Jeannie’s PD journey

“Happiness resides not in possessions, and not in gold, happiness dwells in the soul.”

So wrote the philosopher Democritus who was born in 460 BCE (although some claim his year of birth was 490 BCE). He acquired fame with his knowledge of the natural phenomena that existed in those times and history writes that he preferred a contemplative life to an active life, spending much of his life in solitude. The fact that he lived to beyond 100 suggests his philosophy didn’t do him any harm.

OK! Before I continue, please let me state, as before, that I write to you purely as Jean’s husband. I have no medical skills or knowledge at all and if you are at all affected by any of the following make an appointment to see your own doctor!

The crux of this post is Jean’s relationship with a naturopathic doctor at a practice in Seattle. The practice is Seattle Integrative Medicine (SIM) and a number of the doctors at SIM specialise in patients with PD. That’s how Jean was connected with Dr. Laurie Mischley. (Dr. M)

When one goes to the web page for Dr. M one reads:

Clinical Specialties – Parkinson’s Disease (PD)/Parkinsonism

Dr M conducted tests including testing her ear wax*, extensive blood analysis and an analysis of a sample of Jean’s hair.

* Dr. M has a dog that can reliably smell the presence of PD in human ear wax!

The favourite drug for those with PD is Levadopa.  Within 48 hours of Jean taking Levadopa she had a serious allergic response to that drug.

Back to Dr. M’s tests. All three tests were non-indicative of PD. A while later, in a subsequent telephone conversation, Dr. M wondered if Jean really did have PD. She recommended a referral to the Oregon Health and Science University (OHSU) in Portland. Specifically to their Department of Neurology and to Dr. John Nutt. His background may be viewed here.  From which one notes:

John Nutt, M.D.

Co-founder and Director Emeritus of the OHSU Parkinson Center and Movement Disorders Program

Professor of NeurologySchool of Medicine
Expertise

Neurology

Special focus on
Parkinson’s and Movement Disorders

Jean’s appointment was at 08:30 on Tuesday, 9th July. In terms of the timeline of all of us, Jean was diagnosed as suspected of having PD in December, 2015.

Dr. Nutt saw us promptly at 8:30 and immediately revealed a listening, caring attitude. He also quietly admitted that he had been a doctor specialising in neurology and movement disorders for 39 years! There was no question in my mind that we had landed in front of the ideal physician under these circumstances.

Over the next hour, Dr. Nutt examined Jean in a great number of ways. From her stretching her arms out, Dr. Nutt examining Jean’s arm joints, watching Jean walk along the corridor outside his examining room, and much more.

Eventually he paused and looked us both in the eyes. He then spoke quietly: “Jean is displaying a number of classic symptoms of Parkinson’s disease. I have no doubt that Jean does have the disease.”

Of course it wasn’t long before I mentioned Laurie Mischley’s opinion that Jean might not have PD. But Dr. Nutt was very clear with his reply. Namely that PD cannot be determined from hair and blood tests alone and that the potential sufferer must be examined physically.

Dr. Nutt asked me if I had noticed that when Jean held her arms straight out in front of her at shoulder height the tremors in her right hand ceased yet when she was relaxed with her hands in her lap the tremor in her right hand was very noticeable? I had not spotted that.

“Paul, that is a classic Parkinson’s characteristic.”

Dr. Nutt went on to say that watching Jean walk gave him another indicator of PD. Because although Jean walks well she doesn’t swing her arms. Classic PD!

Without doubt, Dr. Nutt’s impression was Idiopathic Parkinson’s disease.

But Dr. Nutt also said that Jean was doing incredibly well taking into account that she would have been suffering from the disease for at least 4 to 5 years and that her commitment to lots of exercise including her RockSteady class, that he was aware of, and her vegetarian diet was critically valuable.

It was now time to turn to medication for Jean. Dr. Nutt said that of all the drugs Levadopa was the ideal to combat the loss of dopamine in the brain. He was puzzled as to why Jean had had such a strong allergic reaction to the drug. He wondered if it was a reaction to the Carbidopa that in the USA was so often a component of the Levadopa medication. If so, that could be worked around. Dr. Nutt even mused that he had known of a patient who was allergic to the yellow dye that is sometimes in that medication.

His medication plan for Jean was for her to start on a 1/2 tablet of carbidopa-levadopa 25-100 mg tablets just once a day and if she has no bad reaction in a week then up that to two 1/2 tablets a day. If no adverse effects then increase by 1/2 tablet every week until taking 1 tablet three time a day.

So here we are, a week and a day after we returned from OHSU and, touch wood, Jean has had no adverse effects and is now on two 1/2 tablets a day.

But a postscript to that consultation with Dr. Nutt. At the very end I said that I had two questions. Dr. Nutt welcomed me to ask them.

“My first question is to do with the trend for PD. Is it getting worse?”

“Paul, here in the USA we are seeing a slow but definite decline in the incidence of Parkinson’s. What was your second question?”

“Dr. Nutt, my next question was whether or not science was pointing a finger at the cause of Parkinson’s disease?”

He replied without hesitating: “We are seeing a strong correlation between pesticides and Parkinson’s disease.”

Upon hearing that, Jeannie immediately spoke up recalling her times out in the Mexican fields when the crop-spraying aircraft flew right overhead. Adding that she had at times been drenched by the spray.

But, please, let us not forget: Association is not causation!

That’s enough for today. Because I was going on to include information about the importance of exercise. About managing one’s life really well. About the importance of diet and overall health. In a sense, not just for PD sufferers but for anyone the wrong side of 60 years old!!

That will be coming along soon!

I will close by thanking everyone at OHSU. The quality of care, attentiveness and experience of the staff backed by world-class resources was second-to-none!

To be in their system, so to speak, is a privilege.

24 thoughts on “Jeannie’s PD journey

  1. Thanks for sharing Paul. Most interesting.
    As for pesticides, my friend was diagnosed with Non Hodgkin’s Lymphoma, which has been linked worldwide to pesticides. ( Many agricultural workers are affected). Fortunately, after chemotherapy, she has recovered her health.
    And now pesticides and PD. And so many other illnesses and cancers no doubt.
    And the death of bees. 😔
    Good on Jean for doing the right things and keeping well. Give her a big hug from me.

  2. Thank you both for sharing your journey to find answers to Jean’s symptoms. I found the alternate medicine exercise (before consulting Dr Nutt) interesting. I have worked in the alternate medical field, combining massage therapy, hydrotherapy, Reiki, and a smattering of other things. I always felt that it was a useful addition to mainstream medicine (especially if it could effectively reduce drug use, pain and stress), but I also had a healthy respect for what it couldn’t do, which was in the diagnostic realm which these days, does require some specialization.

    While I do not have PD, and hopefully won’t, I do have a very compromised immune system due in part to exposure to a large number of immunizations taken simultaneously (for a trip to South America), and an allergy to the carrier (Albumin from eggs). I have never been quite the same since then. A Vegan diet helps, and keeping active as much as I can, and I manage things.

    The poisons we use to kill everything from bacteria to insects, build up. They do not kill us outright like the smaller pests, but they do accumulate in our organs and bones. As we age, they leach out, affecting our brains, and our bodies with weird, debilitating effects. The fact that doctor Nutt intimated that PD was decreasing in incidence, does reflect in the bans on poisonous substances, and the fact that the general population thinks twice before reaching for a bottle of insecticide.

    This is a great share, and so important for people to consider the things that they are exposed to on a daily basis. My previous partner used to say that “they wouldn’t sell it to us if it wasn’t safe,” as he handed me a bottle of Roundup to spray weeds in the patio cracks. We must not believe agro company lies, like the poor Indian woman who drank roundup to prove to her family that it was safe to use. She died an agonising death hours later.

    Love to you and Jean and hope for the future finding a way through PD. 💕

  3. Hi dear Paul, 2 things:
    1) Please stop using the expression “wrong side of 60/65/70 years old”. There is no wrong side to gathering years, just success and wisdom, hopefully gleaned. Saying age is “wrong” imparts the wrong mood to gathering years. It should always be viewed as a blossoming.

    2) The fact pesticides CAUSE Parkinson Disease was established BEYOND REASONABLE DOUBT by doctors from the Montreal (Quebec) area in the 1950s… The pesticide industry is culprit. The exact mechanism is now completely known. The Nobel was attributed to the Swede Arvid Carlsson for discovering the L Dopa treatment, the Lasker was attributed to the French Grenoblois Benabid and Pollak for deep brain stimulation (used if L Dopa becomes ineffective)….

    1. Patrice, I take your gentle chiding about my age to heart! You are so, so right. From now on there will be no more of “age is wrong” stuff; quite the opposite! Thank you.

      Your second item mentioned was invaluable knowledge.

  4. BTW, my “likes” have not been going through, for reason unknown, for a long time, so my lack of “likes” is not from lack of appreciation, and I like yours on my site…. 😉

  5. I’m so glad Jean is in such good hands. Thank you for sharing her journey and your insights, Paul 💕💐💕. There is no doubt in my mind that we have contaminated the planet and ourselves since the Industrial Age…. and it continues to get worse with chemicals and plastics. Our health is too high a price to pay for progress and profit. Love to you both 💛

  6. On the one hand this is sad news (confirmation of the diagnosis) and yet it’s very positive on her response to the medication. Very happy you found a specialist who can help with the treatment. Here’s hoping future news continues on a positive track. Hugs to you both.

  7. Thank you Paul for recounting the visit with the Specialist, with your clear narrative . Not easy to disclose I am sure..
    It sounds as if Jean is already doing very good things with her health and I am pleased she has found very good hands to take care of her condition..
    Sending continued love and well wishes your way.. ❤

    1. Thank you, Sue. I have another couple of post to write, on exercise and good health and on paradigms, then from then on just updated information as and when it comes along. Your love and well wishes are precious!

  8. This was an extremely informative post. I am relieved to hear that Jean and you are reaching out to every possible modality of health and healing possible. The two can work well hand in hand as do you and Jean. This disease can be a very difficult foe but you are both being so proactive that you can minimize it’s hold. I have a neighbor that has not spoken to me in the 4 years I lived here after I refused his offer of Roundup to kill my weeds. I told him I would not use chemicals of any nature on my yard and prefer everything natural. I am holding good thoughts for you both as you find ways to wrangle this beast of a disease into submission. Thank you for sharing any and all information.

    1. What a wonderful addition you have provided to today’s post. Jean has just off the phone after a telephone update with Dr. Mischley, an update that offered plenty of encouraging words. I spoke briefly with the good doctor about today’s post. She was most supportive and promised to email me details of other information. That has come through and will be shared in this place in due course.

      Your wise response to the offer of using Roundup will hopefully be copied by many others. Fabulous!

    1. Thank you, Janet. Plus, a very warm welcome to this place. I shall post updates from time to time some of which will detail Jean’s status with regard to PD.

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