9th… From Out-Thinking… When a change in care is needed

What follows is excerpts from a VERY, VERY LONG blog entry from ‘Out- Thinking Parkinson’s’ Detailing how Dr Gary Sharpe, Phd became terribly ill, poisoned by his PD medications, and the ensuing journey, hospitalization, failures from medical personnel, diagnosis, treatments and subsequent relocation. (As a pwp, I found Dr. Sharpe’s detailed story very fascinating and insightful and thus, I encourage readers to click on the link at the end of this blog entry.)

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“During my stint in hospital, I had plenty of time to think, and gather experiences and insights, about what my care needs actually are now, which I had somewhat buried my head in the sand about before. As perhaps these needs will go for other people with PD more generally, I have therefore sought to spell these out here in case they help fellow people affected by PD start considering their own needs too.”

The overarching theme of these needs is “Feeling Safe”.

1. I realized from being on the hospital ward that having people around me 24/7 is actually very important. This was confirmed to me during a week when I was isolated in a side-room off the ward, due to an episode of diarrhea. I felt much more vulnerable, much more anxious, and much more depressed than when I was on the ward. Indeed, I realized that when I was living at home with my parents, I would feel very unsafe if they went out and left me alone even for a couple hours – I would literally become scared stiff and my PD drugs were much less likely to work. This was also underlined in a moment of epiphany during a counselling session with a hospital mental health team member while in isolation. I burst into tears and cried “I’m so lonely; I’m so scared to be on my own”.

2. I need someone else to take control of my medicine, since if I am left to self-medicate, I will once again start self-poisoning and over-dosing. I know I will be unable to resist reaching for extra drugs whenever I feel fearful enough, am having a bad “off” period, or if I panic, and the rising drug burden cycle would begin again. I need this external control to be reliable enough such that the medicine will be delivered reliably on time, due to my massive anxieties around this. The complex medicine regime I have on leaving hospital, with both scheduled and “when-needed” PD pills and injections and painkillers (I’m still on morphine, but am trying to wean myself off it) means that someone would need to be on hand virtually every hour of the day.

3. I require good, nutritious food preparing for me and need to get back to, and then maintain, a healthy weight. This includes encouragement to eat, and reassurance to that I shouldn’t feel belittled in the instances I need assisted feeding when I am completely “off” during meal times.

4. I need caregiving by people who have a good understanding of the disease and my condition, and who don’t ignore, mock or disbelieve me – implicating that it is “all in my head”, which occurred a lot in the hospital, for example, is anathema to me and causes my symptoms to increase. I need knowledgable external oversight and monitoring of my physical and mental health, intervention if things start to go awry again, and reassurance and a calming voice when I frequently get over-anxious.

5. I need to be allowed and encouraged to move around and exercise/stretch while “off” to prevent rapid disease progression, not to be confined to bed or bedroom for fear that I might fall or freeze, yet be quietly watched over when I do try to mobilize.

6. I need the opportunity, encouragement and any required help to engage in plenty of social activities, to go outside and further afield, and to meet new people, without having to schedule such opportunities. I need caring oversight to ensure I don’t social isolate myself nor become agoraphobic again.

7. I need the opportunity, encouragement and any required help to engage in plenty of stress relieving and management activities, such as arts and crafts, singing, dance and music therapy, puzzles, etc.

http://www.outthinkingparkinsons.com/articles/hospital

8th… From Out-Thinking… Hands

“The hands and fingers, and their use or lack thereof, have key roles either in the rate of degeneration or in progressive symptom reduction.”

“If no interventions are put in place to remedy the situation, the hands of people with PD become stiffer, with fingers more curled up and eventually the ability to pick things up, grasp or push and pull is lost…. Under chronic stress the use and senses of our hands become inhibited, as the body draws its energies inwards to protect vital organs: while we can survive the loss of a limb or two to a lion, we can’t survive having our guts ripped open, so our fingers are de-prioritized from the brain and body’s resources. When unnaturally stressed too frequently or for extended time, due to the pressures of modern life for example, this loss of dexterity and proprioception (sense of relative position and effort needed to move) in our hands, and loss of senses of touch, can become permanent. The nerve fibre connections responsible become harder to fire up as the networks of motor and sensing neurons continue to atrophy. Indeed, the diminishing of the range of movement of the hands is one of the very first signs of PD: one the earliest symptoms which become obvious in people developing PD manifests as handwriting getting smaller and smaller.”

“This lack of ability to use the hands can have knock-on negative effects for the senses and muscles in other parts of the body too, since it also inhibits self-touch. In particular, it may become more difficult to touch/compress/hold pain points of the body, thus amplifying these pains and problems, since touching pain points is a natural pain relieving mechanism and down regulate excited states of the Nervous System. Self-touch lets our Nervous System know we have heeded the internal alarm and have paid attention. Indeed, in his book on Dystonia, Dr Joaquin Farias emphasizes the importance of touching the affected muscles.”

“Conversely, the use of our hands for complex tasks is “stress interrupting”, so using our hands in specific ways can be calming on the Nervous System. This is especially true when using the hands for tasks which require use of other senses, such as hand-eye-co-ordination or clapping along to music, which bring into play other parts of the brain. Indeed, those practices which we now know can delay the progression and aid symptom reduction in people with PD all appear to involve the hands intimately. Riding bicycles, unlike walking, involves the handle bars and the breaks, while walking with poles and sticks seems to increase the benefit of that exercise. Tai-Chi, Yoga, Qi Gong, Gyrokinetics all also focus heavily on hand shaping and on the hands leading movements. Ballet involves the expression of the hands. Then there is boxing exercise, which is proving one of the most beneficial forms for PD, which could not be more hands focused.”

“Therefore hand exercises and finger stimulation are critically important for preventing the ravishes of neuronal atrophy in PD, and also to strengthen “para-sympathetic tone”, enhancing the ability to maintain a relaxed state, so important for people affected by the disease. Indeed, the story of Chris Lacey is intriguing, with reports he is now free from PD symptoms after intensive carving of chess pieces as a hobby.”

“The importance of hands and fingers is hence profound for those of us who have been diagnosed with chronic disease.”

7th… From Out-Thinking… Cranial nerve exercises

“Here is a set of quick neural exercises and fast workout for maintaining and strengthening the Cranial Nerves, to support our health, growth, and restoration, and assist in long term progressive symptom reduction.”

PROGRAMME GUIDE

[I couldn’t transfer the video, so what follows is the url for the entire article]

http://www.outthinkingparkinsons.com/articles/cranial-nerves

“1. Watch and regularly review the video, to ensure a good understanding and improve ability to visualize the specific muscles which we are seeking to innervate with each exercise.”

[I viewed the video, and although it shows the muscles … and perhaps shows the good doctors knowledge and understanding of said muscles, I think we can all follow the guide below, even without viewing it.] your choice. 🙂

“2. Take a few minutes to perform the exercise routine just once or twice a day, do not overdo, especially initially – less is more, consistent practice every day is more important.”

“3. Hold each expression made for a few seconds, and concentrate (embody) the feelings and sensations created, then relax face before moving on to next.”

“4. If particular exercises are difficult to perform, use fingers to assist, or close eyes and simply visualize/imagine making the expression and the muscle movement – even micro-twitches will be beneficial.”

ADDITIONAL OPTIONS

1. Look in the mirror while performing the workout, and consciously notice/observe changes to face.

2. Gently place finger tips on each muscle which is being innervated.

3. Rotate daily between exercising left side only, right side only, and both sides.

4. Find a partner/guide with a healthy Social Engagement/Cranial Nervous System, and follow/mirror/mimic their facial expressions as they go through the routine, exploiting the Mirror Neurons which fire when watching other people move.

FACIAL NERVE EXERCISES

1. Wrinkle forehead.
2. Close eyelids gently and relax face.
3. Close eyes tightly.
4. Draw eyebrows down and inward.
5. Frown and wrinkle top of nose.
6. Flare nostrils out.
7. Draw nose downwards with septum.
8. Close lips tight together.
9. Purse lips as if kissing,
10. Purse lips as if whistling.
11. Puff up cheeks, then slowly blow out breath.
12. Draw corners of the mouth outwards with lips closed.
13. Draw corners of mouth upwards with lips closed.
14. Draw corners of mouth downwards with lips closed.
15. Open lips and show upper teeth by curling/lifting upper lip, opening nostrils.
16. Starting with lips closed, push lower lip out as if pouting.
17. Open lips and show lower teeth, by pulling lower lip down.
18. Smile broadly, showing teeth.
19. Raise ears (for most people this will require manual assistance with fingers).
20. Draw ears back (“).
21. Draw ears up and forwards (“).

6th… From Out-Thinking… neck and shoulders

11 ACCESSORY NERVE

Cranial Nerve 11 – “supplies specific muscles which tilt and rotate the head, and the trapezius muscle, which works the scapula, including for shoulder elevation and movement of the arm away from the body.”

“Neck and shoulder problems are extremely common in PD. For example, “frozen shoulder” is a very common initial mis-diagnosis, as was the case for myself. The head and shoulder movements mentioned above are particularly difficult for PwP to access.”

……………………………..This article gave me new insight. Eight years ago I had been experiencing shoulder pain. After turning 65, and qualifying for insurance, I mentioned the discomfort with trying to lift my arm. The physician suspected rotatory cuff and sent me to physical therapy. I went, but didn’t see any benefit. Then, after moving to Florida, at age 68, I visited with a chiropractor who, using pressure points while rotating my arm, showed me how I could get pain relief. Although the fix was only temporary, it was appreciated.

Funny thing is… after receiving my diagnosis for Parkinson’s and experimenting with the keto diet and trying hemp oil from the health food store…both my TMJ and my shoulder pain went away… as well as the sores at the corners of my mouth (presumably a side effect of my drooling). I switched up my diet after loosing too much weight on the keto diet… and previously had quit using the hemp oil. The sores at the corners of my mouth have returned, but so far, neither the TMJ nor the shoulder pain. I count my blessings.

5th… From Out-Thinking… Gut

10 VAGUS NERVE

“…it’s a unique cranial nerve in that it innervates the trunk, the torso, the organs, it actually supplies all of the major trunk organs and it’s a bi-directional nerve -we call it a mixed nerve. It’s got fibers going from the brain to the organs, controlling them, and then it’s got fibers going from the organs to the brain, which is a way of letting the brain know what’s happening in the torso, in the body,”

The Vagus nerve is by far the largest part of the “parasympathetic” nervous system.

“I first discovered the Vagus Nerve (VN) when I was researching how Parkinson’s Disease begins in the gut: It became obvious to me that the VN must indeed have a very primary role in PD.”

“Since Chronic Fatigue is a major symptom of Parkinson’s Disease too, what this line of research is revealing should therefore be of significance relevance to PwP. Indeed, viral vectors have also been increasingly implicated in the onset of PD over recent years.”

From an interview with: HARVARD NEUROSCIENTIST DR. MICHAEL VAN ELZAKKER: CHRONIC FATIGUE VAGUS NERVE LINK

“The vagus nerve actually detects cytokines in the periphery and then sends a signal to the brain, essentially letting the brain know that the body is sick.”

“There were some important studies done … where they would pick a rat and inject them with E. coli, say, some sort of a bacteria that would make the rat sick. And of course, the rat acts sick. It doesn’t run on a wheel, it doesn’t eat as much, it doesn’t socialize. That’s true unless you cut the vagus nerve, and then the rat acts normally. It’s essentially, its brain doesn’t know that its body is sick.”

“That’s one of the really important functions of the vagus nerve, of which there are many, but that’s one of the important functions of the vagus nerve, the sensory vagus nerve that goes from the organs to the brain.”

“… the vagus nerve innervates all of the trunk organs, and that includes the heart… the vagus nerve that comes from the brain to the organs is called the motor vagus or the efferent vagus, and that actually does control heart rate and that’s one of the main ways that we can measure vagal tone is what’s called heart rate variability and it’s the difference in heart rate between breaths. That’s very much a vagus nerve thing”

4th… From Out-Thinking … ears and tongue

8 VESTIBULOCOCHLEAR NERVE

Cranial Nerve 8 – “the auditory vestibular nerve, transmits sound and balance information from the inner ear to the brain.”

“PwP have very poor balance and may experience dizziness. These symptoms become more pronounced if the disease is allow to progress. PwP are often hyper-sensitive to noise and can become averse to listen to music.”

………………………….That explains so much!! I need noise going… either white noise, or background noise from TV or radio, to help me cope with little noises. Even to hear myself eating causes agitation. It is so difficult to keep calm and say nothing, when someone swishes fluid around in their mouth. I hear people swallow. I yelled at a guest, because they were eating popcorn before I could get the noisy fan turned on to drown out the noise. grrrr. now I understand.

TONGUE

9 GLOSSOPHARYNGEAL NERVE

Cranial Nerve 9 – “connected to tasting, swallowing, salivary secretions and visceral pain, supplying the tonsils, pharynx, middle ear and the posterior third of the tongue.”

“Loss of sense of taste is strongly associated with PD symptoms, as is dry mouth, thickened saliva and/or dribbling. Visceral pain (dystonia) is also frequently involved.”

…………………………I’m not sure how much ability to taste I might have lost. Just like a person doesn’t realize how impaired their vision is, until they get fitted with a proper lens. But I have noticed the cashews I have always enjoyed seem flavorless. The biggy here, for me, is the drooling. When I am focused on a task, my mouth is relaxed… I forget to swallow, until the drool splashes on my hand.

TONGUE, MOUTH

12 HYPOGLOSSAL NERVE

Cranial Nerve 12 – “controls tongue movements required for speech and swallowing, including sticking out the tongue and moving it from side to side.”

“Speech problems are another classic, major and degenerative feature of PD, as are issues with swallowing.”

……………………………… Although I have soft speech and occasional choking issues, I think my tongue still works reasonably well.

3rd… From Out-Thinking … Eyes

2, 3, 4, 6 OPTIC NERVE, OCULOMOTOR NERVE, TROCHLEAR NERVE , ABDUCENS NERVE

Cranial Nerve 2 – “a paired nerve that transmits visual information from the retina to the brain.”
Cranial Nerve 3 – “supplies muscles that enable most movements of the eye and that raise the eyelid and enables the ability to focus on near objects as in reading.”
Cranial Nerve 4 – ” a motor nerve that supplies the superior oblique muscle” which controls turning of the eye in the socket, in particular the actions of looking down or towards the nose.
Cranial Nerve 6 – “a motor nerve that supplies the lateral rectus muscle of the eye” which controls turning of the eyes outwards, away from the nose.“

……………………………….Since my being diagnosed with oblique double vision led me to finally receiving the diagnosis, I found it worthwhile to wade through the voluminous amount of goblty gook/geek speech. What I found fascinating was the reference to visual acuity, because back over 20 years ago I participated in something called applied kinesiology (muscle testing). Then a day came that I could no longer trust the answers I got. Various people came to the same conclusion… my polarity was reversed. Those same people told me how it could be made right. BUT traditional efforts failed to right my polarity. Then a doctor deduced… through muscle testing, that my problem was related to visual acuity. He said, “Whatever that is?” Twenty years later, I found the answer. So, does that mean the disease has been progressing in me for 20 years?

“Eye and vision problems abound in Parkinson’s Disease, from dry eyes, involuntary closing of the eye lids, to fixed and unfocused eyes. Visual problems that have been strongly correlated with PD include issues with: visual acuity; contrast sensitivity; color vision; motion perception; visual disturbances and hallucinations. Physical and structural changes to the eye and retina have also been found in people with Parkinson’s, as determined by a number of modern eye examination methods. Therapies which involve injecting small amounts of dopamine into the eyeball have proven successful in PD, and strategies based on this are being developed”

After browsing 14 paragraphs of goblty gook… (from the link above… Eye and vision problems)

“Appreciation of the multiple sites of, for instance, contrast modulation is vital if we are to localize Parkinson’s disease-specific alterations in such processing to the anterior or posterior visual system.”

(and after another 7 large paragraphs of goblty gook) … “In other words, dopamine is a chemical messenger for light adaptation, promoting the flow of information through (neurons in the retina) cone circuits while diminishing that through rod circuits.”

(and after an additional 6 paragraphs of goblty gook) addressing Visual Acuity … “in generating a working hypothesis for the role of dopamine in the retina and the subsequent changes seen in Parkinson’s disease.”

(2 p goblty) “As temporal frequency increases, contrast becomes more difficult to perceive, resulting in flicker fusion, the point at which the stimulus appears not to change at all.”….. “Hence, at least from a retinal perspective, visual acuity and contrast sensitivity will depend not just on ‘optical’ factors … but also on ‘neural’ factors.”

“There can be little doubt that dopaminergic deficiency plays an important role in retinal function, as seen in Parkinson’s disease.”…

“Contrast sensitivity is vital for a range of day-to-day activities and diminished contrast sensitivity has been implicated in falls, difficulties in reading and driving performance, as well as with activities of daily living.” further more “Parkinson’s disease patients with visual hallucinations had significantly worse contrast sensitivity than those without hallucinations, suggesting a putative role for retinal dysfunction in the development of visual complications in Parkinson’s disease.”….

“Deficits in colour vision in Parkinson’s disease are also well documented and suggest involvement of different colour-opponent pathways in the disease process.”….

“In addition to changes in visual acuity and contrast sensitivity, perception of motion is also affected in Parkinson’s disease.”…. “However, group differences persisted for measures of visual speed of processing and alternative measures of visual attention, supporting a cortical contribution to such perceptual disturbances as well.”…

In conclusion… “A better appreciation of how structural disease of the eye contributes to disability in Parkinson’s disease is overdue, particularly as effective treatments exist for many of the concomitant ocular disorders that may contribute to visual symptoms in Parkinson’s disease. Successful intervention therefore offers the prospect of improvements in the quality of life of Parkinson’s disease patients and their carers.”

2nd… From Out-Thinking… Cranial Nerves … TMJ

FACE

5, 7 TRIGEMINAL NERVE, FACIAL NERVE

Cranial Nerve 5 – “a nerve responsible for sensation in the face and motor functions such as biting and chewing.”

Cranial Nerve 7 – “emerges from the brainstem, controls the muscles of facial expression, and conveys taste sensations from the anterior two-thirds of the tongue and oral cavity.”

“A blank or expressionless face is one of the classic signs of Parkinson’s Disease, used as a principle diagnostic point by neurologists. If this is allowed to progress, the face can take on a “plastic mask” appearance: featureless (puffy), with a “waxy” or shiny appearance. Problems chewing, over-clenching and misalignment of the jaw are common symptoms too. Indeed, temporomandibular joint (TMJ) disorders are strongly correlated with PD.”

(I have extracted what follows from the preceding link on TMJ) TMJ was one of the reasons I have struggled to eat… but until now, I did not understand the correlation.

“A systematic review by Medlicott and Harris found that active exercise, manual mobilizations and postural training may be effective in treating temporomandibular joint (TMJ) disorders.¹ However, many therapists choose not to treat the condition unless the client is experiencing pain. I believe this represents a missed opportunity to address anatomical and functional problems in their early stages.”

“When the head and neck move forward in the sagittal plane, the brain’s visual proprioceptors cause the occiput to backward-bend on atlas. This remarkable brain stem reflex (Law of Righting) will cock the head back to level the eyes against the horizon even if it means ravaging the neck.”

“Sustained isometric contraction in the suboccipitals reflexively weakens the longus capitis and colli antagonist muscles and places the entire nervous system in a heightened state of alert. With the head and neck jutted forward, passive tensile forces develop in the hyoid and digastric muscles.”

……………………..The brain, in essence, is trying to compensate for the forward head carriage by pulling back on the cranium using the jaw muscles

1st… From Out-Thinking Parkinsons

I discovered a sight that addresses symptoms and explanations which I have found nowhere else. I have divided the things I found most interesting to be shared over the next week of posts.

“Dr Gary Sharpe, Phd, is a scientist and engineer by background, diagnosed with Early Onset Parkinson’s Disease in 2009. After six years of dying inside, he started “Out-Thinking Parkinson’s” in January 2016 in order to pursue pragmatic and practical solutions towards progressive symptom reduction for people with Parkinson’s Disease. Today, Out-Thinking Parkinson’s has become a major resource, where Gary and colleagues from around the world, who also have an insider’s perspective of PD, share their knowledge, philosophies and experience of living well with PD, and, also, record their stories of recovery.”

http://www.outthinkingparkinsons.com/

“Many of the major and common symptoms of Parkinson’s Disease are not very well explained by the “death of dopamine producing cells in the Substantia Nigra” scenario. However, atrophy of the Cranial Nerves in people with Parkinson’s (PwP) does very straightforwardly explain most of these major secondary symptoms, and, I believe, does so in a very common sense way.”

“This conclusion is important, because if correct, it means that no chemical “cure”, which addresses only the dopamine production issue, will, by itself, fix the causes of the other symptoms too. Indeed, undoing atrophy of any kind in the brain and body takes time and the patient application of suitable stimulation, exercises and therapies. I therefore recommend that we PwP do not just sit and wait for “the lure of cure” to ever materialize, but instead to err on the side of caution: I believe we need to begin the process of bringing our atrophied brains and bodies back from the brink, soonest.”

“Below, (i.e. within the week of posts) I also present a number of suggestions for Cranial Nerve stimulation techniques, which should help us in this regard, if we apply them daily, over the long term.”

NOSE

1 OLFACTORY NERVE

Cranial Nerve 1 – “transmits nerve impulses about odours to the central nervous system, where they are perceived by the sense of smell; the olfactory nerve is somewhat unusual among cranial nerves because it is capable of some regeneration if damaged.”

“The loss of sense of smell is one of the earliest manifestations and cardinal symptoms of PD.”

………………………………………..I can’t say how much my sense of smell might be impacted, but I have retained some. 🙂

Progress Report

I am pleased to report, things look like I am accepted for the study. I have the option to drop out at any point in time. They have received records from my primary care and were happy to see the MRI was current enough, another did not need to be scheduled. After reviewing what supplements I have been taking, I was asked to discontinue all herbals for the duration.

We return for a follow up interview and a thorough physical this coming Monday… which is anticipated to take around 3 1/2 hours. At that time, I anticipate being able to tour the 27 bed facility and ask all my questions, prior to officially signing on for the clinical trial.

All study participants are provided scrubs, so packing for me will be light. John will be provided sleeping accommodations and meals, but will also be free to leave to attend the temple, church, or whatever he chooses.

Any questions you think I should be sure to ask?