Long Term Care Parkinson's

Centre of Excellence

I have been waiting for several weeks for my appointment at the UBC Parkinson’s clinic, a local Centre of Excellence and part of the Movement Disorders Department. Why nervous? It’s not that I was not familiar with the Clinic.

I was nervous exactly because I had visited them a few months before. I was not really impressed then by the clinic. We had arrived early as required for a first visit, only to be told that they were already running an hour behind schedule and maybe we should go for lunch in the meantime – not good if you depend on others for transportation.

After being interviewed by a resident who sat typing behind his computer screen for a long time. Then he dashed off to consult with the specialist. Then they came back together and said they think I was undermedicated – and basically doubled the amount of Levodopa that I had been taking. By that time I was physically shattered and just wanted out of there.

After a month on the new levodopa regime, unlike what I had hoped for (I guess I had hoped for at least some improvement), I was actually feeling much worse. Then started the saga of trying to get someone to help. I’ll spare you the details of the many, many phone calls I had to make. In my ignorance I thought that if a new patient reported having problems, the specialist would be eager, if not obligated, to see/speak to me. That turned out not to be the case. The specialist was not available, and there was no one standing in for her. Eventually I had to settle for seeing the nurse practitioner in person yesterday, and that took several weeks.

So my expectations were not very high. But I was nervous as now I knew that there were no other options for me, if this did not help…

It turned out that the she was very friendly. It basically came down to I had to decide what I thought would be good for me. This bothered me.

(A digression: It’s true that I have studied Parkinson’s in depth, has been my second home. But I have yet not found anybody from the medical community who has been willing to discuss Parkinson’s, the latest research, of the treatment options with me. After working years in a major teaching hospital in South Africa I know many doctors have a superiority complex, even though we sat in the same physiology and anatomy classes. I have a lot of respect for most of the doctors I worked with. What impressed me most is their ability to make a diagnosis by talking to the patient, often looking for subtle clues. I can describe the different motor pathways, how the motor cortex sends a movement request via the basal ganglia, how the neurotransmitters modulate the action potential moving down the axion, but I have no clinical experience!)

After discussing my symptoms, we settled on lowering the dose of levodopa (I had expressed concerns about the toxic effects of excess levodopa), but take it a bit more frequently. I am sort of happy with that. With my “years” of clinical experience as a movement disorder specialist … tongue in cheek … I thought it made some sense, and it was something to try.

I was right to be nervous, at least she was friendly. Like before, I was physically shattered and glad to eventually get home. Expecting a Parkinson’s patient to go through the physical ordeal of getting an appointment and not really getting the results one would expect from a centre of excellence, is not realistic. In the latest Parkinson’s Canada Roundtable Report it found that the shortage of movement disorder specialists (MDS) in BC was more acute than in other Provinces. There is currently 4 specialists in BC which amounts to 1 mds for every 1500 people with Parkinson’s. Considering the length of time it takes to train a movement disorder specialist, this situation is going to persist for many more years.

There has to be a better way!

One thing we have learned from the Covid pandemic is that it is possible to do teleconsultation using technology like Zoom and high speed Internet. It is not without it’s problems. I found that working with Zoom challenging – I am not as agile as I used to be thanks to Parkinson’s. I even get flustered when I can’t find my way around the Zoom screen which now on my phone screen looks different from my desktop screen.

A mds would ideally need to be able to touch a patient in order to a proper assessment. But there are no mds’ locally and must try and make the task for this very scarce resource – the lone mds typically hospital-based – as effective and easy as possible using several technologies. So I would need assistance with using the remote Parkinson’s assessment tools and cameras etc. that a movement disorder specialist would need. One should perhaps look into creating a “remote consultation technologist” position who would technology savy and can assist the mds and patient in setting up the system and doing the consultation.

I would foresee that the system would be smartphone driven, and linked to a mainframe database and employing AI. They already use smartphones in clinical trials to measure movement improvement scores and various clinical parameters. One should look at using these powerful devices and technologies to facilitate remote, and local consultations (if there is no mds available locally it is in essence the same). The system would also collect data on environmental factors.

Parkinson’s is the fastest growing neurodegenerative disease in the world. Industrial pollutants and pesticides is a major trigger for the disease. So the growth in Parkinson’s is greater in remote parts of the country due to past mining, forestry and agriculture activities. But thanks to the new remote AI Parkinson’s system, the person with Parkinson’s would be spared the arduous journey by skidoo on a frozen river to see an mds in the big city 1000 miles away.

If you are looking for a currently unemployed (unemployable?) biomedical engineer and have some research funding looking for a suitable project…