My life as a degenerate

Aug 16

Whilst on another visit to Australia, I saw my neurologist again. He was happy with my progress and we continued with the Sifrol ER at the 2.25mg dosage, which he had put me on in March and which I had resisted up until the beginning of August.

In the seven months since diagnosis, I have run into people who have had a terrible time with their own diagnosis. What is the difference, I have wondered, between my case and theirs?

Pros

• Firstly, I found lots of info about Parkinson's on the internet, and could research it till the wee hours, summer heat and fatigue willing, both before and after my diagnosis.


• I had connected with a support group almost immediately, and had received a variety of handouts from the state Parkinson's organization.


• Another thought is that I am already over the hill - I am 56, my children are grown up and have their own lives.


• I am not the major breadwinner in my family, and I do not at present have a job.


• I was in Australia where, even without a Medicare card, there is "affordable health care."


• I was not misdiagnosed earlier.


• There was no one in my family with Parkinson's, so I didn't witness the distressing symptoms that come in the advanced stages.


• My version of Parkinson's has so far been typical and easily treatable.

Cons

• Neither my doctor nor my neurologist gave me any brochures or handouts. Because I didn't ask for any or because they didn't have them to give out ?!


• I am not in a position to deal with the cost of doctor and specialist visits, and the cost and availability of medication. This stops me from being able to look into the future or make longer term plans.


• I did see people with the disease in my mother's nursing home. Symptoms such as extreme dyskinesia are not pleasant to watch when one is just starting out on the PD journey.