Is everyone aware that only when 70% of our glial cells, and possibly 80%, have been destroyed, can we be diagnosed with Pd?

Surely there is some way of knowing that we have Pd, before 70% of our glial cells are damaged? I have read recently that signs of misfolded alpha-synuclein can be found in our skin cells. Then surely, taking dead skin cells and examining them for misfolded alpha-synuclein can be an easy and cheap way of regularly testing people for Pd?

John

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  • JohnPepper

    "Salivary gland biopsy appears to be a diagnostic test for Parkinson's disease, a new study suggests.

    A biopsy of the submandibular gland that shows the presence of the abnormal protein alpha-synuclein is highly indicative of Parkinson's, as distinct from other neurodegenerative disorders that can mimic the disease, said lead study author, Charles Adler, MD, PhD, from the Mayo Clinic Arizona, Scottsdale, Arizona."

    Full Article: medscape.com/viewarticle/77...

    I would appreciate a reference to the skin cell research.

    fwes

  • Hi Fwes. I got this information via The Northwest Parkinson's Foundation Weekly News Update. It is not very recent. I cannot print the full story here but the reference is: McDermid, E. (14 Nov. 2013). medwireNews. Parkinson's Biomarker Could Be Only Skin Deep. medwirenews.com.

    This is good news because it will njot involve any surgery. How long this will take to become reality is anyone's guess.

    John

  • Hi Fwes. We should not need to have to go and have a biopsy, in order to establish that we have misfolded alpha-synuclein in our body cells. In my mind, I feel sure that we don't only need to have the misfolded protein, we also need to have certain genes, which make us vulnerable to getting Pd. I don't know what it costs to have a gene test or what it costs to have a skin cell test for Pd, but I bet it would cost a hell of a lot less than what it costs us for medication and doctor's fees, after we are diagnosed.

    John

  • Um..did you say costs less than medication? Think about the likelihood of getting that research through the funding gauntlet. On the other hand, maybe thinking positively, and loudly, is best.

  • genetic and positive findings in Alzheimer patients had a fairly low relationship to symptoms so the presence of these cells doesn't help diagnosing the disease because some people can have dramatic manifestations of the cells and be perfectly fine. Our doctors treat symptoms only not futures or possibilities.

  • Hi fwes. I tried to download the info on Salivary gland biopsy, but could not get into the site without registerring. I heard about this from NWPF and think that I put it onto my website some time back. I cannot find it at present. It seems easier than getting it from dead skin cells, of which we have plenty.

    John

  • Considering the amount of time between onset of symptoms and diagnosis for most of us, this does not surprise me. My symptoms had started about 10 years before diagnosis, I now know this is not unusual.

  • Considering that something is killing cells, that (say) that 60% are dead at the first symptom, that a typical PD patient lives10-20 years after diagnosis (time for the other 40% to die) we do the math:

    10 years for 40% 20 years for 40%

    15 years for 60% 30 years or 60%

    assuming a consistent linear cell mortality rate

    providing an affectation period from

    25 yrs to 50 years.

    PD maybe initiating in children!

  • Hi Fwes. Some people I have spoken to swear that they have had symptoms since they were children. The point is, Would there be any benefit in us knowing that we have Pd, long before we get to the stage of 70% + damage? I feel that if those people had changed their lifestyle to increase exercising and avoiding harmful stress, would they have been able to avoid having to take medication, with the attendant side effects?

    John

  • You are talking about biomarkers John.

    Biomarkers are used for early diagnosis and for tracking disease progression so very important but to date we have no validated, inexpensive markers for PD. MJFox foundation is funding alot of work in this area. Your example is one possibility.

  • Thanks Hikoi. Yes! I know the name but I try to keep this discussion to the level where everynone can understand what is happening. I don't want people to switch off when they start reading something they don't understand!

    John

  • Thanks Hikoi. I get very excited when I read about new biomarkers being studied. The problem seems to be that we hear about these things and then we hear no more about them. Do they stop researching, as a result of some business transaction, or are they loath to publish their progress?

    John

  • Guess it could depend on where and how you get your information, what scientific sites you subscribe to. MJ Fox has a site dedicated to updates on Progression Markers research.

  • Hi Hikoi. Could you please let me know what that site is?

    Many thanks

    John

  • My understanding of Glial Cells is different.....was not aware that they were associated with PD? My understanding is that both dopamine biosynthesis and presence of Lewy Body cell inclusions is associated with the Neurons (Nerve Cells) themselves, not Glial cells? My understanding is that Lewy Bodys contain the Alpha Synucleon Proteins?

  • The point of this question is to establish exactly which cells are affected by the misfolded alpha-synuclein and whether these cells are killed off. And if they are killed off, why aren't they removed by the normal process of apoptosis?

    John

  • was not aware that alpha synucleon bundles are associated with Glial cells. Nor that apoptosis is an issue....PD does not involve uncontrolled cell growth or tumor formation. My understanding is that it involves massive duplication of the bundles. (perhaps analogous to virus replication?)

  • Thanks for this discussion. I'm 54 diagnosed officially 2 years ago, Had first tremor at age 22. I'm not sure I would have wanted to know this at she 23. I have four young adult kids ages 25-20. My 24 year old said she would not want to know. But three if my four children have mitochondrial muscular dystrophy that is no where in the family either

  • Is MMD along the spectrum of mitochondrial disease that results in more than just muscle but all over disabling body symptoms such as physical changes and possible mental delay? If so, geneticists have found in mitochondrial disease 3 gene variations affecting mitochondrial energy production (negatively) in fibromyalgia as well, and one of these genes in PK. Those of us w fibromyalgia can attest to fatigue, unusually tight muscles and stiffness, (I should start a class for fibro-ballet-dancers for laughs), sleep problems, intermittent shakiness, and being considered clumsy - dropping things, walking into door jams and coffee tables (the same ones year after year), and stumbling and falling more than one should.

    Bless you for being 'blessed 4431'. Incidentally, both my sisters have fibromyalgia and other autoimmune diseases. Our parents were totally bewildered.

  • You're right about all over soil depletion - especially on the sand bar where I live - I try to buy organic in the hopes something may be there but it's big business now too.. I have heard of these products you mentioned but did not know colloidal silver had an effect like repairing DNA. That's important in ageing bodies like mine. Chlorella seems good in general. I didn't know protein w enzymes existed. My body likes protein drinks. Guess I'll take a second look. Thanks much

  • Hi Pennworthy, thanx for the info If I understand correctly, we should take Colloidal Silver and Clorella. Is Instant Protein available under this name?

  • Hi blesses4431. My point is that if we knew that we had Pd, long before it gets to the stage of being 70% damaged then we would be able to make changes to our lifestyle that would possibly prevent the symptoms from getting any worse. That would mean that we would not lose our quality of life and be possibly a lot healthier than would otherwise have been the case.

    John

  • I agree John

  • Hi JohnPepper, if I think back to my childhood, I was always off balance, not good at any ball games. Maybe that was already signs of PD. The first time I went to a Dr with a light tremor on my left side, I asked him if it could not be the onset of PD. He asked me to walk down the passage, and said no, definitely not!!! Then in May 2009 I woke up with tremmors and was only formally diagnosed in Aug 2010. All the neurologist let me do is smell some cards, let me walk and bluntly said I have PD. I had to call 3 times before I could get a prescription - Luckily I found another neurologist who cares.

  • Hi Anid. As you possibly already know, I am not a doctor or any other form of medical person. What I say here is garnered from my experience as a Pd patient. In defense of neurologists, it is very difficult to diagnose any movement disorder with certainty. As far as the prescription is concerned, I would say a move to a more caring doctor would not be a bad idea. I would suggest to you that read up as much as you can on Pd and learn what each symptom is all about. My web page - reverseparkinsons.net - has a lot of info on symptoms and treatments. Give it a try.

    Kind regards

    John

  • Hi Jim. Have you only had one person reacting favorably to the protein? If so, would it not be possible to find others and do a test on them. I know what it is like being the only person to actually get better, but I am unable to persuade very many people to do energetic walking, and change their lifestyle. It also took me ten years before the recovery had got to the stage where I was able to stop taking Pd meds. I am still waiting for others to join me in this list of people who have recovered.

    John

  • Penworthy,

    The information many of us have been waiting, with bated breath, for you to clarify concerns your phrase "Instant Protein w/ enzymes." I've never heard of "Instant" Protein. Is this some sort of a commercial brand name product?.Is it manufactured by Nabisco or General Mills or some other well-known company. If it is not, and we can''t go to the store and buy a box of it, then where do we go? What proteins included in the mix? And what enzymes are you referring to? Are they encompassed in with the proteins. Please be a more expansive in your description of this product . You and JohnPepper are using powerful terms of hope: RECOVERY. REMISSION. Events that my neurologist tells me will simply never happen. "Parkinson's is a life sentence," he tells me. "No known cure and nothing on the horizon," he affirmatively states. Nonetheless, I bought John Pepper's book and was spurred on to vigorously exercise. And I do. I believe I may be slowing the progression but not reversing the disease. But I will push on, hoping against hope. Please tell me where I can acquire this protein and enzyme elixir. I yearn to become normal again.

  • Hi,

    I’d like to update my report that coconut oil (CO) has changed my life and dramatically minimized the effects of PD symptoms on my daily life. Diagnosed with PD in 2001, I had reached a point where severe fatigue ruled my life. The fatigue sapped the energy needed to project my voice, stand up straight, or do anything at normal speed. I had to take at least one nap every day.

    Everything changed on the very first day in November 2013 that I added 2 tablespoons of CO to my breakfast smoothie. I have not taken a single nap since that day. Simple tasks like brushing my teeth, buttoning my pants, dressing myself, bathing, cooking and walking are all dramatically easier for me to accomplish. My family and friends all believe there has been a dramatic improvement that is undeniable. I have heard many comments that my voice is louder, that I’m standing straighter, (not straight – yet…) that I’m walking faster, that my speech is more “animated,” that I look “healthier,” that I look 20 years younger, and many more.

    I have caught myself standing on one leg to put on my pants! Can you imagine such a thing? Not to mention putting on jackets and sweaters without help. I feel many symptoms are reversing themselves.

    I was so astounded at my own reaction to CO, I wanted my sister, who has Alzheimer’s to try it but she couldn’t afford it. I sent her daughter the money to get started, and she called on day four to exclaim that her previously withdrawn mother was now coming out of her room to interact with family members. She also said her mother had even gone to a restaurant and a movie with them, and on the day she called me, her mother was not only cleaning her own room but rearranging the furniture! She promised me she would make certain her mother got CO everyday. I’m now talking to my sister regularly basis by phone. (Something that was previously very difficult due to her incoherent rambling) She sounds like a different person. My other two sisters are taking it now as well. Both report increased energy, and one of them has substantially reduced her insulin dosage. Her personal log shows lower blood sugar counts on the days she consumed CO. In fact, she had to be careful of low blood sugar incidents on those days. Now, she just takes CO every day.

    I am on a mission to encourage people to try coconut oil. If it worked for me, maybe it will work for you. Good luck!

    CocoKay

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