Tag: Dr. John Nutt

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.

Managing change

Following on from yesterday’s post.

I paused yesterday’s post by writing this:

In addition, Dr. Lee said to always THINK BIG! Big in voice, big in attitude, big in stature.

Finally, let me share with you what was posted on the Visible Procrastinations blog back in 2009. Reposted with the author’s permission.

Change.

Change is unavoidable for everyone one of us. Some changes are certainly wonderfully positive ones. Others not quite so. But the thing about change is that whatever the reason in one’s life for having to experience change it has a disruptive effect.

Today’s post leans heavily on that Visible Procrastinations (VP) post but the main theme is fully endorsed by yours truly!

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My Change Journey

Some notes from My Change Journey: This workshop is designed to help you understand your emotional and psychological needs during times of change and strategies you can use to take control of your own change journey. It also focuses on creating opportunities and seeing possibilities in the new world of work.

change – an event that occurs when something passes from one state or phase to another;

transition – the act of passing from one state or place to the next

Seeing the Big Picture

Many times we do not always see the bigger picture.

There are two examples of that; the first is this rather delightful 5-minute video that is just a bit of fun to watch. The second comes along shortly.

Experiencing Transitions

When change is implemented at any level in an organisation or personally, people typically respond by moving through a series of phases. People will spend different times in each phase. This is a crucial thing to understand and is at the heart of why change is always disruptive and frequently unsettling.

Take a few moments to reflect on the next item; this three-phase framework.

Bridges (1995)William Bridges (1995) Bridges’ three-phase transition framework: The first phase, the Ending phase, is about letting go of an old identity, an old reality or an old strategy. The Neutral Zone is akin to crossing the wilderness between the old way and the new. The final phase is making a new beginning and functioning effectively in a new way.

I am going to reinforce this message because it underpins everything to do with us understanding the business of change. Especially when we have to deal with unsettling events!

Ending – Letting go of what has been.

Neutral Zone or The Bridge – yes, it does feel like a ‘wilderness’ in some circumstances. Give it time!

Starting – Embracing the new way and making it work really well for you.

The key is to allow each phase plenty of time to take effect; frequently much longer than one senses!

The Process of Transition

John Fisher’s model of personal change – The Transition Curve – is an excellent analysis of how individuals deal with personal change.
J.M.Fisher’s ‘transition curve’

(More may be read here:  http://www.businessballs.com especially here: http://www.businessballs.com/personalchangeprocess.htm )

Influencing and exploring options

“You should only worry about things that are within your sphere of influence.”

This is such a key message. So take a long hard look at the things that make you anxious or worry you. Then clearly identify those things over which you have no or very little control. Then walk away from them!

There’s a great book: The Seven Habits of Highly Effective People, from which is taken:

You should only worry about things in your “sphere of influence.” If you have no control over certain aspects of your life, why bother worrying about them?

circle of concern

Mental Models: our way of seeing the world

(NB. This includes the second example of seeing the bigger picture)

Mental models are usually tacit, existing below the level of awareness. Another way of thinking about them is as a paradigm. This is a big topic and I am going to return to it by way of a separate post, probably one day next week.

But this second example of not seeing the bigger picture is also stirring the deeper waters of one particular personal paradigm.

Take 1000
add 40 to it
Now add another 1000
Now add 30
Add another 1000
Now add 20
Now add another 1000
Now add 10
What is the total?
Did you get 5000? The correct answer is actually 4100.

P.S. The number of times I did this, adding it up in my head, and finding it came to 5000. Then I did it on a calculator and it came to 4100. Talk about the eyes looking but not seeing!!

But there’s an important message. If you, as me and Jeannie did first time around, made it 5000 then you are demonstrating that what your eyes see, interpreted by your brain, isn’t necessarily correct.

So if it’s important: Give it a coating or two of thought!

Moving on!

The Fifth Discipline Fieldbook by Peter M. Senge

References

Amado, G., & Ambrose A. (Eds.) (2001) The Transitional Approach to Change. London: Karnac

Amado, G., & Vansina, L. (Eds.) (2004) The Transitional Approach in Action. London: Karnac

Bridges, W. (1998) Managing Transitions: Making the Most of Change London: Nicholas Brealey.

Bridges, W. & Associates (online resources to articles and assessment tools for ‘Managing Transitions’) www.wmbridges.com

Bunker, K. (2008) Responses to Change: Helping People Make Transitions San Francisco: Jossey-Bass

Covey, S.R. (1990) The Seven Habits of Highly Successful People Melbourne: The Business Library

Duck, J. (1993) Managing Change: the art of balancing Harvard Business Review, 71 (Nov/Dec): pp.109-118

Ethical work and life learning (Free online education for ethical work, business, career and life learning; training materials for entrepreneurs, organizations, seflf-development, business management, sales, marketing, project management, communications, leadership, time management, team building and motivation) www.businessballs.com

Fischer, P. (2008) The New Boss: How to Survive the First 100 Days. London: Kogan Page.

Johnson, S. (1999) Who Moved My Cheese? An amazing way to deal with change in your work and in your life London: Vermillion

O’Hara, S. & Sayers, E. Organizational change through individual learning. Career Development International, 1 (4): pp. 38-41

Rogers, C.R. & Roethlisberger, F.J (1991) Barriers and gateways to communication. Harvard Business Review (Nov-Dec): pp.105-111

Stuart, R (1995) Experiencing organizational change: triggers, processes and outcomes of change journeys Personnel Review, 24 (2): pp.3-88

Vansina, L. & Vansina-Cobbaert, J-M (2008) Psychodynamics for Consultants and Managers: From Understanding to Leading Meaningful Change. Chichester: John Wiley & Sons

Williams, D (1999, 2008 update) Transitions: Managing Personal and Organisational Change.

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Tomorrow I cover the specifics of what took Jeannie (and me) to OHSU in Portland and the consultation with Dr. John Nutt and what flowed from that!

I so hope you found in today’s post some nuggets of personal gold for you!

I will close with a quote from the BrainyQuote site:

Facing up to P.D.

Revisiting that personal journey.

I deliberately chose that sub-heading because Wednesday’s post is going into the details of a consultation that Jean had with Dr. John Nutt, MD, a neurologist at the Oregon Health and Science University (OHSU) in Portland, last Monday, 9th July.

Jean wants me to share the details with you because it is quite likely, nay, almost certainly, that some of you dear readers know of someone close to you that has Parkinson’s Disease (P.D.).

The balance of today’s post, to be continued tomorrow, is a reposting of something I published on February 24th, 2016.

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 Life is a one-way track.

Those of you who follow this place on a regular basis know that last Friday I published a post under the title of Friday Fondness. You will also know that later that same day I left this comment to that post:

Sue, and everyone else, we returned from seeing Dr. Lee, the neurologist, a little under two hours ago. Dr. Lee’s prognosis is that Jean is showing the very early signs of Parkinson’s disease, and Jean is comfortable with me mentioning this.

Everyone’s love and affection has meant more than you can imagine. I will write more about this next week once we have given the situation a few ‘coatings of thought’.

Jean sends her love to you all!

Thus, as heralded, I am going to write some more.

You would not be surprised to hear that the last few days have been an emotional roller-coaster, for both Jean and me. Including on Monday Jean hearing from our local doctor here in Grants Pass, OR, that a recent urine test has shown that Jean has levels of lead in her bones some three times greater than the recommended maximum. While our doctor is remaining open-minded it remains to be seen whether Jean is exhibiting symptoms of lead poisoning, whether the lead is a possible cause of the Parkinson’s disease (PD), see this paper, or whether it is a separate issue to be dealt with.

However, I want to offer some more from the consultation that Jean had with the neurologist Dr. Eric Lee last Friday. Shared with the full support of Jean who has read the whole of today’s post yesterday evening; as she does with every post published in this place.

But before so doing, please understand that while I was present throughout the complete examination of Jean, what you are about to read carries no more weight than that of any casual onlooker. If you are at all affected by any of the following make an appointment to see your own doctor!

Jean’s examination lasted for about an hour. It consisted of a great number of checks and tests on how her body responded to many different tests and stimulations. At the end of the examination Dr. Lee said that while he wasn’t 100% certain the balance of probability was that Jean was demonstrating the very early signs of PD. For example, showing such signs as walking and not swinging both arms in a normal, balanced manner. Or having a very slow blink rate. Then she was exhibiting some difficulty with rapid finger-to-thumb taps.

However, Dr. Lee did say that Jean was at the very early stages of PD and that we would have to wait another six months to see if the PD indicators were firming up. He also said that he had PD patients who had had the disease for twenty, even thirty years. Some of the general indicators that PD is progressing include a stooped gait, decreasing size of handwriting, and a quieter speaking tone. The NINDS website has more information on this. Here’s a little of what they explain about PD:

What is Parkinson’s Disease?

Parkinson’s disease (PD) belongs to a group of conditions called motor system disorders, which are the result of the loss of dopamine-producing brain cells. The four primary symptoms of PD are tremor, or trembling in hands, arms, legs, jaw, and face; rigidity, or stiffness of the limbs and trunk; bradykinesia, or slowness of movement; and postural instability, or impaired balance and coordination. As these symptoms become more pronounced, patients may have difficulty walking, talking, or completing other simple tasks. PD usually affects people over the age of 60.  Early symptoms of PD are subtle and occur gradually.  In some people the disease progresses more quickly than in others.  As the disease progresses, the shaking, or tremor, which affects the majority of people with PD may begin to interfere with daily activities.  Other symptoms may include depression and other emotional changes; difficulty in swallowing, chewing, and speaking; urinary problems or constipation; skin problems; and sleep disruptions.  There are currently no blood or laboratory tests that have been proven to help in diagnosing sporadic PD.  Therefore the diagnosis is based on medical history and a neurological examination.  The disease can be difficult to diagnose accurately.   Doctors may sometimes request brain scans or laboratory tests in order to rule out other diseases.

But here’s the good news regarding my darling wife – there are three things that Dr. Lee strongly recommends:

  1. Hang on to a positive mental attitude for the body actively produces dopamine when in a positive mental state.
  2. At least 30-minutes of good aerobic exercise three times a week,
  3. And physiotherapy.

In addition, Dr. Lee said to always THINK BIG! Big in voice, big in attitude, big in stature.

Finally, let me share with you what was posted on the Visible Procrastinations blog back in 2009. Reposted with the author’s permission.

ooOOoo

That article first seen on Visible Procrastinations will be republished tomorrow. Once more I must stress 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!