"My Father, My Brother and Me"

That's the name of a documentary which aired on the U.S. program Frontline. It was made by a journalist named Dave Iverson who left his job at a public radio station and returned to his home town after he developed PD. Some of the science may be dated as it aired in 2009 but still well worth seeing. I watched it last night on my laptop. I don't know if it is accessible from the UK or not -- or how -- but I can find out. Here's the link: pbs.org/wgbh/frontline/film...

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  • It's a great documentary isn't it Beckey. Well worth watching. I found it in u tube.

    You might like these podcasts too which he co hosts.

    worldpdcoalition.org/?page=...

  • Thanks!

  • Thanks for sharing Beckey.

    I've posted your article at parkinsons.me/2016/01/10/my...

    Have a great day.

    Ewan

  • Yes saw that when we started this journey. Very good . Or not so whichever way u look at it

  • Hi Becky. This is a very interesting video. The story has changed a only a little since then.

    They (scientists) are working on stem cells derived from skin cells now, The skin cells are readily available and belong to the patient whom they are being developed for. In that way they overcome the problem of rejection.

    I was pleased to see that they showed monkeys doing walking and running and the positive affect it had on the damaged area of the brain. It is a pity they did not show the same affect on people, which has also been tested and proven.

    As they said in the video, while scientists are working on a medical solution to our problem we can get on with exercising and producing growth factors that either protect or repair the damaged brain cells.

    Because I have been doing fast walking for the past 23 years I have been producing the growth factor called GDNF in my brain and I not only have no need to take any Parkinson's medication since 2002, I now lead a normal life, at the age of 81.

    My Pd symptoms started in 1963, that is over 52 years ago and I am much, much better than I was in 1992, when I was diagnosed.

    I know that walking is not very popular amongst many people today, but if it helps us to get BETTER then isn't it worth a try?

    If you want to see more about what I do (free of charge) you can visit my website - reverseparkinsons.net. or write to me at johnpepper@telkomsa.net.

    I look forward to helping you.

    John

  • I gave this link in my reply to Beckie above John. It is from the World Parkinson Congress sponsored presentations and up to date. Number three is on exercise.

    worldpdcoalition.org/?page=...

  • Hi Hikoi. Thanks for this. I have been listening to the "Stopping Disease Progression: Growth Factors" presentation and have these questions, for which you may possibly have an answer:

    Why are scientists spending huge amounts of money to get GDNF and other growth factors into the brain when the brain produces its own GDNF etc? Is it only because they hope to make money out of a successful result?

    I know that encouraging patients to do energetic exercise does not generate much money, but it could lead to large numbers of patients getting better. Am I being dim-witted? Who is interested in helping patients to get better?

    Surely there must be some organisation that has the financial power to run a study to prove that fast walking produces something in the brain which reverses Pd, as it has with me?

    While I am still alive and kicking, why is nobody asking me to come and do some tests to see exactly what is going on in my brain that is reversing my symptoms and/or keeping them at bay?

    I can't live forever. Maybe they are all hoping that I will die as soon as possible and be rid of this nuisance?

    John

  • John

    If you watch news reports etc exercise for PD is forever in the news. Patients are encouraged to exercise.

    There is a lot of research on exercise in PD fast walking isn't unique and except for your claims john I haven't heard anyone say it is the best or only way. published papers? Alot has happened since the first WPC. The truth is they don't know what is the best way as discussed in the exercise webinar.

    The GDNF trials have happened because patients not pharma lobeyed for them. They have fought for a long long time to have the trials.

    As to researching you, I can't imagine how that could be done, impossible to do before and after testing and they can't look at your brain. If you seriously want them to study you have you donated your brain for research when you die? This is still the most useful way to help.

  • How does one go about that, do you know? I feel like I should carry some kind of a card with me like organ donors do but stating I want to leave my brain to PD researchers...

  • Beckey it will depend which country you live in.

    There are brain banks in some places (eg UK) and they will tell you the procedure. If you can't identify a brain bank then your national organisation/s should be able to give you the information.

    It would be interesting to hear what you find out.

  • Thanks. I'll let you know what I find out.

  • Hi Hikoi. In Dr Beth Fisher's report she showed that 'High Intensity' walking showed the best results. The scientists used DAT Scans to see the change in the brain cells of the patents taking part in her studies. I would assume that they could do the same with me, if they were doing tests on me and simultaneously with a person or persons with Pd, not doing the fast walking. I can be tested after not walking for 3 months, as I know my condition deteriorates in that time.

    Yes I donated my brain when I was diagnosed in 1992. What good it will do here in SA I don't know. I have the distinct feeling that the doctors here don't want me to have had Pd. So whether they could interfere with a study done on my brain I don't know. Sorry to sound so sceptical, but I have faced strong opposition from the neurologists here. Not all of them are fighting me but many of them are.

    It is a sad world we live in isn't it?

    John

  • How did you find the exercise podcast John?

    I haven't seen the Fisher research report you refer to but I do know that DAT scans were only approved for use in USA 2011

    For research of your experience your best bet may be to work with a supporter in the US ( gleeson? ) and approach physical therapy research institutions.

  • Hi Hikoi. It was very interesting. I noticed that father and son walked exactly the same as each other, including the left arm not swinging.

    I have been able to show people how to walk normally, which neither of them do in the video. In other words, they can walk with a normal stride and stand erect, if they were shown how.

    Who is Gleeson and how would I get hold of him/her?

    I am planning a 3-month trip to the UA and Canada from July to October. It would be interesting to meet up with people who are genuinely interested in helping people cope better with their Pd, and not just in it to make a buck.

    John

  • Hi John

    You are referring to the video where you watched father and son walking.

    The podcast is audio but not video. It is the third one here and is all on exercise.

    worldpdcoalition.org/?page=...

  • Hi Hikoi. I have spent the last hour listening to this excellent audio presentation and all I can say is "WOW!"

    Everything said in this is right on the button.

    I know that Rome was not built in a day and we are still at the beginning of finding exactly what exercise can do for Pd, and this sad fact was said by both professionals, "The medical profession is not trained to prescribe exercise". It has not been "Clinically Tested" and "There is no proof", but then specifically telling us of all the incredible benefits we obtain from doing exercise.

    I have first-hand knowledge of people whose UPDRS rating scores have continued to come down (Getting better) and that is all the proof we as Pd patients need, because that tells us we are getting better.

    Many thought-provoking facts come out of this presentation:

    1.Pd. is associated with Inflammation in the brain and exercise reduces that inflammation.

    2.Using the brain causes the brain to expand

    3. Exercise that uses the brain is better than exercise that does not. For instance, walking on a treadmill uses less brainpower than walking on an uneven surface and in a dynamic environment, like the streets.

    4. The UPDRS (Unified Parkinson's Disease Rating Scale) is all the proof we need that what we are doing either improves Parkinson's disease or it does not.

    I come to this HU website having changed from a seriously affected patient, unable to continue working and having a long list of symptoms, to someone who no longer has any obvious Pd symptoms and who is able to do what many healthy people of my age are unable to do.

    I can only tell others what has happened to me, and knowing that we are all different and have different likes and dislikes, I know that what I am suggesting that others must do will not work for everybody, I will continue to go on telling everybody, hoping that if only 30% of them can benefit from what I am telling them then I am doing 30% better than anybody else if 30% of the people can get better, as I have.

  • Hallelujah!

    I just listened to the World Parkinson Coalition podcast on exercise (thank you, Hikoi) with Drs. Helen Bronte-Stewart and Terry Ellis, and both these experts agree that the most effective kind of exercise is THE KIND YOU ENJOY THE MOST. One type might have shown the greatest efficacy in a given study, but the truth is, if you don't much care for it, you're unlikely to do it enough to gain the cognitive and quality-of-life benefit -- be it running, speed walking, crossfit training, weight lifting, yoga, spin, tai chi, boxing or dancing the tango.

    In the words of Godfather of Soul James Brown, "Excuse me while I do the boogaloo."

    One of Bronte-Stewart's patients, an 86-year-old yogi who practices actively, exhibits very few signs of the disease!

    Whatever the type, any regular exercise will decrease inflammation in the brain, she says, and spur the stem cells to become more prolific.

  • Common sense approach works for me! If you feel better doing something, than that's probably a sign that it's good for you.

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