Parkinson's list of current (in development) therapies

[Farooqji]

This is a comprehensive list of current trials and therapies which are being tested

drive.google.com/file/d/1Ne...

[Delhitinkerer]

Thank you!

[Astra7]

thanks. Very helpful.

[crewmanwhite]

Interesting that there is not one study or trial listed pertaining to lifestyle or dietary modification, nor any considering recovery protocols.

But then, these are not patentable are they?

I know this is a utopian dream, but when will some philanthropic organisation support and coordinate a comprehensive suite of studies looking at what we already know to be causes of PD and proven strategies that can stop and reverse the illness process?

I am almost 80 (2 weeks) and been in this field for 60 years, a practitioner specialising in PD for 25 years. Yet I have been refused funding and ridiculed while there is $billions spent on profitable research.

Yes, some of these trials may lead to medicines that may help some people to modify some symptoms for some time, but we need research into recovery strategies.

We know recovery is possible - I have recovered and know others have - so let's study us and what we did to get well again.

Let's spend money where it is meaningful instead of profitable!

Okay, end of rant. Sorry.

[Hidden in reply to crewmanwhite]

Rant away, it's good to rant! The medical profession seems odd in that it doesn't consider all possibilities. I fixed computer systems in my career (regrettably!) and complex issues were brainstormed with nothing left off the table. It worked, we reached 100% availability! It seems fixing machines that serves customers worldwide was way more important than fixing human beings. The cost of downtime more urgent! That's my rant out of the way for the day.

[Bianhua in reply to Hidden]

Wise reflection! Thank you

[crewmanwhite in reply to Hidden]

I totally agree.

[Bianhua in reply to crewmanwhite]

I completely agree. So many folks finding their own way, often spending what they don't have, so that they manage their day to day in a more human manner. And it could all be so much diferente!

[crewmanwhite in reply to Bianhua]

Well said.

[rleedc in reply to crewmanwhite]

Interesting post. What do you think are some of the most effective ways of recovering? I too am a practitioner but do not specialize in PD

[crewmanwhite in reply to rleedc]

Many people on many forums have asked what I did to recover from stage 4 Parkinson’s disease (PD) and early stage Multi System Atrophy (MSA).

The detailed story is told in “Shaky Past”, available as an eBook on Amazon for about $3.

The complete details of therapies and activities are in “Rethinking Parkinson’s Disease”, available from several sites online and in many libraries.

However, here are the basics. As an aside, even though I support the sensible use of low-dose levodopa drugs, I chose not to in my own journey.

CAUSES

• Trauma/Stress -I discovered that my descent into illness began at conception with a very stressed mother, abuse during childhood and very high stress in work and family.

• Ongoing stresses included a career in middle management, very ill child, my son’s death, being forced out of a charity I had helped create, loss of career, permanent night shift for three years.

• Toxic load – malnutrition as a baby, very poor-quality food in childhood and learned bad food habits (lots of animal milk and cheese, refined grains, sugar, over-cooked fats, coffee, tea, etc), garden sprays, leaded paints (Dad was a builder/handyman), work in a copper mine, work in a film processing factory, work in a hospital, heavy smoker for 43 years, binge drinker for 10 years.

• Infection – there was no indication that stealth infections were part of my aetiology, even though about 30% of those diagnosed with PD test positive for one or more infections.

STRATEGIES

• Saw psychologists, counsellors and dream therapists to deal with old trauma;

• Changed my relationships with family and others around me;

• Learned to love myself as a priority;

• Completely changed my food habits – eliminated animal dairy, grains, sugar and focused on lean meat/chicken, oily fish, eggs, vegetables, fruit, nuts, seeds, legumes.

• Meditated 2-3 times every day and joined a meditation group;

• Exercised in some way every day;

• Sang and “danced” (moved to music) every day;

• Took Aqua Hydration Formulas to help repair the HPA axis;

• Supplemented with C, magnesium, B complex daily, sometimes D3, zinc and E.

• Saw Craniosacral and/or Bowen therapists regularly;

• Kept a journal of symptoms and events around me that may have affected my wellbeing;

• Continued to work, study and be involved.

My journey was hesitant and uncertain (I had no precedents to study) but my journal showed me that I was slowly making progress.

Three years later I was free from symptoms and remain so unless I am foolish by working too hard (I am now 80 and still work full time), eat stupid food, inadvertently make contact with neurotoxins that may temporarily overwhelm my wellness (but I can detox) or allow myself to become stressed about matters that are not a priority (e.g politics, social nonsense). In these times, I develop a mild head or hand tremor that dissipates swiftly as soon as I get back on track.

This is not a restrictive life at all. I live well, eat lots of tasty food, have treats and am active in my work and community. But I live within the limits of my wellness and eschew most of the western habits of destructive foods and toxic lifestyle.

I hope this story is helpful.

[rleedc in reply to crewmanwhite]

thank you and I appreciate your input

[crewmanwhite in reply to rleedc]

You are most welcome

[Bianhua in reply to crewmanwhite]

Thank you fo sharing really inspiring and valuable information. I shall share it. I support a dear friend (and ex-hubby with a diagnosis). I also support folk with a parkinson's diagnosis through mindfulness and lifestyles approaches. So I truly appreciate you gifting your experience to others.

[Trig27 in reply to crewmanwhite]

How did you recover?

[crewmanwhite in reply to Trig27]

Many people on many forums have asked what I did to recover from stage 4 Parkinson’s disease (PD) and early stage Multi System Atrophy (MSA).

The detailed story is told in “Shaky Past”, available as an eBook on Amazon for about $3.

The complete details of therapies and activities are in “Rethinking Parkinson’s Disease”, available from several sites online and in many libraries.

However, here are the basics. As an aside, even though I support the sensible use of low-dose levodopa drugs, I chose not to in my own journey.

CAUSES

• Trauma/Stress -I discovered that my descent into illness began at conception with a very stressed mother, abuse during childhood and very high stress in work and family.

• Ongoing stresses included a career in middle management, very ill child, my son’s death, being forced out of a charity I had helped create, loss of career, permanent night shift for three years.

• Toxic load – malnutrition as a baby, very poor-quality food in childhood and learned bad food habits (lots of animal milk and cheese, refined grains, sugar, over-cooked fats, coffee, tea, etc), garden sprays, leaded paints (Dad was a builder/handyman), work in a copper mine, work in a film processing factory, work in a hospital, heavy smoker for 43 years, binge drinker for 10 years.

• Infection – there was no indication that stealth infections were part of my aetiology, even though about 30% of those diagnosed with PD test positive for one or more infections.

STRATEGIES

• Saw psychologists, counsellors and dream therapists to deal with old trauma;

• Changed my relationships with family and others around me;

• Learned to love myself as a priority;

• Completely changed my food habits – eliminated animal dairy, grains, sugar and focused on lean meat/chicken, oily fish, eggs, vegetables, fruit, nuts, seeds, legumes.

• Meditated 2-3 times every day and joined a meditation group;

• Exercised in some way every day;

• Sang and “danced” (moved to music) every day;

• Took Aqua Hydration Formulas to help repair the HPA axis;

• Supplemented with C, magnesium, B complex daily, sometimes D3, zinc and E.

• Saw Craniosacral and/or Bowen therapists regularly;

• Kept a journal of symptoms and events around me that may have affected my wellbeing;

• Continued to work, study and be involved.

My journey was hesitant and uncertain (I had no precedents to study) but my journal showed me that I was slowly making progress.

Three years later I was free from symptoms and remain so unless I am foolish by working too hard (I am now 80 and still work full time), eat stupid food, inadvertently make contact with neurotoxins that may temporarily overwhelm my wellness (but I can detox) or allow myself to become stressed about matters that are not a priority (e.g politics, social nonsense). In these times, I develop a mild head or hand tremor that dissipates swiftly as soon as I get back on track.

This is not a restrictive life at all. I live well, eat lots of tasty food, have treats and am active in my work and community. But I live within the limits of my wellness and eschew most of the western habits of destructive foods and toxic lifestyle.

I hope this story is helpful.

[Trig27 in reply to crewmanwhite]

TY

[gaga1958]

There is only a preamble, it stops after Kevin McFarthing's email address.

What did i do incorrectly?

[Boscoejean in reply to gaga1958]

same here

[Farooqji in reply to Boscoejean]

Excel sheet tabs have the details

[Boscoejean in reply to Farooqji]

okay so this stuff is over my head but somehow I stumbled on the page where it lists all the research