Take it with you,

Being proactive, when I learned about the Aware in Care Kit, I requested one. And received it Feb of 2019. Thankfully, I have not needed to go to the hospital since acquiring it, but I carry a change of underwear, and some light weight knee pants and extra incontinence pads along with the other things included in the bag. with me whenever I am on an outing… along with wearing the alert bracelet. Having the bag stocked for such emergencies has saved me from embarrassing experiences on at least three different occasions

The link is included below, for all proactive Parkies. Additionally, there are links to download the action plan, the medical alert card, medication card, fact sheet and reminder slip,,, in case you need any of them prior to the arrival of your bag. This is from the web:

“The Parkinson’s Foundation launched the Aware in Care campaign in 2011 to help people with Parkinson’s disease (PD) get the best care possible during a hospital stay. According to a recent study, three out of four people with Parkinson’s do not receive medications on time when staying in the hospital. With more frequent hospital visits and a high sensitivity to the timing and dosing of PD medications, people with Parkinson’s face great risks in the hospital.”

“To protect, prepare and empower people with Parkinson’s before, during and after a hospital visit, we developed the free Aware in Care kit with tools and information to share with hospital staff during a planned or emergency hospital visit.”

“Aware in Care kits can be requested from your local Parkinson’s Foundation Chapter or Center of Excellence. If you do not live in an area with a Chapter or center, you can order a kit online.”

How many options?

Someone else made a comment: “We take meds to make the symptoms bearable. If your symptoms dont require meds yet dont take them, but if they do why deprive yourself? You should not feel guilty or be made to feel guilty and its not giving in.”

Kelly Crumrin wrote the following in an article in the My Parkinsons Team community. She has given pretty thorough details about the numerous options. “People with Parkinson’s can improve their symptoms and quality of life with effective treatment options.”

“Symptoms and severity can vary widely between individuals with parkinsonism. There is no standard treatment for Parkinson’s. Guidelines for Parkinson’s treatments are based on what symptoms a person has, the severity of the symptoms, how long they have had Parkinson’s, which type and stage of Parkinson’s they have, tolerance of side effects, the age of the person, and any other health conditions they have or medications they use. Some treatments are highly effective for one type of Parkinson’s, but ineffective for others. In most people, medications gradually lose their effectiveness as the disease progresses.”

Medications for Parkinson’s

“In Parkinson’s, the brain cells that produce a neurotransmitter — a chemical that helps nerves communicate — called dopamine begin to shrink and die. With too little dopamine, the brain cannot facilitate movement as well. Researchers believe parkinsonian symptoms begin when the level of dopamine falls to about half of normal levels. Levels of other neurotransmitters rise, trying to compensate for the lack of dopamine, and this results in more dysfunction.”

“Many medications for parkinsonism are aimed at improving motor symptoms by raising levels of dopamine, replicating the effects of dopamine, or controlling levels of other neurotransmitters. Other medications are taken to treat side effects of Parksinson’s treatments, psychotic symptoms, or low blood pressure that leads to falls soon after standing.”

“Most Parkinson’s medications need to be carefully timed on a daily schedule around meals, bedtime, and waking. Correctly timing medications ensures the most effectiveness, avoids “off” times when symptoms worsen, and avoids dangerous interactions with food or other medications. There are many mobile applications available to track medication timing.”

“Many Parkinson’s medications can cause serious withdrawal symptoms if stopped suddenly. Other drugs must be out of your system for weeks before you start another type of medication. If you want to stop or change medications, always discuss a plan with your doctor for tapering off.”

Dopaminergic Medications

“The first drugs offered to many people with Parkinson’s are dopaminergic drugs — drugs that work by influencing dopamine levels. Dopaminergic drugs include the combination medication Levodopa/Carbidopa (sold under the brand names SinemetParcopa, and Rytary). Levodopa/Carbidopa is usually taken orally. If Levodopa/Carbidopa is working, but the person still has “off” hours when symptoms are more pronounced, the doctor may recommend Duopa, a system that infuses Levodopa/Carbidopa directly into the small intestine via a small, battery-powered pump.”

“These drugs eventually become less effective and wear off sooner, resulting in “off” time. When Levodopa/Carbidopa begins to lose effectiveness, some people switch to Stalevo (Levodopa/Carbidopa/Entacapone), which adds a third drug to the combination. Entacapone, sold separately under the brand Comtan, is a catechol-O-methyltransferase (COMT) inhibitor. Entacapone is believed to work by increasing the amount of Levodopa that reaches the brain, making Levodopa effective at significantly lower doses. Tasmar (Tolcapone) is another COMT inhibitor. COMT inhibitors can cause liver damage and worsen side effects of Levodopa.”

“Over the long term, Levodopa therapy causes many people to develop dyskinesia — involuntary swaying, writhing, or head-bobbing movements — as a side effect. Amantadine, sold under the brand names Symmetrel and Gocovri, may be prescribed to treat dyskinesia. Amantadine is classified as an antiviral and anti-Parkinsonian drug. It is believed that Amantadine works by increasing the amount of dopamine available in the brain.”

“Some people also develop impulsive or compulsive behaviors — gambling, shopping, or sexual activities — abnormal to their usual habits and personality. Side effects become more likely and worsen with higher dosages. Due to these serious side effects, people with Parkinson’s may choose to delay starting Levodopa until motor symptoms begin to disrupt their daily activities.”

Dopamine agonists may be given alone or in combination with Levodopa/Carbidopa. Dopamine agonists are believed to work by making brain cells more receptive to dopamine. The dopamine agonist class includes oral drugs Apokyn (Apomorphine), Mirapex and Mirapex ER (Pramipexole), and Requip (Ropinirole). Neupro (Rotigotine) is administered as a skin patch.”

“Serious side effects of dopamine agonists can include dizziness, fainting, and increased risk for heart problems.”

“When dopamine levels drop, levels of another neurotransmitter called acetylcholine rise and cause additional symptoms. Anticholinergics such as Artane (Trihexyphenidyl) and Cogentin (Benztropine mesylate) are believed to work by regulating levels of acetylcholine in the brain. Anticholinergics can cause or worsen memory problems and constipation.”

“Early in the course of Parkinson’s, some people take medications from a class of antidepressant drugs called monoamine oxidase inhibitors (MAOIs). MAOIs are believed to work by preventing the breakdown of dopamine in the brain, thereby increasing the amount of dopamine available. MAOIs are somewhat effective at treating Parkinson’s symptoms, and some may help protect the brain and slow the progress of Parkinson’s disease. MAOIs include Azilect (Rasagiline), Xadago (Safinamide), and Selegiline, sold under the brand names Eldepryl and Zelapar. MAOIs can worsen side effects caused by Levodopa.”

Symptom Management Medications

Exelon (Rivastigmine) is an acetylcholinesterase inhibitor. Exelon is believed to work by increasing the amount of a neurotransmitter called acetylcholine in the brain.”

Northera (Droxidopa) treats orthostatic hypotension (dizziness upon standing up) in people with Parkinson’s disease.”

“Psychotic symptoms such as hallucinations, delusions, and paranoia may be caused by Parkinson’s or medications used to treat it. Antipsychotics such as Seroquel (Quetiapine) and Nuplazid (Pimavanserin) may be prescribed to reduce psychotic symptoms. Antipsychotics are believed to work by interfering with serotonin receptors in the brain. Unfortunately, some antipsychotics can worsen Parkinson’s symptoms.”

“Some people with Parkinson’s use medical marijuana to treat symptoms including pain, mood problems, and sleep disorders. Depending on your symptoms, one strain of medical cannabis may provide more benefit than another.”

“Depression and anxiety are common in Parkinson’s, as in all chronic conditions. Some people take antidepressants to improve their mood and outlook. Work with your doctor to choose an antidepressant that will not interact with Parkinson’s medications or other drugs you take.”

A word of caution

It is unwise to assume that all new symptoms are just due to the progression of Parkinson’s or in response to a person’s Parkinson’s medication. I have followed a chain of conversation on a Parkinson’s chat room used by both Parkies and their care givers. What follows began a month ago with a daughter’s concern for her mother’s decline in health. The daughter just posted the following:

“Thank you all for your insight and caring. All things we tried did not help. It turns out that while we were focusing on Mom’s PD, she was slowly and unknowingly overdosing on Metformin (Glucophage) which was supposed to control her type 2 diabetes. She had been taken off her other diabetes medicines because she was otherwise able to control glucose with diet. I don’t know why her GP left her on such a high dose of Metformin– 1500mg/day! So the metformin caused a build up of lactic acid, which caused kidney failure and sepsis, and she is now at this moment in a critical care unit fighting for her life, on dialysis, blood transfusions, and in a medial coma. We don’t know day to day if she will recover from this (she went in to the hospital by ambulance 6 days ago) and are preparing to let her go if she doesn’t improve. We have had small flickers of hope: her blood levels are better, kidneys have started to work a little, she may be able to be weaned off the respirator any day. But we are in a horrible limbo waiting, and all the while cannot even visit her due to Covid restrictions.”

“I post this with a heavy heart and in hopes that anyone out there who takes metformin will insist on regular re-evaluation on the need/dose for this medicine. All the symptoms were there with my mom: extreme fatigue, confusion, loss of appetite and vomiting, severe dehydration, muscle weakness, hallucinations, all with a rapid decline in overall health– but no one thought to look at those symptoms as anything other than PD issues. Please please if you or a loved one takes Metformin and has any of these symptoms, a simple blood test is all it takes to rule out metformin overdose (the results will show high lactic acid).”

My step mother is suffering with kidney failure … possibly due to similar medication overdosing.

I hope someone finds this information helpful.

Dat Scan and Dopamine

Last time I went to the neurologist, I told him, “I do not see any difference between when I take the carb/Levo or don’t take it” He told me to discontinue taking it and “You will see”. Well, I do not see any difference, and I think this article explains why. I intend to take a copy of the article, highlighting the part I have in Bold Blue and underlined. So I am not taking any more dopamine for the immediate future.

—————–

“Using advanced computer models, neuroscience researchers at the University of Copenhagen have gained new knowledge about the complex processes that cause Parkinson’s disease. The findings have recently been published in the Journal of Neuroscience.

“The defining symptoms of Parkinson’s disease are slow movements, muscular stiffness and shaking. There is currently no cure for the condition, so it is essential to conduct innovative research with the potential to shed some light on this terrible disruption to the central nervous system that affects one person in a thousand in Denmark.”

“Dopamine is an important neurotransmitter which affects physical and psychological functions such as motor control, learning and memory. Levels of this substance are regulated by special dopamine cells. When the level of dopamine drops, nerve cells that constitute part of the brain’s ‘stop signal’ are activated.”

“This stop signal is rather like the safety lever on a motorised lawn mower: if you take your hand off the lever, the mower’s motor stops. Similarly, dopamine must always be present in the system to block the stop signal. Parkinson’s disease arises because for some reason the dopamine cells in the brain are lost, and it is known that the stop signal is being over-activated somehow or other. Many researchers have therefore considered it obvious that long-term lack of dopamine must be the cause of the distinctive symptoms that accompanies the disease. However, we can now use advanced computer simulations to challenge the existing paradigm and put forward a different theory about what actually takes place in the brain when the dopamine cells gradually die,” explains Jakob Kisbye Dreyer, Postdoc at the Department of Neuroscience and Pharmacology, University of Copenhagen.”

A thorn in the side

“Scanning the brain of a patient suffering from Parkinson’s disease reveals that in spite of dopamine cell death, there are no signs of a lack of dopamine — even at a comparatively late stage in the process.”

“The inability to establish a lack of dopamine until advanced cases of Parkinson’s disease has been a thorn in the side of researchers for many years. On the one hand, the symptoms indicate that the stop signal is over-activated, and patients are treated accordingly with a fair degree of success. On the other hand, data prove that they are not lacking dopamine,” says Postdoc Jakob Kisbye Dreyer.”

Computer models predict the progress of the disease

“Our calculations indicate that cell death only affects the level of dopamine very late in the process, but that symptoms can arise long before the level of the neurotransmitter starts to decline. The reason for this is that the fluctuations that normally make up a signal become weaker. In the computer model, the brain compensates for the shortage of signals by creating additional dopamine receptors. This has a positive effect initially, but as cell death progresses further, the correct signal may almost disappear. At this stage, the compensation becomes so overwhelming that even small variations in the level of dopamine trigger the stop signal — which can therefore cause the patient to develop the disease.”

The new research findings may pave the way for earlier diagnosis of Parkinson’s disease.


Story Source:

Materials provided by University of Copenhagen – The Faculty of Health and Medical Sciences

Too Busy to type

I transferred to another neurologist, on March 31st. When I handed the office person the requested DatScan & MRI summaries, reports from previous physicians, and lab results, I included a few extra, unsolicited pieces of information. She punched holes in everything to place in a binder. I did not notice until we were back home… I failed to give him my cover letter! It was still folded in my appointment calendar. :/

I’ve been elated with the results. At my last visit with my NO LONGER neurologist visit, he had me on three different medications and said he could tell I was under medicated, because I still had the Parkinson’s Mask. My new neurologist suggested I try… “Instead of eating a cracker with the Carb/Levo why don’t you try taking it with 8 oz of water 1/2 hour after you eat?” And he took me off of two medications the previous Dr. had put me on… but, he wrote a script for Amantadine, which is an antiviral drug used for preventing or treating people with the flu and is also a dopamine promoter, saying, “It may help with your drooling. Take one tomorrow, and let me know how it made you feel when I see you on Wednesday.”

When I went for the nerve conduction testing on Wednesday, I handed Dr. Choudhry my Cover page with details of my experience added at the bottom of the page. He told us not everything is related to Parkinson’s and he thought what I was experiencing was neuropathy. (he had also requested some blood work, looking for signs of diabetes.) He was surprised to learn I had very little loss of nerve conduction. I will most likely hand him a paper including links addressing foot dystonia and Parkinson’s patients, the next time we meet.

John told me, he observed Dr Choudhry use a hole punch and place the cover letter in the folder. I heard the doctor tell John, “She makes very good notes. They are very helpful.” So, are you wondering what I thought of the Amantadine?

I noticed at two hours after I swallowed the capsule, I was still drooling, But then twelve hours after, I was drooling again. But the most significant to me was the energy! After so many months of dragging myself from seat to seat, I had energy! I’d weeded, helped move some lumber, watered the garden and drug hoses from front yard to the back, yet, when I went into the house, I didn’t collapse into my chair feeling utter exhaustion! Instead, I prepared dinner for the seven of us.

The doctor asked me to take two a day. I have followed his directives and I have not been disappointed. I have weeded each morning. (The flower bed had been very neglected.) I have been up and doing things all day! I sure hope this honeymoon doesn’t get over for a long time.

I have looked at the possible side effects… none of them have bothered me, so far. But I found a note from the wife of a Parkinson’s patient, saying she had to discontinue it, because he lost his inhibitions. For an example: When they went out to eat, he would take slices of salami from the salad bar and put them in his pockets. She found the greasy remnants in his pockets when doing his laundry.

I am so grateful for the blessings I am experiencing during this journey. Yesterday, with the aid of two grand children, we completed weaving another plastic sleeping mats, while listening to Conference. Today, I think I have pretty well followed the law of the Sabbath… and done nothing, but listen to uplifting words. My goal for this week is to finish weeding the flower beds and work in the garden.

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survival guide

I had an experience today… last Monday. (I thought I posted this , guess I was suffering the effects of my oops a bit longer than I realized) I’m a survivor, and I am sure better days are ahead.

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Bottom line? when the pharmacy fills your script, keep the lights on brightly when you fill your pill sorters! The neurologist has me on a strict time table which requires me to set the alarm to go off at 3 a.m. & 7 a.m. I have the pills set on the nightstand along with the required water. I noticed the shape of the pill had changed, but confirmed it was the correct one. What I failed to notice was the new shape was identical to another prescription medication which helps me relax to sleep. There is also a slight difference in color. Although it is an anti-seizure medication, I call it my sleep-aid. I only take 1/2 tablet per night.

You probably guessed what I did? Yep, instead of 1/2 tablet I took three whole sleep-aids. That is six times what works for me! I will be OK. But I have been VERY unsteady on my feet today Monday. I have recently been humbled to depend on the aid of a cane for stability. But today Monday? I was grateful for my husband’s wheel chair and a dear neighbor who rolled me through the line, enabling me to mail the Christmas packages.

I rarely nap… but today after the PO…I didn’t wake to stay up till nearly 7 p.m.

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.

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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.

Sialorrhea (chronic drooling)

As taken from the Parkinson’s News Today Newsletter Sep 3, 2019

“Sialorrhea, or drooling, refers to saliva in such excess that it spills from the mouth. This is a common and bothersome symptom of neurological disorders like ALS, cerebral palsy, and stroke, and it affects up to 75% of all Parkinson’s patients.”

“Sialorrhea can be highly distressing for patients and their caregivers and can have a significant, negative impact on quality of life. If left untreated, pooling of saliva can lead to irritation of the skin around the mouth, oral hygiene complications, speech difficulties, and sleep interruption,”

“These impacts can leave patients with compromised physical well being, as well as feeling embarrassed by their condition, causing a lack of confidence and isolation,” Isaacson added.

…………………………………..

Sialorrhea, or drooling, is the medical term for an excess spillage of saliva from the mouth. Chronic sialorrhea is when you’ve experienced this drooling for at least 3 months.

Sialorrhea can affect up to 3 out of 4 patients with Parkinson’s disease.
In many patients with sialorrhea, it’s not that their salivary glands are making too much saliva — it’s that their neurodegenerstive disease, such as PD, makes it hard to swallow. The saliva builds up or “pools” in the mouth, which leads to drooling.

For me, I think it isn’t really all that hard to swallow. I don’t feel the build up so I don’t think to swallow. So when am focusing on a task, I don’t feel the saliva building up or falling from my mouth, until it hits my hands. It is that I don’t think to swallow.

I have learned to keep a cloth in the corner of my mouth, when I retire for the night and the Amandatine is no longer in effect, to wick out the saliva.

I saw an ad today for Myobloc… an injection therapy for resolving the problem, but the possible side effects sound so horrific, I’d have to pass on giving it a try

9th… From Out-Thinking… When a change in care is needed

What follows is excerpts from a VERY, VERY LONG blog entry from ‘Out- Thinking Parkinson’s’ Detailing how Dr Gary Sharpe, Phd became terribly ill, poisoned by his PD medications, and the ensuing journey, hospitalization, failures from medical personnel, diagnosis, treatments and subsequent relocation. (As a pwp, I found Dr. Sharpe’s detailed story very fascinating and insightful and thus, I encourage readers to click on the link at the end of this blog entry.)

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“During my stint in hospital, I had plenty of time to think, and gather experiences and insights, about what my care needs actually are now, which I had somewhat buried my head in the sand about before. As perhaps these needs will go for other people with PD more generally, I have therefore sought to spell these out here in case they help fellow people affected by PD start considering their own needs too.”

The overarching theme of these needs is “Feeling Safe”.

1. I realized from being on the hospital ward that having people around me 24/7 is actually very important. This was confirmed to me during a week when I was isolated in a side-room off the ward, due to an episode of diarrhea. I felt much more vulnerable, much more anxious, and much more depressed than when I was on the ward. Indeed, I realized that when I was living at home with my parents, I would feel very unsafe if they went out and left me alone even for a couple hours – I would literally become scared stiff and my PD drugs were much less likely to work. This was also underlined in a moment of epiphany during a counselling session with a hospital mental health team member while in isolation. I burst into tears and cried “I’m so lonely; I’m so scared to be on my own”.

2. I need someone else to take control of my medicine, since if I am left to self-medicate, I will once again start self-poisoning and over-dosing. I know I will be unable to resist reaching for extra drugs whenever I feel fearful enough, am having a bad “off” period, or if I panic, and the rising drug burden cycle would begin again. I need this external control to be reliable enough such that the medicine will be delivered reliably on time, due to my massive anxieties around this. The complex medicine regime I have on leaving hospital, with both scheduled and “when-needed” PD pills and injections and painkillers (I’m still on morphine, but am trying to wean myself off it) means that someone would need to be on hand virtually every hour of the day.

3. I require good, nutritious food preparing for me and need to get back to, and then maintain, a healthy weight. This includes encouragement to eat, and reassurance to that I shouldn’t feel belittled in the instances I need assisted feeding when I am completely “off” during meal times.

4. I need caregiving by people who have a good understanding of the disease and my condition, and who don’t ignore, mock or disbelieve me – implicating that it is “all in my head”, which occurred a lot in the hospital, for example, is anathema to me and causes my symptoms to increase. I need knowledgable external oversight and monitoring of my physical and mental health, intervention if things start to go awry again, and reassurance and a calming voice when I frequently get over-anxious.

5. I need to be allowed and encouraged to move around and exercise/stretch while “off” to prevent rapid disease progression, not to be confined to bed or bedroom for fear that I might fall or freeze, yet be quietly watched over when I do try to mobilize.

6. I need the opportunity, encouragement and any required help to engage in plenty of social activities, to go outside and further afield, and to meet new people, without having to schedule such opportunities. I need caring oversight to ensure I don’t social isolate myself nor become agoraphobic again.

7. I need the opportunity, encouragement and any required help to engage in plenty of stress relieving and management activities, such as arts and crafts, singing, dance and music therapy, puzzles, etc.

http://www.outthinkingparkinsons.com/articles/hospital

Stem Cells

I have discovered two separate posts from unrelated sources with intriguing details about Stem Cells Therapy.

……………………………………….. The first indicating a need for additional research:

“Talked to my husband’s neurologist yesterday. He is a movement specialist, very down to earth. He said stem cell therapy will probably be the answer in the future. He said their doing a lot of research on it in Russia. A few of his patients went there for the surgery. The problem is they have figured out how to tell the stem cells where to work. They work in all parts of the body. The one client had the stem cells infused into her spinal system and the brain stem cells started working there causing more problems with her walking. They had to go back and try to remove them. He said it needs a lot more research”

…………………………………………….. And this glowing report: in which the author believes he can credit the therapy with his improved quality of life:

 I have been through the Memory Testing and it was never connected to PD meds. A lot of us get Parkinson’s type of Dementia and my Neurologist didn’t want to put me on anything until it got worse.

Mine slowly got worse over the years, then after we moved away from Round Rock, Tx. and I hadn’t found another Doctor yet. I couldn’t remember from one second to the next and I got so aggravated at myself and would get so embarrassed when talking to people. I could never complete a sentence because I couldn’t remember what I was talking about, this was constant. I would think of something so I would try to write it down but by the time I picked up the pen, I would forget what I was going to write.

Since I had the Stem Cell Therapy my Dementia has improved and I don’t have any issues now, other than forgetting something every now & then (normal old age). As well as all my other issues improved including my PD symptoms.

I know it’s not easy to deal with memory issues and it is scary as well. Just be careful with them jacking with your meds because then it could make worse issues for you. I would recommend doing your research on the PD meds you are taking and see if any of the side effects cause Dementia type of issues. From what you’re saying you have not had any changes in your PD meds in a long time, so I would find it hard to believe it is now causing you to have memory issues.

Remember to take charge of your health care and be armed with your research & knowledge of the good & bad issues with the PD meds, what’s worked for others with PD, and the more knowledge you have the better. A Doctor can only give you advice and recommendations but in the end, it’s your choice how you want to proceed. A good Doctor will work with you on a plan that works for you on this PD journey. Too many Doctors just prescribe the PD meds and say I ‘ll see you again in six months, this is bull crap.

Hang in there, it will get better!!! Take Care;  Tex

…………………………………..Just sharing.. for what it is worth.