Month: February 2021

Conversation on ideation

Please read this discussion and offer your own thoughts. @mckchart said :

I asked the same question (why me ) but get one thing straight it’s not a death sentence so be very positive and make sure you don’t let it get you down ,many a famous person has thrown in the towel and done the unthinkable ,just make sure you have someone to talk to when things get on top of you …….Parkinson’s educator ( feel free to contact me )

……………………………… Here is @pdpatient’s response :

@mckchart, the “unthinkable” was excellently phrased by you and I couldn’t have said it better. However, you have inadvertently opened the proverbial pandoras box for some PwP’s such as me.

I was formally diagnosed in the early summer of 2014 by an MDS af the University of Columbia, NYC. I fell into a rut and things went ft bad to worse and I was contemplating the “unthinkable,” which I really hadn’t thought through. My son was 14 and my daughter was 9 and I was the only breadwinner of the family. My only concern for my family was that I would need to die in such a way that it could not be labeled as a suicide. I had my policy long enough, but I could not trust in the system to honor the payout for a suicide.

Around that time, my most favorite movie actor – Robin Williams had also received a bed diagnosis . I was devastated. Next thing I heard, he had committed suicide. Oops. I have said the “unthinkable,” but it is time for us to face the monster head on and find a way to make this widely known to PwP’s, newly diagnosed PwP’s and their families.

Thankfully, my family came to my rescue and I agreed to take powerful medications that brought me back from the brink. I survived and my family is doing well still. I am grateful to God and the Universe for everything that I have been fortunate to receive despite my perception that others are more deserving than I. After all there are almost 8 billion people on this planet and I am only one of the lucky ones that is still alive

I learned along the way that life doesn’t end with a Parkinson’s diagnosis. Every doctor that I have met has told me that I was not facing a death sentence. True. However, what they don’t say is that the possibility of suicide in newly diagnosed PwP’s is extremely high. This is an existential problem that is overwhelming in its impact and understated in its awareness.

Unfortunately, I am still haunted by the ghosts of this seemingly “easy way out” or so as it seems. It is a path chosen by many and it rears its ugly head once in a while when the symptoms get worse.

This is a topic that is ripe for involved and in depth discussion.

…………………………… P Bear’s response

I do not expect to do myself in over Parkinson’s. However, at one time I had an uncontrolled chronic pain condition that did cause suicidal ideation.

Each person’s circumstances are unique. It is important to tend to our responsibilities. That said, if someone’s health situation is such that they deem it fitting and proper to leave, it is not my place pass judgment on that decision.

I get that your mention of income is in the context of why it was appropriate for you to stay. However, income is not a measure of worthiness, and a more modest description would be preferable in my opinion.

……………………………. Sharon provided “

You might want to refer to this Korean study found in science direct.

sciencedirect.com/science/a…

“Suicide risk in PD patients is approximately 2 times higher than that in the general population. Psychiatric disorders, and also L-dopa medication need further attention with respect to suicide.”

Another good overview can be found in Neuropsychiatry Review

jnnp.bmj.com/content/90/7/822

“Suicide is consistently listed among the top 10 causes of death in the USA, with rates steadily climbing throughout the 21st century and reaching an annual rate of 13.4 deaths per 100 000 in 2016.6 7 It is a dominant cause of mortality among the elderly and persons with neurological diseases including stroke,9 Huntington’s disease10 and epilepsy.”

” Depression in particular is common in PD, with one meta-analysis suggesting that 17% of PwP suffer from major depressive disorder and 35% suffer from clinically significant depressive symptoms.”

In contrast, suicide is not a major cause of PD death (which are falls and pneumonia.)

Atypical


Atypical parkinsonisms are conditions in which an individual experiences some of the signs and symptoms of Parkinson’s disease (PD) — tremor, slowness, rigidity (stiffness), and/or walking and balance problems — but does not have PD. Atypical parkinsonism can be due to certain medications (some anti-nausea and antipsychotic drugs), other brain disorders (repeated head injury or multiple small strokes) or neurodegenerative diseases.

Parkinson’s Plus

The neurodegenerative diseases, which cause damage or death of brain cells, include corticobasal degeneration, Lewy body dementia, multiple system atrophy and progressive supranuclear palsy. These conditions are often referred to as “Parkinson’s plus” because they mimic PD but have extra associated symptoms (the “plus”). They can be misdiagnosed as Parkinson’s disease because no blood or imaging test can, on its own, make a definitive diagnosis. (As with PD, the diagnosis is based on a person’s medical history and physical examination.) Early in the course, people with Parkinson’s plus syndromes also may get some benefit from levodopa, the drug most commonly used to treat PD. A poor response to levodopa, development of additional symptoms and more rapid progression of disease may eventually differentiate Parkinson’s plus from PD, although it can take years for these differences to emerge. As with PD, no disease-modifying therapy has been discovered for any of the neurodegenerative atypical parkinsonisms so treatment is symptomatic and supportive.Corticobasal Degeneration (CBD)Lewy Body Dementia (LBD)Multiple System Atrophy (MSA)Progressive Supranuclear Palsy (PSP)

Management of Parkinson’s Plus

These diseases are complex conditions that progress over time. As ongoing symptoms worsen and new symptoms arise, a person’s needs will change and caregivers’ roles and responsibilities will evolve. A team approach involving the person with disease, caregivers, family members and multiple medical professionals, is necessary to address the multitude of symptoms. As with PD, no disease-modifying therapy has been discovered for the neurodegenerative atypical parkinsonisms. Treatment relies on medications to lessen symptoms, allied health care services, assistive devices (canes or walkers) when necessary and caregiver support. Palliative care specialists can be especially helpful consultants for managing symptoms and coordinating goals of care.

Levodopa is usually the initial therapy for motor symptoms, although most people do not get a significant or long-term response. Other Parkinson’s medications are sometimes used in conjunction with or instead of levodopa, but in general these are not very effective either. For dystonia, Botox injections can be helpful, and for associated non-motor symptoms (such as memory, behavioral or sleep disturbances), doctors may prescribe a variety of other medications.

Physical and occupational therapy are beneficial, specifically for dystonia, gait and balance problems, and falls. In earlier stages of disease, therapists can develop programs aimed at maintaining mobility, preventing falls or falling in ways to minimize injury. They can also assess the need for a cane or walker. In advancing disease, therapists can teach exercises to maintain joint range of motion, evaluate the home for safety and suggest modifications or adaptive equipment (such as shower grab bars or a raised toilet seat), and determine the appropriate type of wheelchair if one is necessary.

Speech therapists can recommend language exercises for speech disturbances and dietary and/or mealtime adjustments for swallowing problems. If swallowing problems are particularly severe (leading to weight loss, choking or pneumonia), your therapist or doctor may discuss starting a feeding tube. While not always required, it’s worth thinking about this possibility early on so that a person (and their caregiver’s) thoughts can be taken into full consideration.

Throughout the course, social workers can provide educational resources, link to support groups and assist with finding in-home care services or alternative living situations. Palliative care providers can be consulted at any point for help with managing symptoms and determining goals of current and future care. In conjunction with a person’s movement disorder specialist, palliative care experts can aid in optimizing medical therapy while lending extra emotional and spiritual support, and c

https://www.michaeljfox.org/understanding-parkinsons/living-with-pd/topic.php?atypical-parkinsonism

Butyric Acid

Alternative Medicine Review has the article “The Potential of Butyric Acid as an Alternative Treatment for Parkinson’s” atlasbiomed.com “Could Parkinson’s Disease Begin in the Gut” states “butyrate producing bacteria less in PD.”

The man from the Parkinson’s News Today forum, Russ, said he uses T. E. Neesby brand Butyrex. The ingredients are: calcium 480mg, magnesium 240 mg, Butyric Acid 3.6 g. Having never heard of this brand I was apprehensive. But I have been so pleasantly surprised. Butyric Acid is a short chain fatty acid that helps the colon. I was concerned that it would not make it to my colon but perhaps it is because the improvement is very definite.

Oh and I want to add that On the same Parkinson’s News Daily forum, a wife shared that her husband has had significant improvements with mannitol. I started using it a few weeks ago figuring, what the heck, might as well try. I am suddenly smelling things I previously did not even know had a fragrance like my mascara!

…………………………………………………………………………….

Butyric acid naturally occurs in butter, hard cheeses (e.g., parmesan), milk (especially goat’s and sheep’s), yoghurts, cream, and in some other fermented foods (e.g. sauerkraut, pickled cucumbers, and fermented soy products) but in very small and insignificant amounts for gut health.

……………………………………………………………………………

I’ve read the theories that Parkinson’s begins in the gut. And among the foods that numerous sources say that the best diet for gut health includes a lot of fermented food I’ve also read that butyric acid is necessary in the colon to enable the probiotics we take be effective. But it is hard for me to eat enough fermentation to be effective. Therefore I was excited to learn about a supplement to enable me to increase my butyric acid consumption.

Just saying.. for what it is worth.

GERD

ok.. I’m going to attempt to get my blog entry’s linked in the index again. So as I find information such as this item, I’ll be posting them.

GERD or GastroEsophageal Reflux Disease is what happens when the Sphincter at the base of the esophagus that connects the mouth to the stomach, no longer closes tightly and allows stomach acid and food to backflow into the esophagus creating a host of uncomfortable symptoms. The esophagus becomes inflamed and irritated because it is not meant to be exposed to stomach acid.

Who Can Get GERD?

A common issue in people with Parkinson’s disease(PwP) and the general population is GERD. In PwP it is 4.1 times more likely to occur than in non-PwP.

When I had my EGD the Dr. told me that acid reflux had damaged my esophagus. It seems funny that when my lips can’t hold tight enough to keep the drool from making sores at the corners of my mouth, and the opening to the stomach doesn’t close tightly, yet, spasms close off the esophagus in between.

I typed about it all in my Knock on Wood post.

Dust off the sewing machine

Eliza-Jane posted: Trouble turning in bed?

I made myself a couple of satin tubes. When one is in the wash I have a back-up. I bought the satin online. Here are the instructions. Cut a length of satin the same width as your fabric i.e. approx. 1 meter. Then cut a second square the same. Place the first square down, satin side up with the cut ends at the top and bottom. Then place the second piece on top of the first, satin side down with the cut ends left and right. Do not just fold it over on itself, that will not work. Stitch the 2 sides together leaving the top and bottom open. Then hem or make a satin binding for the top and bottom. I used a French seam on the sides. The top and bottom are left open like a tube. Place it on the bottom sheet of your bed and when you get into bed sit on the bottom end of the slip near you. You will find this helps to slide over and up and down. It’s not perfect but it helps.

Humpty Dumpty moments

Neither PwP nor a doctor can predict which symptoms will arise or the severity of those symptoms. It is a lifelong and progressive disease, with symptoms steadily worsening over time, therefore fall prevention for many is the first call to action for preparing their loved one for the journey ahead

Teri wrote : An approach to avoid injury while falling:. Knees, ankle, and all the rest, most important to protect is the HEAD.


So many falls went straight to my head. They didn’t hurt A lot, but I sure got worried as they piled up. So I decided that before my almost inevitable HUMPTY DUMPTY moment, when all the king’s horses and all the king’s men couldn’t fix a thing, I would find a helmet. And this is what I found (sorry, the photo disappeared) I paid $176.00 for it out of pocket; Medicare wouldn’t cover it I have fallen and hit my head many times since, AND IT WORKS

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A pastor recently typed: Don’t let pride or stubbornness get you injured or dead
use a walking aid to prevent falls. My motto, “I’ll crawl before I’ll fall.” and I have done so. Bible says ‘pride goeth before a fall.’ May God bless us on this journey!!!

——————— But to consider the feelings of the PwP, to allow them to not feel conspicuous, and normal, I found two Ribcap products. (see the links)

An owner and wearer of two Ribcap products, the baseball style hat and also the beanie. I love how ‘Protection meets fashion’ in these beautifully crafted pieces of headwear and at-risk persons like myself can wear head protection without the worry of any stigma.

Falls and Common Household Hazards

If you or a loved one has Parkinson’s disease, here are tips for preventing falls around the home:

  • Floors. Remove all loose wires, cords, and throw rugs. Minimize clutter. Make sure rugs are anchored and smooth. Keep furniture in its accustomed place.
  • Bathroom. Install grab bars and nonskid tape in the tub or shower. Use nonskid bath mats on the floor or install wall-to-wall carpeting.
  • Lighting. Make sure halls, stairways, and entrances are well lit. Install a night light in your bathroom or hallway. Make sure there is a light switch at the top and bottom of the staircase. Turn lights on if you get up in the middle of the night. Make sure lamps or light switches are within reach of the bed if you have to get up during the night.
  • Kitchen. Install nonskid rubber mats near the sink and stove. Clean up spills immediately.
  • Stairs. Make sure treads, rails, and rugs are secure. Install a rail on both sides of the stairs. If stairs are a threat, it may be helpful to arrange most of your activities on the lower level to reduce the number of times stairs must be climbed.
  • Entrances and doorways. Install metal handles on the walls adjacent to doorknobs of all doors to make it more secure as you travel through the doorway.

Tips for Maintaining Balance With Parkinson’s Disease

  • Keep at least one hand free at all times; try using a backpack or fanny pack to hold things rather than carrying them in your hands. Never carry objects in both hands when walking as this interferes with balance.
  • Attempt to swing both arms from front to back while walking. This may require a conscious effort if Parkinson’s disease has diminished your movement; however, it will help you to maintain balance, posture, and reduce fatigue.
  • Consciously lift your feet off of the ground when walking. Shuffling and dragging your feet may cause you to lose your balance.
  • When trying to navigate turns, use a “U” technique of facing forward and making a wide turn, rather than pivoting sharply.
  • Try to stand with your feet shoulder width apart. When your feet are close together for any length of time, you increase your risk of losing your balance and falling.
  • Do one thing at a time! Don’t try to walk and accomplish another task, such as reading or looking around. The decrease in your automatic reflexes complicates motor function, so the less distraction, the better!
  • Do not wear rubber or gripping soled shoes, they may “catch” on the floor and cause tripping.
  • Move slowly when changing positions. Use deliberate, concentrated movements and if needed, use a grab bar or walking aid. Count 15 seconds between each movement. For example, when rising from a seated position, wait 15 seconds after standing to begin walking.
  • If you become “frozen,” visualize stepping over an imaginary object, or have someone place their foot in front of yours to step over. Try not to have a caregiver or companion “pull” you, this may throw you off balance and even prolong the episode.
  • If balance is a continuous problem, you may want to consider a walking aid such as a cane, walking stick, or walker. Once you’ve mastered walking with help, you may be ready to try it on your own again!