“I can’t Believe I Did That”

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Just looking back over my life… and what WE have accomplished:

My twin sister (my best friend) and I (and our parents) were guided by our older brother to discover the “Plan of Happiness” through the Church of Jesus Christ of Latter-Day-Saints.

“WE” learned to say “I” and gain our individual identities as daughters of a Heavenly Father which enabled us to move forward and have productive lives.

John (my other best friend) & I have been married for 51 years…planning for eternity. We raised ten wonderful children… who make us grateful each day for the time they shared with us, learning the joy of discovery, as well as the learning accomplished through trials and errors. They also are our best friends, along with their marriage partners.

And soon, now, our ‘baby girl’ [now a Mrs.] will be giving us our 23rd grandchild, their age ranging from 32 years to unborn. I have begun to write letters to each of them, in an attempt to keep connected thru the miles. I hope they will share ‘their memories’ with our great grandchildren.

We don’t have much, monetarily, to show for our lives as we transitioned through six different states. But we hope we have influenced lives for good as we were ‘professional parents’ for numerous special needs clients and transitioned to making friends of children and their parents as caregivers for our “Grandma’s Place Child Care” for fifteen years, prior to moving to Florida.

Also important through the years have been our extended family & Church family… many who have endeared themselves with us, either by serving us or allowing us the opportunity to serve them. Family are forever!

…I am also grateful for the 90+ followers of my blog … be ye PwP, caregivers of people with Parkinson’s or simply supporters of the quest for learning… I appreciate your support and words of encouragement.

I remember who’s daughter I am and I straighten my Crown!

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.)


“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.


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.”


“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.”



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. 🙂



PSP: Progressive Supraneuclear Palsy

No… I do not think I have the diagnosis… But since a person in one of the online communities for pwp typed she just has her Diagnosis changed to PSP and the signs and symptoms overlap with other neurodegenerative diseases, I felt I should document it.

Research is now showing that all symptoms of neurodegeneration are likely linked by common pathology, so that research may eventually unlock the secrets of more common illnesses like Alzheimers and Parkinson’s

“Last month, a terrific article was published on progressive supranuclear palsy (PSP) in a nursing journal. The article shares a list of symptoms in the four stages of PSP from thePSP Association, based in the UK. The four stages are:

* early stage
* mid stage
* advanced stage
* end of life stage

The symptoms are copied below. I’m sure you can overlook the British spellings.”

Early stage:
May present via the fracture clinic, falls services, eye specialist or speech and language therapist. The early stage typically spans years 0-1.

> Ambulant.
> Occasional falls.
> Unsteadiness and poor balance.
> Possible visual problems affecting ability to read.
> Voice changes, for example reduced volume.
> Mood changes.
> Reduced socialising.
> Changes in mood and behaviour, including apathy and anxiety.

Mid stage:
Many people reach this stage before diagnosis. Consider discussing advance care planning and advance decisions to refuse treatment. Consider referral to palliative care services. The mid stage typically spans years 2-3.

> Ambulant with aids.
> High risk of falls and injury.
> Visual problems affecting self-care abilities, for example eating and walking as unable to move eyes to see.
> Speech increasingly unintelligible.
> Inability to initiate conversation.
> Impulsivity (risky or impulsive behaviour).
> Apathy.
> Dysphagia.
> High level of supervision required.
> Increasingly socially withdrawn.

Advanced stage:
Patients should be on GP palliative care register and have access to specialist palliative care.
The advanced stage typically spans years 3-6.

> Mobility significantly compromised, probably chair bound requiring a wheelchair for mobility.
> Significant visual problems.
> Significant muscle stiffness.
> Significant communication problems, but probably still able to understand.
> High risk of aspiration and pneumonia as a result of dysphagia.
> Pain.
> Increasing periods of sleepiness.
> Incontinence.
> Severely withdrawn socially.
> Dependent for most or all aspects of care.

End of life stage:
This stage is difficult to detect, but may be indicated by reduced levels of consciousness, inability to eat or drink, acute infection, a fall or major fracture, and rapid and significant weight loss. The end of life stage typically spans 6-8 weeks.

> Severe impairments and disabilities.
> Rapid and marked deterioration in condition.
> Decisions with regard to treatment interventions may be required, considering an individual’s previously expressed wishes (advance decisions to refuse treatment).TH


This presentation was given by Joseph H. Friedman MD at the May 29th, 2018 World Parkinson’s Congress

“We all misperceive things. A common example is the sensation that the world is turning after we spin ourselves quickly around and then stop suddenly. It can be so severe that we may even fall down. In Parkinson’s disease (PD), there are a number of misperceptions that may occur as part of the disease, and may seem puzzling to the person with Parkinson’s (PWP) and the family. The misperceptions usually affect the person with PD, but there are misperceptions by others concerning the PWP.”

……I went through the LOUD protocol… but my psyce makes it very difficult for me to shout… I find it exhausting!

“Perhaps the easiest to understand is speech. Some PWP perceive their speech as being louder than it really is. This, of course, increases communication problems, and may contribute to the soft speech of PWP. In most cases of soft speech the patient is aware of the softness, but simply can’t muster the strength to make the vocal cords vibrate adequately, but in some cases, it occurs because the PWP thinks she is talking louder than she really is. The problem can be remedied by teaching them to talk louder than the PWP thinks is “necessary” because it isn’t as loud as it seems to the speaker. These PWP need to talk to the world as if they are all deaf.”

……I totally relate to this next paragraph. I blamed my poor spacial perception on my eyes…and double vision.

“Many PWP do not perceive spatial relationships as they did before the onset of PD. This occurs in a number of settings, and is particularly important for driving. It is not rare for a spouse of a PWP to complain that they are never in the center of the lane, but always to the right, or to the left, or sometimes too close to the car in front. When confronted, the PWP will disagree and confidently state that the car is, in fact, in the middle of the road, even when it isn’t. This occurs because of changes in parts of the brain that process visual input, which causes a distortion in what is perceived as the middle, or up, or down, causing the PWP to argue, because, to the PWP, the car is in the middle, but it really isn’t. It is difficult to convince PWPs of problems such as these when their own personal and repeated experience indicates that they are in the middle of the road. A similar problem occurs in PWP who think they are closer to a chair than they really are so they sit down, and almost miss the chair. Sometimes people will actually miss the chair, and injure themselves.”

…... I don’t use prescription drugs, so I don’t think this next paragraph relates to me.

“One of the most surprising misperceptions concerns dyskinesias. These are involuntary movements that may be fluid or jerky. They may involve any part of the body, face, head, hands, legs or trunk, and cause the person to look fidgety, like they are dancing in place, or uncomfortable. Michael J. Fox suffers from this, so you can see what these movements look like on his TV shows, or you can watch a You Tube video of PWP who suffer from these movements.  These are side effects of long term use of L-Dopa and are very common. They are not uncomfortable, although they may look like they are. The surprising observation is that people with this type of movement disorder, whether in PD or any other condition, often perceive the movements as much less than they really are, sometimes not recognizing that they are present at all. Even more surprising is the observation that when patients look in the mirror they do not see the movements, even though they are present, but when they see themselves on video they are usually quite surprised by how prominent the movements are. For unknown reasons, the brain perceives the movements only when they are not occurring at exactly the same time as they really are, so that the video is perceived accurately, but the live movements are not, even with a mirror. Of further interest is the observation that PWP almost always accurately perceive their tremors.”

……this one really surprises me.

“PWP often feel that they are weak, most particularly in the legs. In a study we performed, 40% of PD patients thought that their legs were weak. Sometimes they felt that their legs were “heavy,” “encased in concrete,” “made out of lead,”, “dead, “ “wooden,” etc. Yet the legs were not weak. The brain perceives the reduced motor control as being weakness, even though the problem is really reduced control.”

…...as mentioned in the Laugh post.

“I have never heard a PWP report that they move less than other people. In fact, PD patients are almost always “akinetic” to some degree. This means that they have fewer spontaneous movements than other people, which is readily seen in the blink rate. PWP blink less than normal people, contributing to their facial “staring” expression. They also swallow less than others, which is why saliva pools in their mouths, leading to drooling. Thus, PWP do not realize that their immobility is a difference between them and others.”

……..and also in the Laugh Post

‘In addition to PWP misperceiving themselves they are also not perceived properly by others. This has not been properly studied but the few papers published on this topic indicate that people, including health professionals, have a more negative impression of PWP they haven’t met based purely on their facial expression, viewing them as depressed, angry, less socially involved, less interested and less pleasant based on how “masked” their facial expression is. These impressions were completely unrelated to what the PWP actually was like. This unfortunate problem may underlie difficulties PWP experience relating to people who don’t know them.”

…….the link to the original post is below:

There are a number of other misperceptions that seem to be more common in PWP than in the general population, and understanding that we all perceive the world differently, and that these differences reflect not only our genetic makeup and our specific experiences in life, but also the changes that take place within our brains as a result of aging or disease processes.




People frequently say to me…”Smile… Things can’t be that bad.” I can be laughing on the inside, but it is like I forgot to tell my face. It makes me wonder how long I was experiencing symptoms prior to the official diagnosis, When I met with the movement specialist, she told me I had a clasic Parkinson’s mask.

The following paragraphs are excerpts from tomorrow’s post on Perception,

“In addition to PWP (person with parkinson’s) misperceiving themselves they are also not perceived properly by others. This has not been properly studied but the few papers published on this topic indicate that people, including health professionals, have a more negative impression of PWP they haven’t met based purely on their facial expression, viewing them as depressed, angry, less socially involved, less interested and less pleasant based on how “masked” their facial expression is. These impressions were completely unrelated to what the PWP actually was like. This unfortunate problem may underlie difficulties PWP experience relating to people who don’t know them. “

“…………This means that they have fewer spontaneous movements than other people, which is readily seen in the blink rate. PWP blink less than normal people, contributing to their facial “staring” expression. They also swallow less than others, which is why saliva pools in their mouths, leading to drooling. “

Describes me exactly. I’m pretty sure my body produces extra saliva… I feel like a drooling machine.


April 11, World Parkinson’s Day

Today is World Parkinson’s day and it’s an opportunity to raise awareness for Parkinson’s disease.


I copied these thoughts which follow… from various other blogs.. sorry I forgot to write down who to credit. 😦

“Parkinson’s Awareness Month and I have questions. Who is it we are trying to make aware? What is the goal of this Awareness Month? Is it to make others aware of the disease, accept the disease or to better understand the disease? However I believe that, being aware , accepting and understanding are all totally different things! Too often you may have experienced Parkies that are aware of and have accepted the disease, without understanding what the disease brings to them. Those of us with Parkinson’s could do a lot better at becoming more aware of how we accept and understand the disease. You may have met fellow Parkies that have given into what the disease may bring before those limitations are even presented to them. They are certainly aware of the disease, they have accepted the disease but their understanding of it has let the disease take a part of their life from them before it had to happen. Does our own awareness of Parkinson’s grow as the disease progresses? If so our acceptance and our understanding must grow as well. So to me Parkinson Awareness Month is for; 1:Those who don’t have it 2;Those caregivers that care for us. 3:Those of us that have the disease. Put them in any order you want !”

But before I discuss those, I want you to think about this: “researchers say that by the time a person with Parkinson’s disease starts experiencing motor symptoms, they have lost between 60% – 80% of their dopamine producing neurons! “

“So, let’s talk about Parkinson’s disease (PD)… actually, I should be more specific – let’s talk about dopamine. To those who are not familiar with PD, dopamine is said to be the neurotransmitter that is deficient in PD patients. This brain chemical is responsible for many important human functions.”

What that means is that, in my case, as of summer 0f 2014 (my first recollection of weakness in my legs), I had lost way more than half of my dopamine producing neurons. This was over 5 years ago.

“Let’s go back to dopamine’s role in human functions – it plays a role in movement, memory, cognition, mood, attention, and behavior. Now, I know the relationship is not precisely linear, but if a person with Parkinson’s disease (PWP) has lost the majority of their dopamine producing neurons – neurons that produce the brain chemicals responsible for the aforementioned functions, I think it stands to reason that even if they gave a 100% effort all the time in these areas, they would still come up short. This is not a justification for bad behavior nor is it an excuse for a PWP not giving their best effort. This is simply raising awareness about the difficult limitations PWP are confronted with. If we, PWPs, are only operating with a small fraction of this all-powerful neurotransmitter then our mood, our cognitive abilities, our behavior, our drive, our attention to details, our addictions, and many more “ours” are all bound to be impacted, right? When it comes to our abilities to perform all these functions, rest assured that the playing field is not level – not even by a long shot. Think about that.– “