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.

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” 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.”

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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

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

Alternative inspiration

A caregiver’s blog led me to another Caregiver’s blog when he wrote: Whenever I am looking for alternative inspiration I read this blog.

https://parkinsonscaregivernet.wordpress.com/

Here are a couple excerpts from some of her entries.

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Less nagging – yes, I used the word nagging. Reminding. Warning (“don’t put your cup so close to the edge of the table”) Advising (“you need to use your walker”) Mentioning, emphasizing, etc. (Yes, I used the thesaurus!) Our loved ones will begin to tune us out when we talk too much. How about this – let’s talk less and do more. We can always walk over and move the cup away from the edge, and we can take the walker and put it in their hands without even saying a word. It may mean we have to DO more, but we can do it with a smile that promotes peace.

With decreasing cognition comes the loss of ability to reason, so we should not be surprised that our loved one is less able to cope with anxiety and frustration. That knowledge helps us understand the need to keep them from certain situations where those things might occur. We do this out of our love for them and self-preservation!

Not for Everyone

A sweet person on a group chat asked a question: “How do you make the transition to a nursing home?

I personally don’t think I need to worry about a nursing home to the end of my life, but things do happen. My mother promised her mother she would never put her into a nursing home… But after my mother had a disabling stroke, and she was total care for my father, he had no choice but to put his mother-in-law, Lola into a home. It was the best thing that could have happened, for Lola. She met other ladies she had things incommon with. they would sit together and knit, they watched the same soap operas. She was as happy as a duck in a puddle.

So, with that knowledge…I wanted to share some thoughts gleaned from the chat: and advice that I have put in bold.

At some point your relatives may want to settle you into a nursing home. Here are some of my ideas based on shared experiences. Can you think of more ideas?
What are the advantages of moving into a nursing home?
1. You won’t have to cook your own meals any more. Granted, institutional food is not as healthy or natural as what you might fix for yourself, but normally the meals & snacks are created by professional dietician and are balanced & varied.
2. You won’t have to clean house.
3. You won’t have to do laundry.
4. You will have physical therapy available.
5. You will have activities available.
6. You won’t have to remember when to take your meds.
This may seem like not worth the price of giving up your freedom, but in many ways it will give you more freedom to write, color, listen to music, get on the internet, look out the window, and be yourself.
Before you go, be sure to pack your activities
Additionally, be sure to mark your name on everything clearly with a permanent or laundry marker. Get a silver or gold marker to mark black things. Carve your name in some things with a knife tip, engraving tool or drimel, before you mark it; cellphone, chargers, laptop.
1. Your cellphone & charger.
2. Your laptop. (Check to make sure you will have internet access.)
3. Your coloring books & colors.
4. Your music & something to play it on – headphones or earbuds are best.
5. Address &/or phone books. If you have time, program them into the contacts in your smart phone or take a picture & save it on your laptop. Be sure to save it on Cloud or Google Drive so you will still have it if something happens to your device.
6. A warm coat, hat, muffler (scarf) & gloves in case you get to (or need to) go out in colder weather.
7. Lighter outer wear including a raincoat & rain hat for cool but not cold weather.
8. A week’s worth of warm clothes, spring or fall clothes, and summer clothes.
9. PJ’s or nightgown 3 or 3 & bathrobe & slippers – 2 each.
10. A good grabber for reaching things.
11. Paper & pens & pencils & pencil sharpener.
12. A small safe, hopefully with a setable combination lock, not a key. Set the combination to a number you can easily remember.
Things you will Not need:
1. Furniture
2. Knick knacks
These may be hard for you to leave someday. Begin to eliminate what you can,. It helps to have pictures of favorite items. It also helps to bequeath them to a descendant who will value them. If not, sell them on Craig’s list & at least you will have the money for them.
Speaking of money, nursing homes are expensive. They often take the money from the sale of your home or property, so put the property in a relative’s name first and set up a bank account with a relative that does not have your name on it.
Pets – many nursing homes will allow 1 pet if you feed it and take care of letting it out to do its job yourself.