I wrote the following text message in reply yesterday when asked how I was doing? I repeat it as is as it reflects how I was thinking when struggling with insomnia and neuropathy.
No news is good news I guess. I had a text from Gerda this afternoon. She basically asked the same thing. She suggested I speak to Joanne Davies at UBC clinic.
I explained that she was taking mat leave. The nurses said that if she had arranged a follow up call she would certainly call me then, as she was good with following up.
The situation is basically as follows. The prescription she wrote is not working out. That means a new one will have to be worked out. I have been trying my best, by reading my new treatment book (my manual), to figure out what we should do now.
He has a whole section on what to do when the medication no longer seems to work. His experience is that Parkinson’s progresses slowly. So when meds stop working suddenly, there is something else wrong. He suggests these to be common causes:
1 Another illness probably a UTI or Flu/Covid or diabetes.
2 The meds are not absorbed properly because of constipation,
or I am taking the meds too close to meals – he stresses 1 hour before and 2 hours after.
The solution recommended: a) Get your physician to check you over for other illnesses. b) resolve constipation problems, c) recommit to not eat close to meal times.
If that fails, start over with the medication and find the optimum dose of Levadopa and then decrease the interval progressively until you get the most consistent response – then look at other medications to use to augment the levodopa.
So that in a nutshell is where I am at. If the inflexibility of the system made my life hell before with a simple new prescription from the UBC clinic then you can imagine what this proposal is going to give rise to.
I have tried to phone Cory Toth to find out if he in interested to work with me by verifying my symptoms, and writing a prescription as requested. I also want to talk to him about my early diagnoses, what was his reasoning. And what he thought of my new treatment book’s protocol.
I have been struggling a lot with the neuropathy pain in my feet, and I am concerned I might loose them. I have done a lot more research and the best advice is do massages, foot exercises, ice, and walking, It appears that vicks helps a little but biofreeze works faster, lasts longer and does not irritate your eyes. I wanted to know what Toth thought of this as he is a neuropathy expert.
I contacted his office and asked him to call me or give me a time when I can call him. The receptionist insisted that I would have to do a phone consultation, which as I don’t have a referral will come out of my pocket.
I was also thinking of collaborating with him on my idea of developing a Parkinson’s support system, in the hope that he would be more keen to help if there was some incentive for him.
I have to figure out what to do next?