Mitch and Diane
Mississippi Gulf Coast
The Beginning of Our PD Journey (May 2002)
Mitch, a healthy 60 year old, had just retired a few years earlier from a successful career as a federal agent and a thirty year military career, with one tour in Vietnam. He always took much pride in his work and his patriotism is still visible in everything he does. He had complained numerous times about dropping things and some strange sensations he was experiencing in his left hand. I really had not noticed any changes, but since he was a heart patient we saw his cardiologist immediately. He assured us that everything was fine but referred us to a neurologist to be sure. On July 6 my mother lost a four year battle with cancer (fourteen months later I also lost my father to cancer) and three days later in our follow-up visit with the neurologist, we heard the diagnosis…Parkinson’s disease. I do not recall either of us being too alarmed at the news as we really knew very little about it. Mitch seemed fine to me…a little shaky at times but nothing that we felt we could not handle. I could feel a slight tremor when he held my hand…but other than that everything was fine. To be on the safe side, Mitch wanted another opinion so we traveled to a neurologist in New Orleans, Louisiana, about 70 miles from our home. The diagnosis was confirmed there. We were told that Parkinson’s disease progressed slowly and that there were lots of medications to control the symptoms. Everything sounded like it would be just fine.
For the next two years, more symptoms began to surface and become more prominent. His left side was definitely being controlled by tremors, and he began to hold his hand very close to his left side. His speech continued to worsen. He developed Restless Leg Syndrome and some fatigue. This seemed to be controlled by medications for the most part. His gait and posture were noticeably changing. By this time we had found a neurologist at the University of Alabama at Birmingham (UAB), seven hours from our home. He was a specialist in the field and we traveled there twice a year. Mitch also participated in a study there on Parkinson’s Patients and Memory Loss. Mitch complained most about his speech, and this seemed to worsen as time passed. I found myself struggling to understand him as well.
In 2004, I chose to retire just short of a 30 year career at a local community college. I worked with college students with disabilities who faced many challenges in the academic setting. It was a rewarding career and difficult to leave. But, after losing Mom and Dad and feeling that Mitch needed me, I knew it was time to come home. We had a beautiful home on the water which we had remodeled as our ideal space…a perfect retirement setting. So, it was time for us to travel and enjoy our home together.
Our PD Journey Continues (2005)
We returned from our yearly trip to the Bahamas on New Year’s Eve. We made it a tradition to travel with two of our dearest friends during the holiday season. We continued to enjoy our home and adjust to our retirement life…together. Believe me, that was an adjustment! Mitch is a super intelligent guy, and he managed the finances. Although his typing was a little slower, he did a great job of keeping up with our household expenses. Good thing, too, because I admit that I am a very poor bookkeeper. He was also an avid coin collector and had quite a collection! Me? My two favorite past times are cooking and bird watching…I am fascinated with the wildlife on the bayou and spend a lot of time with all the creatures. I am sometimes referred by family members and friends as “Ms Doolittle." As you might guess, Mitch and I enjoyed our space here to the max!
The symptoms of Parkinson’s disease continued to worsen. We returned to Gulfport, Mississippi, from UAB at Birmingham, Alabama, for our yearly checkup in late August. A few medication adjustments were made, and we came home to the Mississippi Gulf Coast on that late Friday afternoon. Mitch was really getting frustrated as the medications just did not seem to be working effectively any more. On Sunday afternoon, we evacuated our home on the bayou due to the threat of an approaching hurricane. This was our third evacuation for the year, so we were not panicked. It was our norm. On that Monday, August 29th, 2005, our retirement home, our cherished space was a shell…all contents lost to Katrina forever. We would soon realize no storm could destroy our memories or our spirits.
Surviving the Storms: Life after Katrina and Life with PD (June 2006)
Nine months in a trailer and we finally moved into our home. One would think that the transition from trailer life would be simple. Not so. The recovery process was long and each step brought new challenges.
Weeks were consumed with unpacking the mostly flood-soaked belongings that we had deemed salvageable in August, but then found covered with dried mud and silt. At the time it seemed an endless task and sometimes our efforts seemed fruitless. The smell, the heat, and just the shock of the personal losses and devastation of our once beautiful neighborhood and community were overwhelming. 
As we unpacked each box, we reflected back on those early days after Hurricane Katrina. My cousin had arrived from Jackson in the days following the storm. She was a welcomed arrival as she brought much needed supplies that were unavailable here. The packing materials she collected on her trip to Gulfport, Mississippi, intended to serve a seemingly single purpose at the time, took on new meaning.
As Mitch and I began to unpack what she and I had packed just nine months earlier, the headlines on the old newspapers and the boxes marked “chicken filets, keep frozen” surfaced with new meaning. On that hot day, in the midst of Katrina recovery, a frozen chicken filet would have been a delightful meal. I had to laugh. I find it amusing that I never noticed until then what was written on the boxes. That must be a good thing since it was unlikely that anything cold much less frozen even existed at that time. And the newspapers we had used for packing, of course, were pre-Katrina. As I perused the old news written just days before the worst storm in history was about to strike our Gulf Coast, I found myself wishing I could go back, way back. I longed for the days with Mom and Dad whom I had recently lost to cancer, the days when Parkinson’s was unknown to us, the days when our retirement home was our dream come true, and the many personal things that were now gone forever. As I pondered those memories, the list grew longer of what I missed the most, what I loved the most, and what I wanted back. I felt warm tears fill my eyes and a sense of sadness consumed my soul. I was literally grieving once again. My chest actually swelled with pain. And as quickly as the sadness had come, it was gone. I felt a sense of joy and a true comfort of healing beyond what I could ever have imagined. I prayed that I could keep that feeling forever.
Summer 2007
Mitch and I were so proud to be back in our new rebuilt home. We had decided that “trailer life” was not our thing. We certainly never wanted to go “camping” again. Katrina had taken her toll on us, our lives, and our community. The stress that this natural disaster brought to us accelerated Mitch’s Parkinson’s disease. It would be years before we would realize the true devastation that this storm brought to our lives. Through storms come rainbows, and we learned the true meaning of love, care, and concern through friends around the country. Volunteers are still present in our community even today (2009) and we are forever grateful for their never-ending willingness to be on our Mississippi Gulf Coast to help us rebuild.
Mitch continued to have severe “freezing” episodes and balance problems. He had many falls, one resulting in a serious head injury. However, we were told all would be fine in time and that he would be ready to go for DBS (deep brain stimulation surgery) when that was approved.
Mitch was very anxious about having the DBS surgery which had been on the discussion table for quite some time. It appeared that the displacement of doctors due to the storm had delayed the DBS team’s availability at the hospital where we planned to go. Mitch’s condition was rapidly progressing and medications were becoming harder and harder to maintain with adequate results. His condition was very “not the norm" for PD patients. We were scheduled to go to the University of Miami for the surgery in August 2007. Needless to say, we were elated with this news and begin to prepare for this long awaited event.
January 2008
So began the next phase of our PD journey, a journey that was much faster moving and much more severe than for most Parkinson’s patients. We became very aware that Mitch's PD was atypical. He lost the use of his left hand, arm, leg and his speech was a different language…mostly only understood by me. Swallowing became a big issue as well. The PD was starting to progress to his right side. Other medical problems developed as the months passed. He had a pulmonary embolism and then two blocked arteries in his heart. Each of these issues had to be addressed. Needless to say, the hospital became our second home. In spite of it all, we kept going…we kept fighting…we maintained hope. The rough seas were here, but we were prepared, so we hoisted our sails and kept sailing into the winds. As someone once shared with us…do not wait for the storm to pass, learn to dance in the rain. And that we did.
Mitch was finally approved for the DBS surgery on April 1, 2008, which would now be performed in New Orleans, LA, with our original neurologist. We had great faith in this doctor’s skills and knowledge, so we were happy to be back there and close to family and friends. The day of surgery began uneventful and filled with excitement, but bad weather delayed arrival of some equipment so Mitch’s surgery did not begin until the early evening. As you can imagine it was a long day. Mitch remained in good spirits throughout it all. I was not surprised as he was certainly a trouper and always gave his best.
Mitch did very well in surgery and the medical team was encouraged that we would see some positive results. Communication was difficult for Mitch and that was an important factor in the lead placement in DBS surgery. So, once again, it was a “wait and see” situation. We had great hope for great results. For a short while, we did see some remarkable changes. The stimulator was turned on May 16th. But shortly thereafter, Mitch developed pneumonia. Complications continued, but we kept fighting. On September 27th, 2008, Mitch went to be with our heavenly Father. I spent the last few nights holding him in my arms, talking to him about the wonderful life we shared, and also about the wonderful friends we had made because of PD. I kissed his last breath. That was God’s gift to me.
July 2009 What about Me?
The adjustment has not been easy. I am blessed with a wonderful church family, an incredible circle of friends, a forest full of trees, three wonderful brothers and their families, Mitch’s precious family, and wonderful memories of my life with Mitch. I will keep going and am learning to look ahead to a new life. I have no idea what that may be without Mitch, but I trust that I will fulfill my life here on earth and find happiness in whatever is ahead. Funny, just when I thought I had it all planned, life changed. Mitch and I had a great life…we wanted more but I will treasure what God gave us. It was beautiful. I am forever grateful.
Please remember as you read our story, Mitch’s Parkinson’s Disease was very “out of the norm”. Let our story be an inspiration to you, and smile when you think of him. He is fighting for each of you. I will always support a cure.
