“I can’t Believe I Did That”

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Just looking back over my life… and what WE have accomplished:

My twin sister (my best friend) and I (and our parents) were guided by our older brother to discover the “Plan of Happiness” through the Church of Jesus Christ of Latter-Day-Saints.

“WE” learned to say “I” and gain our individual identities as daughters of a Heavenly Father which enabled us to move forward and have productive lives.

John (my other best friend) & I have been married for 51 years…planning for eternity. We raised ten wonderful children… who make us grateful each day for the time they shared with us, learning the joy of discovery, as well as the learning accomplished through trials and errors. They also are our best friends, along with their marriage partners.

And soon, now, our ‘baby girl’ [now a Mrs.] will be giving us our 23rd grandchild, their age ranging from 32 years to unborn. I have begun to write letters to each of them, in an attempt to keep connected thru the miles. I hope they will share ‘their memories’ with our great grandchildren.

We don’t have much, monetarily, to show for our lives as we transitioned through six different states. But we hope we have influenced lives for good as we were ‘professional parents’ for numerous special needs clients and transitioned to making friends of children and their parents as caregivers for our “Grandma’s Place Child Care” for fifteen years, prior to moving to Florida.

Also important through the years have been our extended family & Church family… many who have endeared themselves with us, either by serving us or allowing us the opportunity to serve them. Family are forever!

…I am also grateful for the 90+ followers of my blog … be ye PwP, caregivers of people with Parkinson’s or simply supporters of the quest for learning… I appreciate your support and words of encouragement.

I remember who’s daughter I am and I straighten my Crown!

Release of stem cells

I changed a page on the top of my blog to “What Worked” relating to a success story in my husband’s health challenge of years gone by. Feel free to read it. As he is experiencing a new challenge, I was pondering how the stem cells are in the bone marrow, I inquired about the possibility of trying the product again, to reverse his newly diagnosed condition.

THE RESPONSE I GOT TO MY INQUIRY WAS:

“Please keep in mind.  Everything in our bodies, from a single nerve cell to the tiniest tissue in an organ is a byproduct of stem cells.  There is nothing that a stem cell cannot reproduce.”

“And keep in mind – our product is not only for people suffering from various conditions.  It is also for people who want more vitality, more resilience, more enjoyment in life.  Their bodies may not have manifested a disease or disorder, but they may be stiff, their bodies may hurt, but they just write it up to “aging.”   The appearance of aging can be altered.  You can add years to your life and gain wisdom, but you don’t have to have aging symptoms!!”

The person also attached a testimonial booklet. I found it encouraging, but no more encouraging than our own personal family experiences. Besides my husband’s previous successful outcome, his oldest brother had seen the change in my husband and inquired, “What did he do?

We explained to him, how it had been explained to us, that the product encouraged a persons own body to release their own stem-cells which would go to the place in the persons own body where they were most needed. As his brother’s heart condition worsened, and medical specialist told him it was time to call his family together, his brother acquired his first bottle of the supplement. His brother said later, “I don’t ‘know’ that it is what made the difference, but I don’t dare not take it.” That brother is now 82 years young.

So now, I bet you are wondering… “If they got such great results… WHY haven’t I tried it, to see if I can document some improvements in my Parkinson’s symptoms?”

The truth? I do not know! But I plan to begin taking the product in January 2020.

I enrolled and placed my first order yesterday. If any person following my blog wold like to learn more about Stem Enhance, I am including a link to their site: https://JSR.cerule.com

I know I didn’t get ill over night, so I don’t expect immediate improvement, but I will report any lessening of symptoms as they come. Thinking positive thoughts.

Physician, heal thyself

A dear friend shared an experience with us: Max (such a knowledgeable, inspirational giant) was on the road as a guest speaker in a “Know Your Religion” series, when he experienced an acute attack of ‘Montezuma’s revenge’(or food poisoning.) An hour away from facing the horrible prospect of disappointing a huge room full of eager conference participants, Max said an impression came to him… ‘Physician, heal thyself’

Being a scriptorian, Max knew Luke 4:23 And he said unto them, Ye will surely say unto me this proverb, Physician, heal thyself: whatsoever we have heard done in Capernaum, do also here in thy country. BUT this was the first time he saw the need for applying it in his own life.

So… He PRAYED… for healing… and when Max rose from his knees, he miraculously was able to shower, shave and make it to the scheduled venue, feeling well.

I recalled his healing story as I saw a blog entry that said: ” As you approach the world of Fighting Parkinson’s Drug Free, remember the words of Dr. Zhi Gang Sha, “I have the power to heal myself. You have the power to heal yourself. Together we have the power to heal the world.”

My purpose here isn’t to say we should be able to pick up our beds and walk. I actually want to type about incontinence … ponder the following blog entry:

“……………….As PD progresses, you wake up one morning and have a new symptom. Sometimes symptoms lessen when a new one takes prominence.

Recently My bladder urgency changed for the worse when I unknowingly had a urinary track infection (UTI). Not to get too graphic, but I was buying incontinence products in vast quantities and using them frequently. The sheer number of accidents were overwhelming. And I was severely depressed about the situation.

Other PD symptoms paled as I faced a life in diapers. Fortunately the UTI cleared up AND I took action to tighten my pelvic muscles. There are home use machines that an individual can buy that help women tighten the muscles near the bladder. I took a chance on one, and I am very very happy with the outcome. I am beating my incontinence. The savings I have by not buying adult diapers will more than cover the cost of the device.

My attitude has changed from despair to quiet optimism.”

The point I wish to make is… although every person with Parkinson’s has evolving symptoms, not every Parkie will experience help with symptoms in the same way. Faith that Heavenly Father knows me, and how to enable me to grow from the experience gives me peace. Some people wish to tackle their symptoms drug free, while others feel compelled to seek relief following mainstream protocols. BUT I hope everyone is willing to take advantage of advancements in tools which may instill quiet optimism.

Involving my neighbors

I am fortunate to live in a community where neighbors actually know HOW to be good neighbors. We do not all attend the same church, but we all believe in the same God. My neighbors share the fruits of the harvest… and another shares his garage and tools, enabling my sweetheart to repair the brakes on another’s car out of the hot Florida sun and the afternoon rain storms. Our neighbors “have our backs”.

While we have been away from home during this past month (for the Parkinson’s clinical trial)… we felt comfortable knowing our neighbors and friends would provide care for our pets, and having been given access to our home, in our absence, some even opted to paint some of our walls, in a very professional manner… (asking permission first, of course.) 🙂

We have the absolute best HOA in the world. They ask for (an optional yearly fee of $35.) Some of the things I am aware of: They hold fund raisers, collect recyclables, loan tables, award scholarships to High school Seniors and have a monthly newsletter. We have not attended their meetings, because they are at the same time as our commitment for Temple service in Orlando. Despite our lack of participation, we continue to feel accepted and included.

When an outside evil crept in, breaking into cars, neighbors called to check on each other. And for the safety of all, they worked to have broken street lights repaired.

This week, I was invited to join with other women in our community for their Tuesday swim. They rotate, gathering at various pools each Tuesday. I needed to decline, 😦 because Tuesday happens to be the other day of the week John & I are regularly gone between 10 am and 6:30 pm.

BUT.. yesterday… I thought … perhaps we could find some of our neighbors who might be interested in meeting regularly on another day of the week to attend a Qigong class if I volunteered to lead it.

I tried Yoga, but I found the poses were to harsh for me. But this works for me. Take a look. AND try it.

Tai Chi Qigong Shibashi Set 1 – This qigong is one of the most popular in the world and is designed to balance qi flow. It is an effective and easy-to-learn routine which synchronizes gentle movements with deep breathing.

Do you think I will get any takers? The link below is a 24 minute routine I enjoy doing. The recommendation is to only learn three motions on the first time… and adding on three more in your next session. At that rate, it would require 6 sessions to learn the entire routine.

My Favorite Qigong so far

Beauty among the Struggles

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This thought was taken from a site with a goal of Marriage strengthening… But I loved the sentiment and thought it definitely applies to many of the varied struggles associated with Parkinson’s.

Perhaps you can help me build a list of Beautiful side effects of a trial: What follows are quotes I have taken from other posts on community chats: [I’ll include additional posts on beautiful side effects, because I don’t want to make the read too long.]

…………………………… Take every opportunity to do things that you want to accomplish now. I have traveled more and experienced more since my Parkinson’s diagnosis than before.

…………………………… As you can see I live with hope; having found a silver lining of sorts in my diagnosis. I have been given a ticket off the stress track of teaching and performing and now I nurture other talents the Lord has given to me. Through all of this, I have met so many wonderful and caring people

…………………………… We are pushed to make decisions………. Now, I want you to think about this – you can’t stay in Monopoly jail forever; by your 3rd turn, you must roll a double, pay £50, or use a “get out of jail” card. It’s one of those 3 options or you lose the game and forfeit all you’ve worked hard for. Similar rules apply in this game called life – we can’t remain within the confinements of anxiety, bitterness, jealousy, hurt, anger, fear, denial, betrayal, self pity… and expect to win. We will lose. A time must come, dare I say the time is now, when we must make the decision to exit whatever prison we find (or have put) ourselves in. That decision could take on different forms – it could be accepting that apology you never truly received and moving on from past hurts, it could be swallowing your pride and making that phone call, speaking out loud or remaining quiet, starting a new venture or ending an old one.

……………………………..Regarding Rock Steady Boxing……….. Most people in our class have never boxed before (non contact boxing by the way – hitting a bag, never a person!) There are people who come in with walkers, on riding scooters, even wheelchairs. Exercises are modified individually to each participant. The coaches are wonderful and the camaraderie with others who have PD is life changing.

………………………….. We become less vain. …..”Today I went over an invisible border. A week ago I made an inner decision: everyone can now see my tremor”. ………………………….. . Solving the puzzle. Worry about others, more than we worry about what people think of us

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…………………………………… If I had taken the diagnosis of PD for face value and approached it as something that was outside of my control, I would have never hopped back in the driver’s seat of my life

………………………………….. We are enabled to connect the dots….. “The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.” Ralph Waldo Emerson

 

 

 

Every Victory Counts

 You may want to go online to Davis Phinney Foundation for Parkinson’s and request the free manual ‘Every Victory Counts’ It is excellent and will greatly benefit anyone reading it. It is 400 pages long.  from Mr. Phinney’s intro:
“This race, a no-holds-barred winner-take-all type of event, demands everything from me. Let down my guard, and it’ll knock me flat – but by refusing to give in, by exercising daily, by eating well and most especially, by maintaining a positive attitude – I find ways to win.”

I’ve been browsing through posts on MyParkinsonsTeam.. an on line support group and social network. I have cut and pasted a few of the comments regarding attitude and patience that I found insightful.

ATTITUDE

“Good morning. I truly believe the best thing to do with the memory loss problem is to lighten up. All my friends and family know what to expect from my pd, so they are very patient with me. If I forget a word, I just call it “thingamagic” and go on with the conversation. I am bilingual, so if I recall the word in the other language, I’ll use it. Even my grandkids, who love to sit and talk with me, when I forget their names and call them “little girl”, they just say their name and go on like nothing happened. I am not trying to make light of anyone’s condition, but remember, it’s half illness, half attitude. The more you stress, the harder it gets. Have a blessed day. “

………………………….

“I read a lot , and I volunteer doing a computer job in which I have to keep my brain running normal . If you don’t use it you’ll loose it.”

………………………….

“I sometimes loose words but probably as often as any other 63 yr. old. What frustrates me is when I’m told by family and friends “ I just told you about that” or “ You already told me that”. I have a fairly high IQ so the loss of my short term memory really irks me. “

………………………..

“I just say,”uh oh Parkinson moment” and people accept that if you treat it as “Oh Well..”

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‘The only other answer for caregivers whose spouse/patient is experiencing this is patience. There are days that I don’t know how many times in 1 day the thought runs through my brain “It’s the disease not him.” That is what you have to constantly remember.’

………………………

“If you’re the person with the ‘memory fog’ then you don’t know what you’ve forgotten – that’s the scary part. I’m listening to Peter Gabriel ‘Don’t give up’ https://youtu.be/VjEq-r2agqc this gives me encouragement and a clue – learn a new song, learn all the words, sing along – learning something new utilizes the brain’s inherent abilities, and will sustain memory function … learn a new sequence of numbers (someones phone number! “

Positive over negative

I’ve been browsing through posts on MyParkinsonsTeam.. an on line support group and social network. I have cut and pasted a few of the positive comments that I found refreshing.

“For every problem the is some possible solution and for every negative there is a positive side…..always remember you are in control because only you can decide how to respond back…. remember too: NO PD or any disease can ever take that away from you! Do not let fear get in the way, do what you want to do now….I used to put off doing things because I felt they were too expensive, or I would want until I could find a better deal or wait until I am older and have more time—…NOT anymore, I got my priorities straightened out now and for that I thank God! I know for me, often I have to be down and out, and have fallen, which I often physical do -do-fall-just to see and remember to look up and see all I do have, and how blessed I truly am and that no PD nor any disease can take this away from me! 🙂 “

………………………..

“At the time the kids were 6 & 8 years old and it was kind of hard for them to understand, Now at ages 21 & 23 they have gotten something positive out Parkinson’s; How to care for people and lend a hand when someone needs help.  The other Positive thing it had on my life was it showed me how strong I am.  This is a Disease that I refuse to give in to.”

……………………… 

“Research for yourself to know about this and tell the Doctors, Because they learn from us also. Most of all,]I know it’s hard When living each day, Don’t make this Disease take all of all your life. I try to keep it in the farthest part of my brain and not have it in the front to were it’s who I am. I don’t wake up and say I have Parkinson’s and go thru my day and talk about it, I use to and would take me down and people pushed away. My kids say to me your amazing you never stop, Doing stuff. Get a hobby, I play Guitar at night and paint on canvas to relax and keep my movement going, Remember a body at rest, Stays at rest. Fight this Demon as much as you can and show who’s the Boss.”

AND I liked this next blog post from ‘My Super Power’

Anxiety is not always Negative  PARKINSONS- MY SUPER POWER·FRIDAY, MAY 10, 2019  This past week I attended a Parkinson’s meeting that was about “ Understanding Mental Health Complexities of Parkinson’s”.  Of course that wonderful mind of mine got into overdrive as I listened to the guest speaker talk about Anxiety, Apathy, and of course Depression. It all started with Anxiety. Sticking with previous articles and statements I have posted, that the human mind can think of 300 to 1000 words a minute and that 65% of these are negative, it seems the medical experts are no different in how they provide us with information.  How they present or say things to us usually make us think in the negative as well.

When I was first diagnosed my Neurologist suggested that medicine might improve my Quality of Life. When I asked him what was wrong with my quality of life at that time. He did not have an answer. Just that he thought the meds might be of help. However he did not know for sure. Yet that one thought, being implanted in my brain, could have caused me to doubt myself.  Anxiety , seems to be always shown as a negative. However Anxiety is just a means of how we respond and deal with stress. Stress can be caused by good or bad events that have or will happen to us. We can be just as stressed out on good things in our lives, as we can be about bad things!  Remember as children how excited and anxious we would be for Christmas and what Santa Claus would be bringing to us. That good anxiety would affect our sleep patterns and mood.  Looking forward to good things that are going to happen to us in the future IS ANXIETY! The reality however to us Parkies, is that our tremors or other Parkinson nuances don’t differentiate between the good or bad stress. Stress is stress and whether we are excited or not, our Parkinson’s will kick in. When that happens we start to over think. That overthinking can snow ball. It can create doubt. That doubt can lead to Apathy, and that Apathy can lead to Depression. Understanding that good stress can still activate our Parkinson’s however can be some what liberating to a degree and stop us from overthinking.  Any knowledge we can get of our opponent (Parkinson’s) can only help us in our battle. However being Positive over Negative while doing so, seems to me, to be Paramount!