Sep 15, 2015|
Jon Palfreman discusses his book "Brain Storms: The Race to Unlock the Mysteries of Parkinson's Disease"
Transcript - Not for consumer use. Robot overlords only. Will not be accurate.
The news you need to live from the boston.com newsroom it's the boston.com morning show on the voice of Boston WRK. If I 36 welcome back every line there's a book out on the market. That he's. Fascinating and many calling it a must read this book is called bringing storms that raced to unlock the mysteries of Parkinson's disease. The book is poignant on in that it tells the stories of many patients who have Parkinson's disease is highlight this disease in highlights those who were researching. In an effort to to find a cure. But I think what makes it even more fascinating is that its author actually has been diagnosed with parkinson's. So can speak from first person jump jump government. Is joining us this morning the author of brain storms that raced unlock the mysteries of Parkinson's disease. And John were you diagnosed prior to writing this book that wasn't clear to me or were you diagnosed after he started. You know prior to reading that spoke I mean be it the irony is that. I worked from parkinson's the Genesis early in my career and I don't always know that talk about the disease and I've met many of the nearest scientists until I until. I never thought that it of the old city as I can get it would be parkinson's. But in 2011. I was diagnosed with Parkinson's disease and after going into our sort of like this stages of grief and denying it and getting angry and trying to keep it secret for awhile. I can't find any process the information and I realized that I had a opportunity and it's a destiny almost there. The use my skills as and says that the science journalist remains participation. To actually explore all. This new prayed that it before me and that's what led to this book. When you say that seven million people worldwide suffer from parkinson's. But walk us through rue. If you will from diagnosis. To may be full blown parkinson's what what are we talking about time wise. And what are some of the symptoms I know many people have referred to it is shaky palsy that maybe walk us through a few well. Well practically it's being seen as a movement disorder and then. Very often the first thing in my case it was just a tremor in one of Miami and then there's my left hand. It's not only to Travis sometimes it's it's stiffness and rigidity. Everybody starts to move more slowly you refinement to skills start to pack comp and not being very good. You might have trouble right into this and that type of contract he might start writing an intense mortar and small risk or micro Graf you know. Sometimes the facial expression gets that. And things just progress. And and so basically. I am at the tradition and you know the traditional picture isn't as somebody who stops and looks shaky in frail. And I think has so far from bad. Indy and the early days before and try accordingly Paducah. And patients used to die within six to seven years and and then that after Oprah Oprah. You know patients living 20/20 five that he is doing very well and if you if you use our very print your exercise and you do everything right. You you can have a good long I think. Then you know you lose bits to view it's like that this is so much like it's and teach stealing their propensity who is cute that you go along which you can find back. And one of the things I've. I'm inspiring in writing this book is is connecting with parkinson's patients who who found ways to sort of I can't control of their party BankAmerica bounces or. All most celebrities who who who wouldn't who started foundations and it's their very inspiring stories. And I think parkinson's Timothy Mohammed Ali. Then he Aziz senators are right John devoted to parkinson's research and helping people with the disease. Yes Mohammed Ali is one person is gonna foundation Michael J. Fox is sort of foundation. It's an English that radical Palmer basics to. Who walked around the coastline of Great Britain a distance of 4500 miles to raise money to form a foundation which he now runs. Little kinds of people that I think Leo concept governor Quinn who teaches parkinson's patients how to trick the body to move properly. The people who do don's. There's people who do all kinds of exercise people who run marathons. We even have one of the conference I went to there was even an astronaut to develop parkinson's he's seen as somebody's been optimistic since the space so it's. A pretty impressive group of people and that's one of the things which I recommend. We knew people who being diagnosed do history is to reach out. If tendency is to withdrawal by its sister wrong tendencies should reach out and connect with people who can help you get it right. Well John we've seen evidence he knew you stated just moments ago that he used to be if you were diagnosed at your life span was quite short and now it's been extended dramatically but there is no cure. This is a brain disease and looking into the brain is a very very complex issue. That's correct there's no cure all but it is BA junior science and what we think now is that the course of parkinson's is. Approaching corner opposite new team which goes group did miss Folsom forms sticky clumps. And these crimes jumped from Euro to Euro and telling them and they wait. And so we we should note that this damage is going on maybe ten or fifteen years before you get a diagnosis and continues to the end of your life. And so now everybody's looking for agents which can go in and can dissolve these clumps of outsourcing nutrient and the first of those. Products our parent drink clinical trials in the next hero to so. There there is a possibility I mean if this were Q could you could stop parkinson's before it actually appeared. In somebody who hadn't guarded and and somebody like me you are that you could stop it getting any worse and so that would be. Pretty obvious solution effect effect could happen. Is there any constant characteristic. In those who are diagnosed. No it's in practice of its coming. We wish Captain America and problems from the movement disorders but there's an enormous range of severity with him parkinson's some people have. A fairly mild course which they can live very well some people progressed more rapidly. And it'd be told to do with the underlying pathology going on and in the brain and body. Amid some people some people really go downhill very quickly but other others it's a very amazing you can see is they're still operating 25 is an agent. And what about those. In other characteristics pop prior to being diagnosed though it does it seem. There aren't that bank on the approach drivel signs and so designs that that seem to come out of the epidemiology is. Sleep disorders you know typical ram behavioral sleep disorder where you packed argued dreams. I'm constipation. You know the the lack of bowel movements that also senses smell. Those three things. Predictive of maybe developing bad and now they're gonna. Slam dunk it doesn't mean it happened you're gonna get parkinson's but that predictive of getting parkinson's. Until everybody's looking for bio markers that things which can indicate. The toxins into the coming down the road because those those candidates would be perfect for the new the new drugs which would break up now the thing you've been. Well the book is called brain storms that raced to unlock the mysteries of Parkinson's disease. I hope figure well John and we're so glad that you could come and enlighten us on a disease that. We hope you know those trials gets started very soon in and around the results are fantastic. Well and I'm I'm holding steady set thank you very much for your concern and I appreciate the chance to talk to. Thank you sir John pal for men and again the rain storms. The rich to unlock the mysteries of Parkinson's disease and I 44 here on WR camp.