October 2019 – Standing up to Parkinson's

I figured out what I want to give.

For my grandchildren, I am going to type 24 stories from our experiences. This task will consume much of my time during the next month…or more. So, I may not post to my blog as frequently as I have in the past. So I am giving you, my dear readers an assignment: Start being kinder to yourself, following these four suggestions: Season’s Greetings

‘Being kind to yourself is one of the best things you can do for yourself. But it’s also the one thing that is most often neglected or something that some people may feel guilty about doing.”

1. Speak To Yourself As You Would To Your Friends

“Before you speak, think it over: if you wouldn’t say it to any of your closest friends, don’t say it to yourself.”

“What you can do the next time you find wallowing in negative self-talk is to get a pen and paper, and draw a box with two rows and five columns. Label them: Thought, Emotion, Evidence, New Thought, and New Emotion.“

“Break down your negative thoughts into each of the first three columns and formulate positive thoughts out of them. Repeat this exercise every day until you form the habit of stopping negative thinking in its tracks and replacing them with kinder ones.”

2. Exercise Mindfulness

“It’s not only negative self-talk that harms your inner being. Self-judgement also hurts your self-worth, even if you aren’t consciously doing it. You will become what you believe you are.”

“Mindfulness exercises help you defeat these thoughts of self-judgment and ideas of defeat and replace them with self-compassion.
Consider your thoughts and emotions without ruling them out as “good” or “bad”. Examine them with mindful awareness without judging it – don’t try to dismiss them, but don’t dwell on them either.”

“Feelings and thoughts come and go, and they change. Do not build your identity on these fleeting things. This too shall pass.”

3. Forgive Yourself

“You did the best you could with the cards you were dealt. The lessons you picked up from your mentors, your environment, your experiences, and your physical and mental health all influence the way you treat others and yourself.”

“Self-forgiveness isn’t making excuses or pretending you didn’t make a mistake. It means showing yourself compassion and recognizing that you’re only human. People all make mistakes, sometimes tragically huge ones. But the more important thing is making amends and avoiding the same mistakes in the future.”

4. Stop Comparing Yourself To Others

“You may think you know someone from what you see on Facebook, but in reality, you really don’t know the whole story. People tend to use social media to show the idealized versions of their lives. Behind a perfectly manicured lawn are nightly fights between your old coworker and her husband. Behind extravagant trips around the world are piling credit card debts.”

“Don’t go down the rabbit hole of social media. Stop comparing yourself with other people. What you can do is un-follow people whose lives trigger strong negative emotions with you. You’re being kinder to yourself by removing these unrealistic benchmarks and redirect your focus on becoming a better person.”

From: Lisa Chan… written July 17, 2019

Gift suggestions please

During the years John and I were ‘professional parents’ we had sixteen special people who, at various times, became one of our family members. We, and our children, have many fond memories which frequently come back to our remembrance. For instance… the first thing Debbie said, to anyone she met, every day of the year, and with great anticipation was… “Birthday’s coming up!!… May 25th!!”

Yesterday was Oct. 25th! And I realized it is just two months till another gift giving occasion arrives. On Christmas, Christians commemorate the gift of God’s Son, by the tradition of giving gifts to those we love. We all love to give gifts, and although some may say they don’t want to receive… I believe, on some level, everyone has a need to receive a gift. It doesn’t need to be wrapped in a package with a pretty bow, to be appreciated. It doesn’t even need to cost a lot to be appreciated… For example, a grandson wrote a poem, in tribute to his grandfather, and framed it as a gift for Father’s Day. It was heartfelt, touching and brought tears to our eyes. (Happy tears)

Still… I’m running short on ideas… With over 30 ‘big people’ and over 24 younger people that I’d like to gift to… Perhaps I can recall some stories from the past that I can share with them? PERHAPS you will have a suggestion you’d like to share with me?

Me … yesterday

We don’t deal the cards we can just play the hand we’re given.

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 :

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 Parkinsonism” Day 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.

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.