Parkinson's disease: a personal experience
- Aust Prescr 2001;24:95
- 1 July 2001
- DOI: 10.18773/austprescr.2001.100
Kay Messiter is a 47-year-old single mother who has had Parkinson's disease for 13 years.
AP: When did you develop Parkinson's disease?
KM: It was around Christmas 1987 that I noticed a tremor in the top part of my right arm. There was nothing to see at that stage, but I could feel it when I did things like picking up the telephone. The tremor gradually increased.
The neurologists were uncertain of the diagnosis at that stage. There was nothing that could be done anyway because I was three months pregnant. I did not do anything until after my second child was born four years later
AP: How was the diagnosis made?
KM: I diagnosed myself. My general practitioner had mentioned Parkinson's disease as a possible cause of my tremor so I got some information from the Parkinson's Association. As soon as I read that information I knew I had Parkinson's disease.
AP: How did you react when you realised the diagnosis?
KM: I remember my flesh beginning to crawl when I read that Parkinson's disease was incurable, but it was a relief to know what I had. I decided I was not going to take tablets so I waited about two years before seeing a neurologist to confirm the diagnosis.
AP: What treatment were you given?
KM: I avoided treatment for a few years, but I was having problems with bumping into things, and everyday tasks like fastening buttons. My first treatment was selegiline. It had just come out and there was talk about it protecting the neurons, so I told my doctor I wanted to be on it.
AP: Did the treatment work?
KM: Selegiline held the tremor back enough for me not to need other treatment for about a year. I then started levodopa/carbidopa. I continued the selegiline, but eventually I had to stop it because of side effects. At times I could barely walk and had difficulty eating. These symptoms improved after I stopped selegiline, but it seemed to take months to get it out of my system. I also had to increase my dose of levodopa/carbidopa.
AP: What other treatments have you had?
KM: The dose of levodopa quickly increased to 950 mg a day. I was still having periods when I would have to stop what I was doing and lie down. I would have to take a rapid acting tablet levodopa/benserazide and wait for it to switch me on again.
As time progressed walking became a chore and it was difficult to get moving. If I had something important to do I would take amantadine and diazepam. They would keep me pretty normal; they were my `special occasion' drugs.
During 2000 things became more difficult. I had no energy and I was having to spend more time lying down despite having cabergoline added to my treatment. My nerves were on edge so I was also taking amitriptyline.
AP: When the medication became less effective what did you do?
KM: I decided to have surgery. If it worked I would get a number of better years, if it did not, I would just be in a nursing home a few years earlier than expected. It was an option I had to take.
AP: What was the surgery like?
KM: It did not worry me. My main concern was having to lie in the MRI scanner with a frame attached to my skull. My anxiety was relieved by the time I eventually had the scan because hospital delays made me wait all day in the ward with this frame stuck on my head.
The surgery was done with a local anaesthetic. Although the surgeon was prodding around in my brain, I did not feel anything. After what seemed like a couple of hours the surgeon was going to give up. As I had kept quiet about having surgery and had got somebody to look after my children, I did not want to have a second operation three months later. I asked the surgeon to have another go and luckily he found the spot.
AP: How has the pallidotomy helped you?
KM: So far I have had a good response. I can now go to a restaurant and eat with a knife and fork, walking is a joy and I look normal. I still get off-periods. They are not pleasant, but they are not as bad as they were. I now take entacapone and cabergoline, but I only need a smaller dose of levodopa/carbidopa.
AP: Do you have any suggestions for how doctors could better help people in your situation?
KM: Doctors need to listen more to their patients with Parkinson's disease, because we can find it difficult to express ourselves. While it is easy to focus on the physical problems, there is often an internal mental battle going on. I was prone to panic attacks, other people get depressed. Encouraging people to have a positive attitude is important. I am now working for Parkinson's New South Wales and can say to doctors that it will offer good support to people who want to talk about their experiences with other people who have Parkinson's disease.