I may participate

I had a phone interview this morning. I passed the pre-qualifications and have an appointment tomorrow morning, at the clinic site in DeLand, to learn if I am accepted to participate in a study.

The study intrigues me, because …as I posted before, I have been taking an enzyme I found referenced to as beneficial in breaking down the build up of alpha-synuclein.

………………………….Serropeptase & Parkinson’s
12/29/18 Dr. Berg recommended … Serropeptase  3 x’s a day on empty stomach  suggesting enzyme may break down or dissolve build-up of protein (alpha synuclein) in the brain.

I found this additional insight on ‘MyParkinsonTeam.com’: “Now known as Lewy bodies, these deposits of alpha-synuclein (aS) protein are understood to be one of the most common causes of dementia in people with parkinsonism.”

…………….I expect they will require that I discontinue taking the enzyme, for the duration of the trial… but that is ok.

STUDY PURPOSE: The most urgent unmet medical need in Parkinson’s disease is a treatment targeting the underlying disease mechanism and thus prevent the disease from progressing rather than only controlling symptoms. The study drug tested in this study is a new chemical compound called UCB0599, which could have such effects by preventing the aggregation of alpha-synuclein in the brain, which is thought to be the main driver of the disease progression. This is strongly supported by studies in animals but it is still unknown if UCB0599 will provide real benefit to humans. The purpose of this study is to evaluate the safety, tolerability and pharmacokinetics of multiple doses of UCB0599. Pharmacokinetics means measuring the amount of the study drug in the blood and how long it stays in the body. For this purpose, Study Participants will be randomly (by chance) assigned to receive either the study drug or a placebo, both provides as capsules. A placebo is a “dummy” capsule without UCB0599. Participation in this research will require participants to stay in a clinic or trial unit for 30 days (28 days of treatment and 2 days for safety follow-up). The study drug differs from purely symptomatic drugs currently available and may improve the medical care of patients who do not respond to, or cannot tolerate current drug treatments for Parkinson’s disease. The drug also has the potential to have a positive effect on a much broader range of symptoms of PD, including non-motor ones (like cognitive issues). The study is expected to provide critical safety and PK data required for a larger study to test if the drug works in PD patients.”

I will send updates to confirm if I am accepted.

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

Quietly Optimistic

I found this just tonight!! I have included the url to the whole report, of an Australian trial which gives new hope for Parkinson’s disease treatment… but cut and pasted sections for your convenience.

https://thenewdaily.com.au/life/wellbeing/2019/06/11/parkinsons-disease-treatment-trial/

“There’s quiet but confident hope for a breakthrough treatment for Parkinson’s disease, following a successful drug trial in Australia.”

“It ticked two boxes when it comes to treating the debilitating degenerative disease: Improved patient symptoms and it stopped the progression of Parkinson’s.”

………………………………..

The path to the phase-one trial results being released this week began about 15 years ago, Florey Institute head of neurotherapeutics Kevin Barnham said.

But even in those early days, Professor Barnham said, those involved were quietly optimistic. The positive results from the MND and Parkinson’s treatment trials have strengthened that optimism.

“So while it is still too early to claim definitive success, we’re doing the hard yards to discover exactly how the compound saves brain cells, and hope to report on this before the end of the year,” Professor Barnham said in a release on Tuesday.

………………………………………..

Nineteen Australian Parkinson’s patients were recruited for the trial, and 18 were administered the drug, in three different volumes: Small, medium and large.

……………………………………..

“I was playing it down to patients at the start, saying, ‘This probably won’t make you feel better’. But people were coming back saying, ‘I feel better on this drug’.”

………………..

In Parkinson’s disease, some neurones are dead, and some are sick, while some remain functioning.

“What the drug has done is bring back those sick neurones into functioning well,” he said.

How to fall… with style

Yes you really need to learn to fall. I learned to fall 51 years ago when i fell head over heels and have been falling ever since. Lol.  Happy Anniversary to my sweetheart.

………………………… saw this post in another conversation…..

“I fell last night. I dropped like a sack of potatoes. 
My arm was bleeding and my left leg was throbbing. 
All I could think about was how I would feel in the next morning. 
Well, I awoke with minimal pain and a stiff leg. 
It could have been worse if I didn’t remember how to fall. 
My PT coach taught me how to fall. It’s a split second decision. 
If there is something to grab on to you’re lucky. If not, try to fall on your side. 
It’s safer than falling face first or on your back where your head hits the floor. 
Now, I didn’t say it wouldn’t hurt but it does avert serious injuries 
Today I hurt but I’m walking. “

Prodromal .. a new word to me

A ‘new to me’ team member of myparkinsonsteam used the word predromal as she asked about my symptoms. So naturally, I did a search… and found this blog post… about a superpower.

“Parkinson’s Disease is a thief. It is insidious. It is sneaky. It is destructive. It sneaks up unsuspected and does it’s best to diminish one’s quality-of-life, self-esteem, and ability to be self-reliant.”

“To understand how this happens, let’s introduce the word “prodromal.” It refers to symptoms of a disease that appear before a diagnosis. For example, a slight sniffle may herald a full-blown cold—or not. PD has many prodromal issues. The most common early symptom, occurring up to ten years before tremors appear, is loss of sense of smell. Because so many other possible causes exist, it is not a reliable diagnostic measure.”

“PD steals our ability to differentiate foods, the ability to snuggle up and appreciate our wife’s new perfume and even the ability to smell spoiled foods. It is both a quality of life issue as well as a potential health threat. For example, I can no longer tell the difference between cola and root beer. Except for texture, broccoli and cauliflower taste the same. Almonds, cashews and peanuts are just nuts with different shapes—not different tastes. I carefully check dates on dairy products so as not to drink soured milk.”

“Another common non-motor symptom is a “masked face.” Also called a “flat affect,” loss of fine motor control may make it seem the PWP (person with Parkinson’s) is angry, disinterested or unhappy even though the PWP thinks they are smiling or expressing joy. This masking easily leads to miscommunication and misunderstanding. My four-year-old grandson asked me why I was mad while we were building with Lego’s. Have you ever tried to explain facial masking to a four-year-old? PD steals again.”

“The essence of PD is the loss of brain cells that produce dopamine—essential for voluntary muscle movement and involved in the pleasure mechanism of the brain. Another way PD steals from us is depression and apathy. Although clinically different, both symptoms lead to a lessening of joy and appreciation of life, family and relationships. Social isolation is all too common for PWP’s and often becomes a downward spiral. Being unable to appreciate the simple joys of life, not wanting to share thoughts and feelings with others or wanting to be left alone all the time is not an ideal existence. PD is, once again, a thief.”

“Once motor symptoms are manifest, it is apparent that PD often steals from us our balance, our ability to prevent falls, free and easy movements and leaves us with stiffness and pain.”

“The good news is that Superheroes do exist! Parkinson’s Warriors fight the thief every day. Here is the story of one of them—we’ll call him Bob.”

“Bob was in his late 60’s and his PD had advanced quite rapidly. He was the poster child for what many folks think of when they think of PD—stooped posture, tremors, balance issues, and a shuffling, painfully slow gait, assisted by a walker. With determination, every morning, Bob would hobble to the kitchen, get a bowl from the cupboard, a spoon from the drawer, cereal from the pantry and milk from the refrigerator. All this took about fifteen minutes. Sitting down, pouring the cereal and milk took another five minutes and usually involved spilled milk. Eating was a laborious process as well. Bob’s goal was to complete breakfast in under an hour. Most days, he won… he beat the thief known as PD that was trying to take away his dignity and self-control. That was Bob’s superpower. At least once a day, he was in control. He was able to temporarily lock up the thief known as Parkinson’s Disease. Think about that…  having a bowl of cereal as a superpower!”

“That’s how I choose to remember Bob, my dad.”

A.C. Woolnough
NWPF Blogger

Orthostatic tremor

I learned about a type of tremor I hadn’t heard about, before… from a team member with a MSA diagnosis, typing on the myparkinsonsteam.com site.

“Orthostatic tremor (OT) is a rare syndrome characterized by unsteadiness on standing due to a high-frequency tremor involving the legs. Symptoms usually start in the sixth decade. Typically, the symptoms rapidly improve on sitting or walking, and the need to sit down or to move can be so strong that patients avoid situations where they have to stand still. A polygraphic recording of a fast and synchronous tremor of the legs, between 13 and 18Hz, is mandatory to confirm the diagnosis of OT. Many patients also suffer from tremor, often involving lower frequencies, of the face, hands, or trunk. Recent studies suggest that this is perhaps due to subharmonics of the high-frequency tremor spreading through the body. Most cases of OT seem to be idiopathic, though symptomatic forms have been occasionally described. Several cases of OT have been reported in Parkinson’s disease.”

…..What follows was written by a DR in the Neurology Dept at Mayo Clinic…..

“The term tremor implies an involuntary, rhythmic body movement. Orthostatic tremor affects the muscles in a person’s legs, and sometimes also radiates from the legs upward to other parts of the body. The term “orthostatic” refers to standing. Orthostatic tremor occurs when a person stands up. The condition can be difficult to diagnose and, although medication helps some people, it can be a challenging condition to treat effectively.

Orthostatic tremor is an uncommon disorder that can significantly affect the quality of life for those who develop it. Usually, the main symptom is a feeling of leg shakiness and unsteadiness when standing still. Orthostatic tremor can create difficulty in performing daily activities that require a person to stand freely without support. For example, standing in line at a store, standing at a kitchen counter to prepare a meal, or standing at a workbench to enjoy a hobby can be very hard or impossible for people who have orthostatic tremor. Most people don’t fall as a result of the condition. However, approximately 15 percent become so unsteady that falling is a problem.

Orthostatic tremor often starts shortly after standing and stops when a person sits or lies down. Contrary to what common sense might normally suggest, typically the tremor decreases when a person is walking. Leaning on an object such as a chair or a countertop when standing also may help reduce the tremor.

Orthostatic tremor is a high-frequency tremor, which means the tremor rhythm is very rapid and there can be as many as 16 to 20 tremor cycles in one second. That’s significantly faster than other tremor types. For example, essential tremor usually involves eight to 12 tremor cycles per second, and the tremors associated with Parkinson’s disease typically occur at a rate of four to eight cycles per second.

Because the tremor is so fast, orthostatic tremor can be difficult to see. That can make the diagnosis challenging. In some cases, when patients report that they feel unsteady on their feet, the physicians may overlook the leg tremor and may pursue other possible causes of unsteadiness. One additional diagnostic strategy is to place a hand on the thigh, feeling for the tremor; however, the clinician must have an appropriate level of suspicion.

If a physician suspects orthostatic tremor, the diagnosis can be confirmed by assessing the electrical activity in the leg muscles. At Mayo Clinic, that analysis is conducted in our Movement Disorders Neurophysiology Laboratory. During orthostatic tremor, the leg muscles show no electrical activity when a person is sitting. When he or she stands up, though, the muscles immediately begin firing rhythmic bursts of electrical activity.

Because the cause of orthostatic tremor is unknown, a cure currently isn’t available. Instead, treatment focuses on the symptoms. Once the condition is diagnosed, the first line of treatment is the medication clonazepam or a related drug. This medication moderately to markedly reduces orthostatic tremor in about one-third of people who have the disorder. For some, it eliminates orthostatic tremor almost entirely.

Unfortunately, for those who don’t respond to clonazepam, no single alternative medication has a high likelihood of decreasing orthostatic tremor. Although numerous other medications may be tried, these may be no more than mildly helpful.

Fortunately, orthostatic tremor tends not to be a progressive disorder. Once the symptoms are fully developed, it doesn’t progress to a more pervasive neurological condition. It does tend to be persistent, however, and usually does not resolve on its own.”

— J. Eric Ahlskog, M.D., Ph.D., Neurology, Mayo Clinic, Rochester, Minn.