How Our Journey Began

 In 1997 my husband was diagnosed with Parkinson’s. He was 38 years old.

While it was a shock, our lives didn’t  really change much until 2004 when the symptoms became difficult to manage. We were both working full-time: him managing the symptoms as best he could, me; helping dress, shave, shower and chauffeur him.

Eventually, in 2006, he underwent DBS (Deep Brain Stimulation) surgery. It was still a relatively new procedure at the time, but we felt confident this would prolong his ability to work longer, and perhaps even allow him to drive again. Surgery was successful in that it did permit him to stay in the workforce and drive a car about 3 years longer. The trade-off was it impaired his speech and compromised his gait; something we hadn’t had to deal with before.

Parkinson’s affects everyone differently. Symptoms can range from slight tremors to mild shakes to rigidity or freezing gait. My husband has very few tremors but his body is rigid at times, and he never knows when his motor skills will freeze up entirely. We aren't sure when he will be able to function or be completely incapacitated. As you can imagine, it’s difficult to plan even a short trip to the mall.

About 3 1/2 years after the DBS, he had to quit work and begin claiming disability. We never thought we would have to resort to that, but I’m certainly glad he had the foresight to add long-term disability to the withdrawals. Note to all; get Long-term Disability Insurance! You really never know when you'll be laid up! If we HAD gotten the insurance I would be able to hire help without it costing $25 to $30 per hour. (See the difference between Long Term Disability and Long Term Disability Insurance in post at upper right on home page).

Jamey is still able to engage in some of his hobbies, some of the time. It’s getting more difficult for him to create a video montage or animated film like he used to. But online computer games and Rotisserie Sports Leagues are very good therapy. So when he’s functioning, he does participate in what he can.

We don't know what tomorrow will bring, but we get through each day at a time. Thankfully, Christ guides our lives and helps comfort us in our frustrations. We continue to hope for a cure, but until then, we enjoy what we can, and keep a sense of humor about it all!

Update 2017:
We've had the disease for over 20 years now. The DBS treatment has peaked out and the Parkinson's is returning to its normal progression. Jamey is in a power chair almost full-time now and I am back to helping him with most everything. I had to quit my job in 2014 to stay home and assist him full-time. At night I get up with him when he needs to urinate as he can no longer hold the urinal himself. Unfortunately, he has the world's smallest bladder, too! LOL

In September, we took what will probably be our last vacation. With our two daughters and their husbands in tow, along with our 1 year old granddaughter, we took a trip to Disneyland to celebrate our 40th wedding anniversary (see A New Power Chair and a Vacay in Disneyland). It was a challenge, but well worth the work.

We manage quite nicely, albeit difficult at times. I had a stroke in 2012 which takes it's toll on my energy level and ability to help him, but we do what we can. We have hired someone to come in 3 days a week for 4 hours each morning and that has been great. It allows me to do some errand running and just take a break.

We continue to keep the sense of humor, and our faith in God's provision is strong. We don't know how people do it without that. We both hope this blog helps someone else with similar issues. Whatever we can pass on to someone else in a similar state, is a blessing for us!