My Experience with Parkinson’s Disease
I lost my mom to Parkinson’s Disease when she was 50 years old. Now, if any of you know anything about Parkinson’s Disease, you probably know it’s normally not diagnosed until someone is in their 60’s. My mom was diagnosed with it when she was 41.
The average age at which it is diagnosed is 60. However, about 10%-20% of those diagnosed with Parkinson’s disease are under age 50, and about half of those are diagnosed before age 40. When the diagnosis is made early, it is referred to as “young-onset” Parkinson’s disease.
I was in high school when she was diagnosed, and didn’t really think too much of it, honestly. She still pretty much seemed the same, except she shook sometimes. From everything I read or heard, Parkinson’s is a degenerative disease, meaning it would take years, even decades, to progress to a level where she couldn’t function properly without assistance. I read information like this, which for my mom, was the farthest thing from the truth:
“However, there is good news for people with young-onset Parkinson’s disease. Young-onset Parkinson’s disease is different from older onset Parkinson’s disease. In general, younger people have a smoother, longer-term course of the illness. While this may, in part, be a reflection that the younger people have fewer other health problems than older people with the disease; the rate of progression is still significantly slower. Associated problems, such as memory loss, confusion, and balance difficulties, are also less frequent in young people with the disease.”
Oh how much I wish that were true for my mom.
Growing up, my mom was one of my best friends. She was a younger mom, and always was involved in what we were doing. She liked to decorate trees at Christmas and throw fun birthday parties. She had short, blonde hair that was always permed curly. She liked to smile real big at babies in grocery stores and they would just beam right back and laugh with her. She cooked a mean Thanksgiving dinner, with all the fixin’s. She had a slow, southern drawl- a remnant from her growing up in Savannah, GA. She always toted me and my friends around in her gold Volvo station wagon. When we would pull in the garage, she’s sing silly songs like “home again, home again, jiggity jig, home again, home again, with a fat pig!” And while we were at stoplights, she would sing “...red light, red light, what do you say, I say stop and stop right away!…”
When I went to college, she was acting a little different. Her personality changed pretty quickly. Research now points to her odd new behaviors as being side effects of her Parkinson’s medication. She split with my dad and ran back to Georgia (we had been in Kentucky for years by then). I didn’t talk to her much around then, but whenever I did, I would notice her voice had changed and I knew she wasn’t making it in very much to the clothing store she worked at. Something was amiss, but as a college student, I didn’t pay much attention.
She got more physical symptoms within the next few years, when I was a junior and senior in college. She ended up moving back to Savannah to live with her mom, and then her sister. She wasn’t able to work because she was rigid all the time, and was falling a lot. She ended up seeing a specialist at the Medical College of Georgia and they decided she needed to have deep brain stimulation (DBS) treatment. She had surgery where they implant electrodes in her brain and then install the “controls” on her chest so she can control the stimulation. The premise is to stimulate the areas of the brain that aren’t acting right so the patient can have relief of symptoms and be on less medication.
Also from (guess where!) WebMD:
With deep brain stimulation, the vast majority of people (over 70%) experience a significant improvement of all their symptoms related to Parkinson’s disease. Most people are able to significantly reduce their medications.
Dang. They were wrong about that too. At least in my mom’s odd case. She, again, was in the minority.
My mom had zero improvement. By the time she was 46 she was in a nursing home. No 46 year old should ever have to be in a nursing home. She was having occupational therapy so she could try to remain walking, but she was already using a wheelchair by now. Her problem wasn’t shaking (as often seen with Parkinson’s patients like Michael J. Fox), but it was rigidity. Her muscles would just “freeze” and she couldn’t control her body.
On the phone (I was still in Kentucky, she was still in Georgia), her speech was slurred. I couldn’t understand her much at all. I asked her over and over to repeat herself, and often would laugh nervously or just stop asking her to repeat herself and act like I understood what she was saying.
One day, I got a call from her nursing home. They told me my uncle, who had signed her into the facility, wasn’t paying her bills. She had Medicaid, and the alimony from my dad was supposed to go straight to the nursing home as her only income. Instead, the uncle was pocketing it. I had to quickly find a facility back in Lexington to house her, and then my sister and I drove down to get her.
She was 47 and in a wheelchair, almost completely unable to move. We had to change her Depends. Shower her. Lift her into bed. Figure out how to get her in and out of the car. Pretend like we could understand the words she was saying.
I put her in the only nursing home that I could find in town that had Medicaid spots available. It was awful. The smells. The noises of upset patients and disgruntled nurses. The older patients she couldn’t relate to. And my once vibrant, bubbly mom, laying there immobile, day in and day out. They quickly stopped occupational therapy on her. Guess she was too fargone to get help from it anymore. Her eyesight was going. She drooled all the time. She never wanted to eat anything but sweets. She wanted her “things”- possessions left back in GA that she could never use again (and I couldn’t recover from the thieving uncle). Her denial and delusion that she could live in an apartment and just get a helper to come over once a day. The bed sores.
Things were like this for about two years. She was in and out of the hospital with different infections. When you have Parkinson’s Disease, it doesn’t kill you. The sedentary lifestyle, however, led to frequent urinary tract infections that would get pretty bad. My now husband, finace then, went with me on the weekends to visit with her. It was so difficult. I hated being there, and I hated myself for hating it. I couldn’t talk to her. I talked AT her. Told her every mundane detail of my boring life (back at grad school now). One Sunday, she was pretty unresponsive- as bad as I had seen her. I asked the ambivalent nurses if she was okay. Not much response or urgency from them either. Later that night, I got a call that she was going to the hospital.
I arrived at the hospital around 10pm. The nurses there were appalled at her condition- bed sores, dirty, etc. I felt like a failure of a daughter. I could only give her a Medicaid-covered bed and had no idea how to handle being an advocate for her.
She had a UTI again, and was admitted. This time was worse than the others. She was in a regular room for the first day, and then they transferred her to ICU the first night. She was in septic shock. I was in the middle of a stressful MBA program, and it was 3 days before my birthday. My friends brought me food while I waited in the ICU waiting room. The nurse called to my sister and I and told us we could sleep in the room with her that night. It would be her last.
We watched her take her last breath. We watched the life leave her. At age 50, and 2 days before my 26th birthday, she was gone.
I invite everyone who knows someone affected with Parkinson’s Disease to donate to find a cure.
Update: 2.17.11 – I am completing my first half marathon on April 3, the 4th anniversary of my mom’s death. In her honor, I’m raising $2,500 to donate to the UK Kentucky Neuroscience Institute that will go towards Parkinson’s Disease research. I’m hoping that this will be the first of annual donations, and that it will allow me to help others in a way that I felt I couldn’t help my mom. You can donate here.