This is a worthwhile 28-minute podcast about Parkinson’s Plus conditions, including progressive supranuclear palsy (PSP), multiple system atrophy (MSA), vascular parkinsonism, corticobasal degeneration (CBD), and dementia with Lewy bodies (DLB).
soundcloud.com/world-parkinson-coalition/07-parkinsons-plus-conditions
Parkinson’s Plus Conditions
Podcast by World Parkinson Coalition
Speaker: Lawrence I. Golbe, MD, movement disorder specialist
Brain Support Network Treasurer Phil Myers listened to the podcast and reports: “This podcast was done a year ago in 2016 as preparation for the World Parkinson’s Congress in Portland. This is good coverage of all variations of Parkinson’s Plus. It compares each of them to Parkinson’s. It does talk about the lack of direct treatment but does discuss symptom treatments. And it talks about the difficulty of diagnosis.”
I’ve shared an outline of the podcast and a few notes below in case you want to forward to your disorder of interest.
Robin
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1:00 – Dr. Golbe begins a general overview of Parkinson’s Plus conditions
1:45 – PSP discussion begins
5:00 – terrific question and answer on why levodopa doesn’t work in PSP, MSA, etc.
6:00 – MSA discussion begins
8:00 – discussion of dementia in MSA
8:20 – is MSA a prion disease? He can’t comment on any one study in this format. He says many diseases are prion-like in that there is a toxic chain reaction. “Can’t catch MSA.” Key distinction is that in CJD, the key protein is prion. Prion protein can be transmitted more easily than other proteins.
11:00 – treatment of MSA symptoms
11:52 – discussion of vascular parkinsonism, which isn’t a neurodegenerative disease.
13:43 – CBD discussion begins. One-tenth as rare as PSP or MSA. Those conditions are one-twenthieth as prevalent as Parkinson’s. Life expectancy similar to PSP and MSA: between 5 and 10 years, typically between 7 and 8 years. Lots more tau in CBD than in PSP.
15:10 – MSA pathology
15:40 – DLB discussion begins. Spontaneous fluctuations that happen in DLB don’t happen in PD. Levodopa isn’t quite as effective in DLB than in PD. There’s is a problem that levodopa can cause hallucinations in DLB.
18:00 – general discussion. There is long-term hope via a double-pronged attack. First, stopping the protein aggregation or misfolding for a group of diseases. Second, focusing on each individual disease.
We are further along in PSP given the focus on Alzheimer’s – both are tauopathies.
CBD is more difficult to do research on — because it’s rare and because diagnostic accuracy is very poor (50%).
21:00 – general discussion. Neglected because they are rare, hard to diagnose, and no biomarkers. FDA can given these diseases the status of an “orphan disease.”
22:45 – general discussion about how to help these families. First, accurate diagnosis is important. Sometimes people are given fruitless tests on the way to a diagnosis. Second, symptoms can be treated. Palliative management of symptoms. Referrals can be made. Third, at academic centers, treatment trials or research projects are available. These can give patients the feeling of “fighting back” to help future generations.
25:00 – Dr. Golbe stops speaking. Podcast continues with comments from hosts Dave Iverson and Jon Palfreman.