PD School 2020 – Update

This will be a short blog post regarding the PD School being conducted by Dr Laurie Mischley which I wrote about in the last post. A few days ago I received the following message from Dr Mischely:

Hi Tom,
Yours was one of many requests I’ve received the past few days to make class #1 free. 
Done. It is now free.  
Thanks for helping spread the word!  
If you have or have not watched the first class, you now have an opportunity to not only watch it but forward that class to family members, friends, care givers and any other person you think could benefit from a good discussion about what it means to be diagnosed with PD. 
As I mentioned in the last post, this lesson should be offered to all newly diagnosed Parkinson’s patients- it answers so many of the questions we have at that point but didn’t know enough to ask during that first meeting with the neurologist.  The two links below take you to the overview lesson (was already free) and the orientation lesson which is now free.
I have completed lesson two “Dopamine Repletion” and lesson three “How Do We Know What We Know”.  Both were excellent and I highly recommend them both.  Here are a few of the highlights:
Lesson two – Dopamine Repletion – is an excellent overview on the drugs available, along with when is the best time to take them and avoid the protein from meals blocking the transfer of dopamine to the brain.
She utilizes the results of the ongoing CAM Study and other published research to support taking your levadopa/carbidopa with water  mixed with vitamin C to provide additional stomach acid to speed up the breakdown of the pills.
In addition, she discusses the use of  Fish Oil and Citicoline (both supplements) to reduce dyskinesia by improving the uptake of dopamine so you can reduce your overall dose.
At the end there is a brief discussion of Mucuna, a plant form of levadopa followed  by a ‘guest lecturer’ who discusses the pluses and minuses of using Mucuna.
Lesson three – How Do We Know What We Know – discusses PD research from all directions.  She was worried this would be the lesson no one watched,  but it is another must see as she tackles traditional research, the placebo effect and more.  Rather than try to recapitulate it all here I am going to just pull a few points from her summary at the end of the lesson:
-Physicians, patients, and researchers all describe/ define PD differently.
-Everyone says they want medicines that slow PD progression, but they don’t have a scale to measure progression.
-By time a patient is diagnosed, ability to significantly impact course may be compromised.
-We don’t know who is going to get PD (screening tests), we don’t know who is at greatest risk of progression, we don’t have a tool to measure progression, and we can’t agree on a definition.
-A shocking amount of researcher time goes to keeping one’s job. If you’re not bringing in grant money, you don’t get paid, so instead of just doing science, we spend our time courting the system. Novel ideas and  innovation must swim against a significant current. Everyone wants so
As she wrapped up this lesson, she said she favors a ‘friendly competition’ among PD practitioners.  If she is doing something right, doesn’t your neurologist need to know and if they are doing something right, she wants to know that too. 
Sounds like a good idea to me.
“It does not matter how slowly you go as long as you do not stop.” – Confucius

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