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The Journey Has Begun…

 I can’t say with any certainty when it began. 

     As a member of the Church of Jesus Christ of Latter Day Saints, firm in the faith, I understood none of us are exempt from trials that will test us.  But I also knew many of our trials are a consequence of prior bad choices.  Because I was born with a strong healthy constitution and had a health conscious life style, complete with nutritional supplements, herbs & essential oils I felt like a candidate for one who could live to witness the second coming of Christ.

     John & I raised ten children of our own, and as circumstances permitted we were professional parents to numerous special needs young people, then for nearly 16 years we operated a licensed Family Group child care in our home.  We lived on an acre of land and had an amazing garden and all sorts of fruit trees and berries.  I felt like my life style afforded me all the exercise I needed.

In the spring of 2015, I noticed it was difficult to move around in the cherry tree while picking.  But when I climbed into the apple tree to string lights for our youngest daughter’s wedding in June of 2015… I knew my days of tree climbing were over.

      After moving to Lady Lake, I transitioned to a holistic Dr. stating I had lots of abnormal symptoms. None, by themselves were serious, but I wondered if together they might be indicative of a bigger problem? April 30th 2018, by process of elimination and observation, Dr.Kraucak determined my diagnosis to be Parkinson’s Disease. For me, having a name meant I no longer needed to wonder why I had such a soft voice and drooling, why my hands were so weak, while playing family games, I couldn’t hold cards to shuffle and my handwriting was so small and unintelligible. A name meant I now understood why I felt like my feet struggled to keep up with my head and I couldn’t balance enough to participate in a water exercise class, etc..

  It has taken NINE months since I received the name to target my research efforts… but now I am ready to begin to blog.

Welcome 

I am DELIGHTED to have you here. If you haven’t done so already, please browse the website to learn more.  I will try to make it easy for you, by linking my blog entries to the INDEX page,to facilitate your search for specific topics.  

Don’t forget to click on FOLLOW so you stay up to date on additional new content!

      I have already learned so much on this journey with Parkinson’s disease. I saw a blog called Parkinstand hosted by a lovely African lady seeking to locate other people of African ethnicity.  I was prompted to create a forum where people of my faith could share their experiences to strengthen one another.

I can’t wait to share all that, and more, with you!

Stay tuned.

 

A new word: Festination

Yesterday, I went to the neurologist. He indicated the DatScan report was conclusive, that I had a significant loss of dopamine. He speculated I have been loosing it for at least the last 4 or 5 years. Because of my previous intolerance for the medication, he plans a gradual increase… increasing the dosing to four tablets a day. Then after four weeks starting two tablets at one of the doses. I was pleased to report some lessening of symptoms… he seems to think I will see a lot more improvement.

In reading through his notes, I saw a word I wasn’t familiar with. I learned a new word last night… then I experienced its effects in the wee hours of the morning.

“What is Festination in Parkinson’s?  Parkinsonian gait (or festinating gait, from Latin festinare [to hurry]) is the type of gait exhibited by patients suffering from Parkinson’s disease (PD). This disorder is caused by a deficiency of dopamine in the basal ganglia circuit leading to motor deficits.”

Allow me to set the stage: Due to my Parkinson’s stiffness, I have discovered it is much easier to make a graceful landing on the porcelain throne with a ‘raised’ toilet seat :

Raised Toilet Seat

A couple more challenges to cope with is a sense of urgency which hits me as soon as I sit up in the night and a slowness to initiate movement. First I move to the foot of the bed until my hand find the round bed knob where I pivot, baby stepping between the foot of the bed and our WBV machine until I turn right and have a clean shot into the bathroom. As I clear the bathroom door frame, the urgency has intensified, so I raise my hands to tuck my thumbs into the waistband in anticipation of a speedy lowering… then the festination kicks in! I find myself rushing forward, unable to slow myself or free my thumbs!!

Propelled forward, while striving to turn my anatomy and simultaneously pushing clothing aside, I was spared a fall, as I landed with my head on the toilet paper on its portable magazine rack stand which was supported by the elevated bathtub side…sort of seated on my target.

After discussing my close call, with my sweetheart, he has come up with a plan to rearrange our bedroom, providing me with a much shorter, straighter pathway. I dearly love this man, and appreciate his tender affection and attention to details.



Types (Atypical Parkinsonisms)

Continued from article: (Posted on August 13, 2018 by MyParkinsonsTeam)

Some types of parkinsonian movement disorders have similar motor symptoms as Parkinson’s disease and are also caused by progressive damage to the brain, but do not improve when treated with medications that are effective in Parkinson’s disease. These conditions are known as atypical parkinsonisms or “Parkinson’s plus.” Atypical parkinsonisms may show slight differences in motor symptoms from Parkinson’s disease. For instance, motor symptoms may start on both sides of the body instead of one side, or problems with thinking, memory, and mood may occur first, before motor symptoms.

Multiple system atrophy (MSA)

MSA is a rare condition with about 1,900 new cases diagnosed each year in the U.S. MSA is also known as Shy-Drager syndrome (SDS). MSA seems to affect men and women at equal rates. MSA has motor features in common with other types of Parkinson’s but is more likely to present with symptoms related to the autonomic nervous system. The autonomic nervous system regulates blood pressure, digestion, and temperature, and people with MSA are more likely than those with Parkinson’s disease to experience bladder or bowel problems, excess sweating, and orthostatic hypotension (fainting or dizziness after standing).

In MSA, an abnormal protein called alpha synuclein builds up in regions of the brain including the basal ganglia, the cerebellum, and the brain stem. Alpha synuclein buildup also occurs in Parkinson’s disease, but is usually seen later in the course of the condition, and mostly confined to the substantia nigra region of the brain. MSA affects different types of brain cells than those affected by Parkinson’s.

There are two subtypes of MSA:

MSA-P
MSA-P more closely resembles Parkinson’s, but it progresses more quickly and stops responding to Parkinson’s drugs sooner.

MSA-C
In MSA-C, progressive loss of coordination and balance are prominent. People with MSA-C may show an “action tremor,” or tremor that happens when they reach for an object. Muscle weakness can cause slurring and trouble swallowing. MSA-C can develop as early as a person’s 40s.

Progressive supranuclear palsy (PSP)

Also known as Steele–Richardson–Olszewski syndrome, PSP causes motor symptoms very similar to those seen in Parkinson’s, but they tend to be much more severe and progress much more quickly. Most people develop severe disabilities within three to five years of a PSP diagnosis.

In addition to motor symptoms, people with PSP are likely to have mood and personality changes and cognitive difficulties. Tremors are rare in PSP. In progressive supranuclear palsy, people are more likely to tilt and fall backward, while people with Parkinson’s lean and fall forward.

PSP is also considered a type of frontotemporal dementia (FTD), a collection of conditions that cause progressive damage to the frontal and temporal lobes of the brain. In healthy brains, there is a normal protein called tau that helps form the structure of cells. In PSP, tau protein tangles together in abnormal clumps, and brain cells are destabilized.

Unlike other forms of parkinsonism, PSP can significantly reduce life expectancy. With treatment, a person with PSP may live 10 years after diagnosis.

Dementia with Lewy bodies (DLB)

DLB is characterized by the early development of cognitive symptoms (related to memory, attention, and thinking) and psychotic symptoms such as hallucinations. Parkinsonian motor symptoms occur later in the progression of the disease. After Alzheimer’s, DLB is the leading cause of dementia. DLB typically does not occur before the age of 65. In DLB, alpha synuclein protein builds up throughout the cerebral cortex of the brain, forming collections called Lewy bodies.

DLB is often misdiagnosed as Alzheimer’s. Symptoms of DLB may respond to medications for Parkinson’s or Alzheimer’s, but certain Alzheimer’s medications carry high risk for dangerous side effects if given to those with DLB. DLB and Parkinson’s disease dementia have many features in common, and together they are known as the Lewy body dementias.

Corticobasal degeneration (CBD)

CBD, also called corticobasal syndrome, is a rare type of parkinsonism that usually progresses more quickly than Parkinson’s disease. In CBD, brain cells in the cerebral cortex and the basal ganglia shrink and die. CBD affects men and women approximately equally. Symptoms usually begin between the ages of 50 and 70. Corticobasal degeneration may be considered a type of frontotemporal dementia (FTD).

Motor symptoms in CBD are nearly always asymmetrical – occurring on one side of the body. CBD may also cause cognitive and behavioral symptoms. People with CBD may also have Parkinson’s disease, dementia with Lewy bodies, progressive supranuclear palsy, frontotemporal dementia, and Alzheimer’s-like dementia

Types (Secondary Parkinsonisms)

Continued from article: (Posted on August 13, 2018 by MyParkinsonsTeam)

In some cases, Parkinson’s symptoms are not a disease in themselves, but are caused by certain medications or by other conditions. These types of parkinsonism are referred to as secondary parkinsonism. Unlike Parkinson’s disease, secondary parkinsonisms are usually not progressive and do not respond to the same drugs. Secondary parkinsonisms include drug-induced and vascular parkinsonism.

Drug-induced parkinsonism

Certain medications can cause parkinsonian symptoms as a side effect. Drug-induced parkinsonism is the second-leading cause of parkinsonism after Parkinson’s disease.

Drug-induced parkinsonism may be caused by a range of medications, including:

  • Antipsychotics such as Haldol (Haloperidol) and Thorazine (Chlorpromazine)
  • Anti-nausea medications such as Reglan (Metoclopramide)
  • Antidepressants in the serotonin specific reuptake inhibitors (SSRI) class such as Prozac (Fluoxetine) and Zoloft (Sertraline)
  • Calcium channel blockers such as Flunarizine and Cinnarizine (not approved for use in the U.S.)
  • Reserpine
  • Xenazine (Tetrabenazine)

These drugs do not cause parkinsonism in every person who takes them.

The symptoms of drug-induced Parkinson’s are usually temporary. Symptoms typically fade and disappear within a year of stopping the medication that caused the condition, sometimes within weeks. In some cases, the symptoms of drug-induced parkinsonism are permanent, but they are usually not progressive like other forms of parkinsonism.

Vascular parkinsonism

Vascular parkinsonism is caused by small strokes in the brain where blood vessels have become blocked. Also known as arteriosclerotic or multi-infarct parkinsonism, vascular parkinsonism is usually limited to the legs. Unlike other forms of parkinsonism, vascular parkinsonism appears suddenly rather than gradually and is not usually progressive. Hypertension (high blood pressure), high blood cholesterol, diabetes, and heart disease can contribute to the development of vascular parkinsonism. Unlike most other types of Parkinson’s, vascular parkinsonism can often be seen in computerized tomography (CT) or magnetic resonance imaging (MRI) scans of the brain.

Typical Parkinson’s medications do not improve symptoms of vascular parkinsonism. Treatments are aimed at preventing additional strokes and may include Aspirin or blood thinners and recommendations to stop smoking, eat a diet low in salt and saturated fat, and get more exercise.

Types (Parkinsonism Syndrome)

Lowrey… stated about this article: ( Posted on August 13, 2018 by MyParkinsonsTeam) Volumes of objective, clear and succinct info about PD, with out the border line hysteria often associated with cognitive impairment. Most refreshing! Many thanks for sharing this.

I agree! But, knowing my readers, I have broken the article into three days, to hopefully avoid overload and ‘shut down’ without reading… day 2 will be “Secondary ParkinsonismDay 3 outlines five “Atypical Parkinsonisms.”

Parkinsonism is a syndrome, or collection of symptoms, characterized by motor issues – bradykinesia (slowed movements), tremors, loss of balance, and stiffness. There are many types of parkinsonism classified by their cause and how they progress. Knowing which type of Parkinson’s someone has helps neurologists prescribe effective treatments and better predict how the disease will progress.

Parkinson’s types

There is no conclusive test to identify what type of parkinsonism someone has. For some people, years may elapse between experiencing the first symptoms and receiving a definitive diagnosis of a specific type. Since all parkinsonisms share similar motor symptoms, Parkinson’s diagnosis can be very difficult. A correct diagnosis is more likely when performed by an experienced neurologist who specializes in movement disorders. Some people have multiple chronic conditions, making it difficult for doctors to identify whether parkinsonian symptoms are caused by a disease or a medication. In some cases, it is possible to have more than one type of parkinsonism.

Parkinson’s disease

The most common type of parkinsonism is Parkinson’s disease (PD), which accounts for about 80 percent of cases. No one is sure what causes most cases of Parkinson’s disease, so it is also known as idiopathic Parkinson’s. Idiopathic means “cause unknown.”

Deep inside the brain, regions called the basal ganglia and substantia nigra work together to ensure that the body moves smoothly. The substantia nigra produces a neurotransmitter – a chemical that helps nerves communicate – called dopamine. Messages sent by the brain to muscles to cause movement pass through the basal ganglia with the help of dopamine. In Parkinson’s disease, cells in the substantia nigra gradually stop producing dopamine and die off. With too little dopamine, the basal ganglia cannot facilitate movement as well. Researchers believe parkinsonian symptoms begin when the level of dopamine falls to about half of normal levels.

Subsets of Parkinson’s disease include:

  • Late-onset Parkinson’s disease

Symptoms develop after age 50.

Most PD is late-onset.

  • Early-onset or young-onset Parkinson’s disease

Symptoms develop before age 50.

Accounts for approximately 10 percent of PD cases

Tends to have slower progression, more medication side effects

Dystonia (painful spasms and abnormal postures) is more common in early-onset PD.

  • Juvenile-onset Parkinson’s disease

Symptoms develop before age 20.

Extremely rare

Often strong family history of Parkinson’s

  • Familial Parkinson’s

Directly caused by genetic variants inherited from parents

Accounts for 10 to 15 percent of Parkinson’s disease cases

Parkinson’s disease dementia (PDD)

Between 50 and 80 percent of those with Parkinson’s disease eventually develop Parkinson’s disease dementia. On average, most people begin to develop PDD about 10 years after they receive a Parkinson’s disease diagnosis. PDD is often confused with Alzheimer’s and dementia with Lewy bodies. Parkinson’s disease dementia is usually diagnosed when motor symptoms occur first, at least a year before dementia symptoms.

Antipsychotics such as Haldol (Haloperidol) and Thorazine (Chlorpromazine)

Anti-nausea medications such as Reglan (Metoclopramide)

Antidepressants in the serotonin specific reuptake inhibitors (SSRI) class such as Prozac (Fluoxetine) and Zoloft (Sertraline)

Calcium channel blockers such as Flunarizine and Cinnarizine (not approved for use in the U.S.)

Reserpine

Egg on my face

I recall the time I went into the Stake President’s office for an interview. As I exited the office, my sweetheart was waiting… and tenderly reached his hand to the corner of my mouth as he said, “Did you know you had egg on your face?”

Really? He couldn’t notice and tell me earlier??!!

Similarly, I’m sure y’all can relate. You go to a parent teacher conference, and there is platter of chocolate sandwich cookies. It always happened to me…. cookie not quite gone, and suddenly the teacher is ready to talk to me… And I’d try to not smile, for fear the chocolate clinging to my teeth would gross the teacher out.

As my drooling has gotten worse, along with a loss of feeling in my face; my grandchildren have begun to gently let me know when my face has extra adornment.

Fb img 1568851131058

I have been known to say, “I’ll be able to tell if something is helping, if it controls the drooling.” I am VERY PLEASED to report, since the neurologist convinced me to try the prescription Sinemet again, there have been periods of two to three hours at a time, when I haven’t felt a need to wipe at the corners of my mouth!

I know, I will continue to need reminders to clean chocolate from my face, but I’ll be grateful for each small victory, and feel gratitude for the understanding of family and friends.

Ease of Mobility

OKAY… this device looks so cool, I had to show it to you. IF my balance deteriorates to the point I need a walker, THIS is my choice. Everything below was cut & pasted from the company’s website… Wishing I could get paid for referring you. 🙂

” The LifeGlider is intended to be used by people who struggle to walk securely and confidently, and to allow mobility without extreme fatigue or fear of falling. By securing the body’s center of gravity, the LifeGlider encourages upright posture, helps restore proper gait, and reinforces a sense of balance and confidence. Unlike a traditional walker, it can be used hands free.”

https://www.mylifeglider.com/use-cases/#parkinsons-disease

The LifeGlider™ is a new mobility device that permits upright, hands-free mobility.

“At Core Mobility Solutions, our sincere hope is that you too will enjoy the benefits that others have found in using the LifeGlider, including restored dignity associated with standing upright, greater participation in the activities of daily living and numerous health benefits associated with moderate movement and exercise.”

THE KEY TO STABILITY: SECURING THE CENTER OF GRAVITY
“The patented LifeGlider represents an evolution in assistive mobility devices, and is unique in that it secures the user’s center of gravity. This enables upright posture and encourages proper gait, balance and greater confidence as the fear of falling disappears. Securing the body’s center also frees the hands, since gripping the device is not necessary. (No need to hold the device – the device holds you.) The arms can swing naturally, contributing to proper gait, or the hands can be used for other tasks.”

“By contrast, a traditional walker typically encourages an unnatural forward-leaning posture and a slight downward gaze; It directs upper body weight onto the shoulders, arms and hands, which can be tiring, and requires holding the hand grips to move forward – in general, just managing a traditional walker requires effort and attention. A traditional walker also presents a barrier between the user and others, whereas the LifeGlider frame is behind the user, enabling more natural and personal social contact. Most important, traditional walkers and other common commercial devices do not prevent falls.”

Enabling Upright, Hands-Free Mobility

BUILT-IN SEAT: FOR FULL OR PARTIAL WEIGHT ALLEVIATION

“The LifeGlider’s built-in seat is positioned at the tailbone and may be used to alleviate all, some, or no weight, as needed. When walking, the seat provides extra security and stability, enabling even individuals with limited leg strength to enjoy mobility and carry out daily activities.”

“Whereas traditional walkers with bench type seats allow only two positions (fully sitting or fully standing), the LifeGlider also enables a third option – partial weight support. This is useful in rehabilitation settings, as part of an exercise or strengthening routine, or simply to provide a bit of rest when needed.”

POTENTIAL BENEFITS OF BEING UPRIGHT, HANDS-FREE, AND MOBILE

  • “Reduced anxiety from fear of falling and greater confidence when upright
  • Reduced cognitive load associated with constantly monitoring risks and obstacles to safe movement
  • Ease of daily activities
  • Improved ability to interact socially
  • Eye level contact with others
  • Increased ability to exercise safely
  • Increased muscle and bone strength
  • Improved digestion and circulation
  • Maintenance of good posture, balance
  • Ability to move using proper gait
  • Reduced stress associated with constant device management
  • Ability to walk indoors or outdoors
  • Ability to relax arms while walking
  • Ability to use hands while walking”