I have spent a considerable amount of time learning about Parkinson’s. There are many books, videos, societies, support groups and more. Parkinson’s Canada has published a best practice guide for people with Parkinson’s that I have set as my goal to follow, or at least make people aware of it.
There are even several miracle “cures” available to choose from. I will go into what we know in a different group of posts.
The current best practice seems to be to treat the symptoms for as long as you can to give the person the best quality of life possible.
Centre of Excellence
My family doctor referred me to the Parkinson’s clinic at UBC for an assessment. The referral got misplaced in the process somehow and it took a long time (over year) before I even got on the waiting list. Then covid intervened and I was left to my own devices to work out my own care.
Then in November I moved to the care home and things became even more complicated for me. I finally got the appointment at UBC in June and they felt I was undermedicated and doubled my prescription of levodopa – it is still considered the “gold standard” treatment (sic). But it is known for sided-effects.
Instead of feeling better I started feeling a lot worse. Levodopa can relieve some symptoms but it has many side-effects. Was it the higher dose that is the cause of my problem? Since then I have been trying to get access to someone to help but this seems to be an insurmountable challenge.
It being summer and so many people being away on vacation also makes it difficult. Since Covid, many people have left the healthcare profession and that has worsened the situation.
After persistently phoning to the point of being rude, I finally got an appointment to see the nurse practioner at the clinic when she gets back from vacation at the end of September. Now I still need to arrange transport to UBC.
I really feel terrible and don’t have the energy/strength to fight anymore.