans Affairs we have developed key information and resources for veterans navigating Parkinson's.

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I learned about the Parkinson's Foundation by looking for resources online, and often enjoy perusing Parkinson.org. We have been living with Parkinson's for more than 20 years and most of our resources over that time came through the VA (the U.S. Department of Veterans Affairs). A woman named Virginia at the Los Angeles VA directed us to the Parkinson's Foundation and other organizations that support people living well with Parkinson's.  

I have become an author and wrote a book, Your Wildest Dreams: A Parkinson's Love Story, that is available online. I write a weekly blog and newsletter in support of Parkinson's caregivers. 

Andy's life is slower and harder than we think it would have been without Parkinson's and yes, Parkinson's changed our lives dramatically, but it has not ended our joy or adventures. 

Our advice is to keep on living your dreams and goals. Our experience has not been a downward decline but one of ups and downs, just like all life.  

We’re here for caregivers! Explore our Top 10 Essential Caregiver Resources.