Tender Mercies

I told you about my suggesting someone gift me a cane (Dec. 2019), my helmet hat, (Feb 2021), and the doctor telling me to get a walker. (7/ 2021 in Transparency page)

I drug my feet for a while, but when John took me to look at walkers, I decided If I was going to get one I wanted one with large wheels, because I could see me using it out in the garden, and I felt small wheels would get stopped by fairly small rocks. And as I was checking various designs with seats… a must, because the doctor said, if I had a walker, I could sit down if I became too tired. Then I saw it… the Cadillacs of walkers… I don’t even see a brand name on it, but It has risers with arm braces with hand brakes. The design is especially good for me, because posture becomes a problem with PwP, and It encourages me to stand up straighter instead of leaning over and looking down at my feet like I have seen many walker users do.

I used it some, to weed the raised garden boxes, while sitting on it. but it was just sitting tucked away in the house most of the time, until we needed to attend a funeral in Utah. Now, I recognize having the walker as a tender mercy. We can put the computer case in the bag that is attached onto the front of the walker and hang my bag (to go under the seat) and John’s C-Pap machine… both over the hand grips. Then, I can walk as fast as I want to… John tows the check on bag on wheels with one hand and hangs onto one of the hand brakes to help me slow down when we go down a grade. It is so nice going through the airport without having to carry any baggage.

When family came to Florida for a visit, we went with them to spend a day at NASA. The walker again came in as a tender mercy, enabling me to sit down, and being escorted into special seating along with all accompanying family members.

I have been feeling so well we decided to fly to Utah for Education Week at BYU.

I again used the walker as we made it through the airport terminals. Such a blessing. Then, again at education week, the classes are located in various buildings all over Each class was 55 minutes long, and then we had 25 minutes to get to the next class. There are in excess of 80 presenters to choose from, and when you find a presenter you like, they have three or four more days of information to share. That is what happened to us, we marked our plan for the next day. The fabulous teacher was in a building very far from the other classes we were most interested in. To get there wasn’t hard on me because much of it was down hill. But the return hike was going up a long up hill paved path that spiraled upward. John, bless his heart, had me sit down on the walker seat and he pushed me the rest of the way up the hill. Another tender mercy.

I had packed my HurryCane and I’m so glad I did. We were being hosted by our Son who has a guest room in his Payson home. I have been using the cane at home when I get up in the night, just for security… so I don’t festinate. The bed in the room is an awesome select comfort bed, but it is really high compared to our bed at home. So, as I was attempting to get off of the bed in the middle of the night (for a potty break) I fell off of the bed! But there was a tender mercy, my right hand fell squarely onto the handle of the HurryCane enabling me to break the fall.

Encouraged by our successful visit in Utah, we were home only 6 days when we flew off to Missouri to my Sister’s newly opened Bed N Breakfast.. It is located in a small community , Trenton, a little bit over an hour’s drive from the Kansas City airport. We visited with some of her other guests and we learned they had come to do research for a book they are writing. My sister was able to get them information for two tours with the Amish people… one which included a horse and buggy ride. During our week visit, we were able to visit 5 sites from Church history that we missed seeing as we took our 50th anniversary journey across the country. The walker was again very beneficial to me as we traversed the airports. And the cane was very helpful within her home. Tender mercies abound.

P.S. For those in my local Parkinson’s group: This could explain my month long absence from the group. I plan to be back next week (the 14th), but I have a dentist appointment tomorrow at a conflicting time.

To Correct my Posture

The Feldenkrais Method® of somatic education uses gentle movement and directed attention to help people learn new and more effective ways of living the life they want. You can increase your ease and range of motion, improve your flexibility and coordination, and rediscover your innate capacity for graceful, efficient movement. Since how you move is how you move through life, these improvements will often enhance your thinking, emotional regulation, and problem-solving capabilities…

I per chance ran across this unique form of Yoga. I have posted 4 videos showing three different presenters demonstrating exercises for posture alignment, freeing neck and shoulder pain, healing your knees & foot and ankle stability. Do your own search and see if any of their approaches work for you.

This an exercise a person can do, laying in bed.

Things in your life you wish to protect

 

I responded to the email from the Davis Phinney Foundation… and was so impressed by the results I got… I simply had to share.

They typed………………

“Here at the Davis Phinney Foundation, we are making the most of the support our community continues to provide. We wouldn’t be able to deliver our education, community outreach, and quality of life programs without you. In thanks we want to help you accomplish an essential task during this special month: creating or updating your will, trust or estate plans to protect what’s important to you.”

“August marks National Make-A-Will Month, giving you a special opportunity to think about the things in your life you wish to protect now and forever. Thanks to our partnership with FreeWill, hundreds of members of our community have completed their wills. You can join them by starting or updating your plans with the free online estate planning tool that makes it easy to update and complete your legal will or trust, all at no cost.”

Davis Phinney Foundation partnered with FreeWill to allow you to create your legacy in 20 minutes and ensure peace of mind and security for you and your loved ones.

If you don’t have time to complete filling out the information now, I encourage each of you to go to the website and start the process… at  https://wwwfreewill.com/  It has a person add a little information and then click on save.  Once you have saved it, your email is the login to re-access it.  The first time you attempt to log back in it gives you a place to set your password. They encouraged us to tell as many people about this tool as we’d like to.  Once you have gone through the program, saving as you go, you can go back through and edit  or correct.

Ours were pretty simple… and the final document that it produced with all the legaleaze and lines for signatures and notary’s signing and verifying was 15 pages.  for those with under aged children, you would have more to complete, indicating guardianship choices, etc.  so probably even more than 15 pages.’

Another cool thing about it is. your account is online and you can simply update it, if you have an address change, add a member to the family, or any number of decision changes. Then reprint it, get it notarized and destroy the earlier version.

Covering My Bases

I suspect it is too late to help the particular patient, but this perspective might be beneficial to some of my readers.

The scenario: Her husband didn’t pick his foot up high enough when approaching the curb. which resulted in a fall on cement and a broken bone. He is hospitalized. After giving him a swallowing test, the doctor recommended the feeding tube to increase his food consumption, to give him the strength needed to go through therapy

A fellow PwP posted the following in a chat with the caregiver who was seeking a second opinion about the Dr’s recommendation to give her husband a feeding tube (placed through the skin into the stomach) to prevent aspirational pneumonia.

………………………………………..

” MDs never speak of potential adverse effects of proposed treatments. In the case of a feeding tube: stanfordhealthcare.org/medi…

“Possible complications associated with a feeding tube include:

• Constipation • Dehydration • Diarrhea • Skin Issues (around the site of your tube)

• Unintentional tears in your intestines (perforation)

• Infection in your abdomen (peritonitis)

• Problems with the feeding tube such as blockages (obstruction) and involuntary movement (displacement)”

incidence of complications is alleged to be low but what is reality? Here is one study of the effect of probiotics on infection. This is the first study I pulled up: mdpi.com/2072-6643/13/2/391

“Differences between the two groups in number of infections (25% intervention group vs. 44% controls), antibiotic therapies (12% vs. 37%)” This was only over a period of 60 days. The number is shockingly high. Trading aspiration pneumonia for peritonitis is not a good trade. Now let us look at prevention of aspiration pneumonia:

General search: scholar.google.com/scholar?…

Prevention of aspiration pneumonia (AP) with oral care: sciencedirect.com/science/a…

“Abstract

AP is a major cause of morbidity and mortality in elderly patients, especially frail elderly patients. The aim of this article is to review effect of oral care, including oral hygiene and improvement of oral function, on the prevention of AP among elderly people in hospitals and nursing homes. There is now a substantial body of work studying the effect of oral care on the prevention of respiratory diseases. Oral hygiene, consisting of oral decontamination and mechanical cleaning by dental professionals, has resulted in significant clinical effects (decreased incidence of pneumonia and decreased mortality from respiratory diseases) in clinical randomized trials. Moreover, studies examining oral colonization by pneumonia pathogens have shown the effect of oral hygiene on eliminating these pathogens. In addition, swallowing training has been shown to improve the movement and function of swallowing-related muscles, also resulting in decreased incidence of pneumonia. These findings support the contention that oral care is effective in the prevention of AP.”

Increased visits to the dental hygienist sure beats a feeding tube.”

…………………………………………………………………

My understanding is, when the PwP has his/her swallowing affected, the signal to close the opening into the lungs doesn’t react fast enough to get fully closed. Usually I strangle 0n clear liquids and am able to cough it back out. Occasionally a crumb of toast or some such thing will get in the wrong place triggering a serious coughing fit. So far, I am okay.

When I learned about aspirational pneumonia I was proactive and received a pneumonia vaccination. I have become very mindful about flossing and brushing twice a day. And I get a professional cleaning twice a year.

Trying to cover all my bases.

Sue

Brain changes

I have been going to physical therapy this month. I am in a program designed to help people with Parkinson’s retrain the brain to help us with balance and prevent falls. I think I am a slow learner. There are so many different aspects to it. how to turn, how to keep the feet from crossing over… or from bringing feet too close together. My therapist is constantly reminding me: ‘shoulders back’, ‘don’t drag your foot’, ‘look straight ahead’, ‘stand up straight’, ‘think big’. ‘take bigger steps’, ‘pick up your foot higher’, etc…

Yesterday was my tenth session, so they had me retake the test that I received at intake. They said I had improved some on my times, but I have a long way to go. They showed me a before treatment and after therapy for another patient, and my honest input was “He looks like he is walking wearing a wet diaper.” I am hoping, when I see my after therapy video, my gait isn’t quite as exaggerated as his was. In my ‘before treatment’ video I was putting one foot directly in front of the other and very awkward when turning around to walk back I have five more sessions scheduled in July… which should be the end of the BIG therapy program. I do not know if they will extend it into August. They send me home with exercises to do at home as well.

I liked the explanation for our loss of balance that I copied from a blog:

Difficulties with balance and walking are linked to the brain changes that take place with PD. For people who don’t have PD, balance is automatic, a reflex. But Parkinson’s Disease affects the basal ganglia (a part of the brain essential to balance). To compensate, the brain assigns another brain area — an area used for thinking — to take over. The thinking part of the brain, mainly the frontal cortex, can’t control balance automatically. The result: for many people with PD, balance becomes less automatic.

https://www.parkinson.org/blog/research/Walking-with-Parkinsons-Freezing-Balance-and-Falls

Worth Trying

My holistic GP keeps a close eye on our lab results; he has me on 5,000iu of Vitamin D per day, but he has John on 10,000iu of vitamin D per day. I suspect John’s medication for his factor5 blood clotting issues may be why he needs so much.

Marisa Wexler wrote the following discussion in the Parkinson’s News Today newsletter. Just passing it on in case it rings logical to any one who reads this.

p.s. I have no idea how the serum 25, compares with the capsules of vitamin D that we take.

High levels linked to fewer cognitive problems.

“People with Parkinson’s disease who have higher levels of vitamin D in their blood are less likely to experience cognitive impairment or dementia, a new study suggests.

The results provide support for future research to test whether vitamin D supplements could reduce the risk of cognitive problems for Parkinson’s patients.

The study, “Correlation between serum 25(OH)D and cognitive impairment in Parkinson’s disease,” was published in the Journal of Clinical Neuroscience.

Vitamin D plays a number of important roles, including to help regulate calcium levels and modulate nervous system activity. Prior research has linked low levels to an increased risk of falls, depression, and sleep problems in people with Parkinson’s.

Researchers in China analyzed possible connections between cognitive outcomes and levels of serum 25(OH)D, a form of the vitamin that’s easily detectable in blood.

The study enrolled 112 people with Parkinson’s at the Affiliated Hospital of Xuzhou Medical University, China. A group of 70 people with no known health problems were included as controls. In both groups, slightly more than half the participants were male, and the average age was in the mid-60s.

Cognition was assessed with the Montreal cognitive assessment (MoCA), which is used to test for dementia. Based on standard criteria, Parkinson’s patients were divided into those with normal cognition, those with mild cognitive impairment (MCI), and those with Parkinson’s disease dementia (PDD).

“This is one of the few studies investigating the association between serum 25(OH)D and cognitive impairment in Chinese [Parkinson’s] patients,” the researchers wrote.

They found that average vitamin D levels were significantly higher in the healthy controls than the Parkinson’s patients: 56.54 vs. 45.86 nanomoles per liter (nmol/L). Among the Parkinson’s patients, average levels were highest in those with normal cognition (53.67 nmol/L), followed by those with MCI (44.57 nmol/L) and then PDD (36.53 nmol/L).

Higher levels of serum 25(OH)D were also significantly associated with better MoCA scores. This association remained significant even after statistical adjustments for age, gender, body mass index (BMI), years of education, and sunlight exposure.

Researchers found that assessing vitamin D levels could be used to accurately predict cognitive impairment risks. These results suggest that “low serum 25(OH)D may be involved in the occurrence and development of cognitive impairment in [Parkinson’s] patients,” the researchers wrote.

The scientists did emphasize that, because of the way the study was designed, it’s not possible to make any definitive conclusions about cause and effect with regard to vitamin D and cognition in Parkinson’s. They said further research is needed to see whether supplements may protect against cognitive problems in Parkinson’s.

Although efficacy remains to be proven, “long-term vitamin D supplementation carries a low risk and many possible benefits for patients,” the researchers concluded. “Therefore, evaluating vitamin D for patients with [Parkinson’s] and supplementing vitamin D for deficient patients are worth trying.”

Of c0urse, the use of any supplement should be discussed with your doctor, before you try it.

Sue

TTFD

I refer you to my post on 2/28/2020

Flops and flips

After reading this post by Gcf51 in a chat group… HealthUnlocked I am changing the amount of Thiamine HCL I take each day from 4/day to 1/day AND I am going to increase the amount of Allithiamine I take daily. I have done this for the past two days and I am feeling really good. I’ll keep you updated.

He said: “I have negative feelings about mega dosing Thiamin HCL (B1), {Just to hope that some of the Thiamin gets in your brain cells (100mg is 6,667% of the RDA, It is suggested that we are suppose to take 200 times that and, the 200mg I take makes no difference)}. According to RDA 25mg of B1 is more than 2000% of what you need to function.”

“Thiamine {tetrahydrofurfury disulfide (TTFD/ allithiamine), on the other hand has been shown to increase B1 in brain cells and I felt the difference in one 50mg dose. The TFD component which is shed when entering your cells does require methylation, but I take way more than 50mg of methyl donors. So, I ask: How is the HCL component you take disposed of? I am not a doctor: It’s probably just, a little additional stomach acid.”

“TTFD is a form of thiamine that is water-soluble, and much more difficult to find in vitamin shops. Brand names include Lipothiamine, Allithiamane, Adventan, Alinamin-F, Benlipoid, Bevitol Lipophil, Judolor. TTFD comes in 50 mg capsules. And the primary side effect is you smell like garlic after taking it. (Well I haven’t smelled my breath) nootropicsexpert.com/vitami…“

“And, Thiamine tetrahydrofurfuryl disulfide (TTFD) is the synthetic counterpart of allithiamine, occurring naturally in garlic. Allithiamine was discovered in Japan in 1951… its metabolic effect was (is) much more powerful than the thiamine (assume they mean HCL and wonder how much more powerful). pubmed.ncbi.nlm.nih.gov/153….”

“excellent Video on TTFD  healthunlocked.com/cure-par… ‘ ***If it increases dopamine in brain is it a cure????”

“You may ask, what difference: It’s nice to be able to brush my teeth without my hand doing something crazy. And yes, I am still taking the 200 mg of Thiamin HCL.”

“at some of the Thiamin gets in your brain cells (100mg is 6,667% of the RDA, It is suggested that we are suppose to take 200 times that and, the 200mg I take makes no difference)}. According to RDA 25mg of B1 is more than 2000% of what you need to function.”

“Thiamine {tetrahydrofurfury disulfide (TTFD/ allithiamine), on the other hand has been shown to increase B1 in brain cells and I felt the difference in one 50mg dose. The TFD component which is shed when entering your cells does require methylation, but I take way more than 50mg of methyl donors. So, I ask: How is the HCL component you take disposed of? I am not a doctor: It’s probably just, a little additional stomach acid.”

:TTFD is a form of thiamine that is water-soluble, and much more difficult to find in vitamin shops. Brand names include Lipothiamine, Allithiamane, Adventan, Alinamin-F, Benlipoid, Bevitol Lipophil, Judolor. TTFD comes in 50 mg capsules. And the primary side effect is you smell like garlic after taking it. (Well I haven’t smelled my breath) nootropicsexpert.com/vitami…“

“And, Thiamine tetrahydrofurfuryl disulfide (TTFD) is the synthetic counterpart of allithiamine, occurring naturally in garlic. Allithiamine was discovered in Japan in 1951… its metabolic effect was (is) much more powerful than the thiamine (assume they mean HCL and wonder how much more powerful). pubmed.ncbi.nlm.nih.gov/153….”


“excellent Video on TTFD (doesn’t work as I expected – I had to page cked.com/cure-par… ***If it increases dopamine in brain is it a cure????”

“You may ask, what difference: It’s nice to be able to brush my teeth without my hand doing something crazy. And yes, I am still taking the 200 mg of Thiamin HCL.”

Following

To any of my followers who are caregivers dealing with a PwP plus dementia
I’d like to suggest a blog by a caregiver who provides such positive insights and suggestions to help a caregiver to cope he goes by AdjunctWizard
I just wanted to share an example of his writing :follow him.

Cheryl will start to tell a story about an incident that occurred earlier to me as though I am someone else. In the story she will refer to me in the third person as “your dad.” I think that she thinks I am one of our children but I could merely be a nice someone with her because sometimes she refers to me as “Paul.”
I used to resist this a bit and point out that I was me. Lately I quit doing that. I quit doing it because it aids me in finding where she is in her head and it serves no useful purpose other than to make me right and her wrong.
Typically it is a late afternoon discussion as we head somewhere for dinner. In the car she will start with, ” you know your dad and I …” After she gets her thought out I can respond with, “No kidding, I didn’t know that” or some other suitably benign response. If there is more to the story she will go on.
There is so much to learn on this road of Parkinson. If you have not tried it, take a deep breath, enjoy the ride, the scenery and the stories along the way. You cannot be sure of the weather, road conditions or the vistas ahead. Be one with the journey.

‘Go to https://adjunctwizard.com/2022/05/11/more-about-dementia To see this offering by an eldercare organization.

t

livingwithdementiablog wordpress attributde to Norman McNamara)

Why don’t you like me?

The title of this blog post is the name of the poem posted in a discussion group. Zella wrote earlier this week… “I thought my husbands poem might be suitable for Parkinson’s Awareness Day!”

To which LAJ responded… “I thought it was going to about a caregiver who thought their husband didn’t like them anymore, which is what it felt like before I knew what was happening due to the frozen face that seemed to glare at me all the time😟”

WHY DON’T YOU LIKE ME?

“When did it start?” the doctor said “The hate campaign that’s in your head”

It started out with a little thing A parcel neatly tied with string

I couldn’t get the knot undone It really wasn’t too much

The problem very quickly spread A champagne cork encased in lead

Just pull the corner, plastic tag It’s just like opening up a bag

But heat-Sealed cartons won’t comply They tear or shred, I wonder why?

They should open up for me Not stay tight shut. It’s misery

It cooks in minutes on the pack But opening it, I’ve lost the knack

It doesn’t work I can’t get in, This thing is going in the bin.

I’ve stabbed it with a table fork Tempers rise, I cannot talk.

Have all these packs developed hate For me no meals, note the date

But all my efforts are in vain Four broken nails what a pain.

I’ve tried with other simple things 10 pound note develops wings

It floats and flutters then it sighs. I’m out I’m out it loudly cries

It won’t go back without some force All my notes have changed their course

Why do all things hate me so? Why won’t they just go with the flow

Is it old age that treats me thus I can’t go on I’ll make a fuss

Coordination is the key Its making such a fool of me

Filing papers opening mail all tasks that I can fail

It was my mother that I told You take too long, it’s cause you’re old

Parkinson’s is such a sod For my old back another rod

I’d change the duvet if I could My fingers seem to change to wood

The pillowcase will not comply It really makes me want to cry

Zips and buttons stubbornly Are never like they used to be

Sometimes it really makes me laugh I seem not whole I’m cut in half

The half that works has disappeared The other half behaves quite weird.

It moves and shakes all on its own It will not do the things It’s shown

My life is turning into farce And Parkinson’s can kiss my arse

Written by…. John Smith