Volunteering for Research Gave Us Quality of Life
Diagnosed at 36
I was diagnosed years ago with young onset Parkinson's disease, my husband Bruce and I and our three children (Kate was 14, Eddie was 11, and Carissa was 4) had no idea what the future held for us. I was sure of one thing. I did not want my family to walk on eggshells around me. My son caught on quick when I told my kids that I had PD. I said I was still going to be their Mom I just might be a little slower, his reply was good “I might actually win in a race against you now,”as he smiled up at me though his glasses. That is my boy.
I had once thrived on multi-tasking, the bigger the challenge the better. That was no longer the case with PD. Two years after my diagnosis I had to give up my career as bank manager. I soon began having less "on" times. My mornings were a race between my medication and foot dystonia - the meds rarely won. Bruce had changed jobs, and he took a cut in pay. I could no longer be alone at night. It was very tight financially but we were getting by, then I fell in the Medicare donut whole and we had to choose medication or mortgage. We chose the medication then filed for bankruptcy. My doctor had tried changing medications to ease my mornings, but I could not tolerate the change.
The "on/off" fluctuations began to increase. We moved closer to Bruce’s job, he came on lunch to see that I was okay. I had a few instances where I had driven the car and had to wait until my next dose of meds kicked in to come back. I sat for two hours one day. I fell asleep at the wheel once but woke up just in time. It was time to stop driving.
Within the last two years, my "off" times became less predictable. One morning I walked Carissa the bus stop. There had been a crime spree going on, and I did not want anything to happen to her. As the bus drove up, I could feel the meds were wearing off. Carissa got on the bus, I quickly turned to go back, took a few steps, and that was it. I was frozen, unable to move. I sat on the bridge, felt in my pockets. No meds, no phone. So there I sat on the bridge, fifty yards from my home. The first thing that came to mind was Laurel & Hardy, "Well here is another nice mess I have gotten myself into." I was so mad at myself. My Doctor had warned me not leave the house without my meds or a phone, but did I listen? I prayed God would help me. It was not more than two minutes. A man walked up to me and said, "I work in the building across the street. Are you okay? I have seen you walk you daughter to the bus in the past but never just sit on the bridge?" I told him what had happened, and he took me home. Thank God for the kindness of strangers.
At times, I would become so dyskinetic I felt like Jim Carey in the movie The Mask, “Somebody stop me”! By the summer 2009, I was only having a few good hours a day. That’s when we decided it was time to move back home. Our family and friends were willing to help. I was fighting with everything I had to keep going.
I thought back to when I was first diagnosed. So much has changed in over nine years. My daughter Kate had chosen a career in health care. She takes care of the mentally and physically disabled, and she has given me my first grandchild. Eddie, who I was afraid would never move off the couch with his video games, has grown into a responsible young man; he just graduated with a bachelor’s degree in computer information technology. Carissa, my baby, has become a beautiful person - inside and out - and an excellent cook. My husband and I have grown closer because of my PD. Every time he would pick me up, not just physically but mentally, I could see deep inside how I was breaking his heart. There was nothing he could do but watch me slowly fade away. It was time to find a way to be back among the living.
I found all the information I had stuffed in that drawer. It was a 12-week double blind drug study on the efficacy and tolerability of Levodopa/Carbidopa intestinal gel. The gel is pumped into the small intestine from a j-tube that is surgically placed sending a very small dose of medication every minute for 16 hours a day. What this does is level out the highs and lows. Once I completed the 12-week study I was invited to do a 12-month study with the real Carbidopa/ levodopa gel. After that was completed, I could stay on the drug until it got the approval of the FDA. The cost to me would be nothing. My medication and surgery to place the j-tube would be free! To me that sounded like the best option.
During the 12-week double blind study, an abundance of record keeping is done. I was certain the gel was the placebo, but I was not turning back now. Time for the 12-month study. It was September, back in the hospital again. This time, once I was receiving the gel I would stop the other medications. I started my day early so at 4:30 am the nurses came in with the cartridge. I connected it to me. After maybe five minutes. I looked at the nurse. I said “no way,” I can already start to feel the effects - the rigidity was easing, my breathing was becoming easier. The nurses left and said they would be back in 30 minutes. After 20 minutes, I was on my feet in almost a run to the nurses’ station. I had a grin on my face. I could feel my arms were swinging when I walked. I said in a clear voice “Look at me, I am walking. I can’t believe it." The nurses were amazed at the transformation.
I ended up staying in the hospital 10 days total. I had a chance to get my strength back. The only Parkinson's medication I am on now is the gel and two Amantadine a day. At night, I do take four mgs of a dopamine agonist to get me through the night. As I walked out of the hospital that day I thought about what a very long time it had been since I felt so free. I could take a deep breath, I was standing straight. I walked with both arms swinging all the way to the car on my own. I feel like I have turned back time. I am no longer on the roller coaster ride of on/off fluctuations. I have left the house to go for a walk at 7:00 am. I have gone to the movies at night. My granddaughter has not asked me, in six months “Nana, why are you sick?’ Instead, we made snowmen for the first time together this winter. I am driving again. Carissa came to me with a big grin a few weeks ago; I cautiously said,”What’s up?” She said, “Next year I can get my permit, now you can teach me instead of Dad." I said, “Let us see when the time comes.” I often catch my husband watching me with a grin on his face. When I asked him, “What are you smiling at?” His response was “I just like watching you.”
The carbidopa/levodopa intestinal gel is not a cure. However, it has improved my entire family’s quality of life. For that, I am thankful.