Thanks-giving

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The other day I wrote a post on giving thanks in all things over on my author site.  It was based around 1 Thessalonians 5:18, where, as followers of Jesus Christ, we are admonished to rejoice always, pray without ceasing, and in all things – to give thanks.

You have Parkinson’s. Someone you know has Parkinson’s. You have a chronic illness other than Parkinson’s. You have gout. You have a chronic illness and gout and a friend with Parkinson’s and you can’t find the TV remote and you’re supposed to give thanks?

Sure. Right after you eat the last two Oreos because after all, you have  a little milk left and studies have shown (studies I conducted personally or with a group) Oreos have been proven to help you feel better. But you gotta have milk…

There are just some things in life that are hard to give thanks for. But, it doesn’t say give thanks for everything, it says, give thanks in everything. And there is a difference.

Giving thanks for all things, is an act of gratitude, of “thanks-giving” upon recognition of a gift having been given to you. Giving thanks in all things con notates situations and circumstances. Is it possible to be in the throws of say, Parkinson’s disease or some other chronic or terminal illness? I believe so. Is it possible to be able to give thanks in the midst of some battle while not being able to give thanks for it? I know so.

You, undoubtedly, have read that people have actually been able to see the blessings that God has brought about through their illness or disease. And they have gone on to use those blessings as opportunities to bless others who are going through similar circumstances. There is no one more qualified to comfort the hurting except the one who has already been there, done that. There is no one who can understand better that pain, confusion, sorrow, and grief. And there is no one better to help get through the grief than the one who has already experienced grief itself. 

How do you give thanks in all things? I believe it takes knowing the One on whose ears the thanksgiving will rest. The One who is at work to bring together everything that happens to us – good and bad – for our good. He doesn’t allow situations and circumstances in our life to defeat us, to beat us down, to cause us to grow weary. We may feel defeated, beat down, and weary, but those are feelings and our feelings are not always accurate. Sure we can grow weary and get beat down over what life serves up but the fact is – we are not defeated. God is a god of victories and He is fighting for us.

Giving thanks in all things constitutes believing that God has your best interest at heart. Believing that He is sovereign and in control, regardless of what is going on around you. It means believing that He is faithful and can be trusted. And if He is faithful and trustworthy, surely our response will be an attitude of thanksgiving because He knows what He’s doing and what He’s doing is taking the bad – diseases, illnesses, abuse, severed relationships and more – and he’s working through the circumstances to bring about good. Good meant for us. 

I believe that eventually, giving thanks in everything can lead to giving thanks for everything. Because you have trusted His faithfulness, and because you have rested in His sovereignty and you have seen the blessings from being broken yourself, then maybe – just maybe – you’ll be able to give thanks for everything.

 

 

 

Clinical Trials Opportunity

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A couple weeks back, I was invited to consider becoming a ‘Clinical Trials Ambassador’ for a brand new entity known as… 


CureClick is a community-powered platform that revolutionizes the way companies find volunteers for their clinical trials. CureClick leverages WEGO Health’s 100,000-member network of health influencers to disseminate trial information to thousands of health communities — effectively reaching millions of patients at lightning-speed through trusted channels.

 

Founded by Fabio Gratton  (CureClick’s Chief Executive Officer), Cure Click’s mission is to assist in “accelerating the progress of medical advancements by increasing the speed with which clinical trials are completed.” Their mission also serves to “leverage the power of crowdsourcing, to share clinical trial information, and connect patients with relevant treatment options.”

Acccording to Brian Poeschl, CureClick’s Chief Operating Officer,  there are almost 150,000 current ongoing studies in over 187 countries. Out of those studies, 66% fail to recruit people needed to make that study accurate or happen at all. Over two-thirds of research sites fail to meet their original enrollment for a given trial. This, he says, slows down medical progress.

When a clinical study is in progress, it is critial to focus on the patient’s finishing that trial because “the continued develpment of innovative treatments is totally dependent on the ability of research organizations to rigorously test and validate their work.”

So, why do some studies fail to recruit, not finish, get slowed down? There are two key reasons: awareness and fear.

Awareness is critical as it leads to recruitment. For example, 16% of cancer patients are aware that trials are available, while only 43% of those that know actually participate while the other 57% do not.

Fear is the other reason that makes recruitment difficult. Fear of the new treatment not being as good ranks highest but fear of side effects from the study also ranks high on the fear list when it comes to contemplating being a part of a clinical trial. Some fear they won’t meet the acceptance criteria, they have a fear of a potential placebo, fear as to whether their insurance company will cover expenses, and they worry about having to relocate away from their families.

Cure Click wants to eliminate that fear and raise awareness in order that participants in clinical trials can play a more active role in their own health care, gain access to new research treatments before they are widely available, and help others by contributing to medical research.

After reading their informational material and going through an educational program for training on how to get the word out, I decided I was on the same page as they were: having the desire to raise awareness for studies that are available and pertinent to the Parkinson’s community (in my case) and hopefully dispel any fear any of us face when it comes to considering participating in a clinical trial.

So, all to say – I will now and again, be posting news about available studies through my website and Facebook groups when the opportunity arises. I will not be strict with publishing information about Parkinson’s specifically, but will filter through what comes down the pipeline for other conditions that can often go hand in hand with PD as well (such as dystonia, restless leg syndrome, dementia, etc).

If you’d like more information as to why I have taken on this ‘role’, you can click here to read more: My Relationship to Cure Click.

If you have any questions, feel free to email me at  parkinsonsjourney@gmail.com  .

Journeying with you,

Shrri

Coming to the End of ME

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“This past year I could feel myself slipping away. Tormented by daily how’s it going to happen, when’s it going to happen  and what’s it going to look like (in terms of my having Young Onset Parkinson’s disease). It can feel all-consuming. Add the natural element of depression that you get for free when you have PD and you’ve got the beginnings of a devouring darkness that vies for your joy, your hope, your soul, your very being.Light_in_the_Darkness.JPG

Because you are in the wrong frame of mind to hear the Truth but the right frame of mind to sink deeper into an endless hole of hopelessness, you dwell on the lies you believe – those others have spoken to or about you and those you tell yourself. You believe these lies above what you know is Truth because they can be louder. You run through your checklist of disappointments that you’ve been not only to yourself, but to others as well. Disappointments of the should-haves, the could-haves, the would-haves. Regrets and failures.

You are so covered by darkness at this point you can’t hear the Truth. You can’t see the Truth. You’re not sure if you even know the Truth.”

I started  a post yesterday with the words above but it went in a direction different than what I had  thought. Now I am drawn back writing out the post I was thinking about to begin with   – that of not being sure if I could hear or see or even know the truth in the midst of the darkness I seemed to be enslaved in.

My main struggle seemed to be with my disease. I had a rough beginning to my year when I not only realized but had to accept the fact that the neurologist I had, who  had also become a friend, would not be able to continue as my doctor. Ten years under his care. 60 to 90 minute appointments averaging every three to four months over those ten years, two surgeries, and visits that felt more like two friends having tea and cookies  than being  injected  with Botox for stiffness  and pain 10-15 times  per  visit.

I didn’t want to start over. He knew me. He diagnosed me correctly. Told me I didn’t have Lupus (yea!) but had Young Onset Parkinson’s disease (oh boy!). Told me he’d be with me ’til the very end…

But our end looked different than I expected. I pictured me ushered into my last visit with him in the confines of a wheel chair, drooling all over myself, slumped over, nodding yes because I can no longer control the tremors with medications or a zap from the wiring in my brain.. Because of my deteriorating state,, people go about thinking I am  so friendly and always waving at them (tremors of the arms and hands) and so agreeable because I’m always nodding yes (tremors of the head, neck, face).

That’s not how it was a year ago. A year ago I began to think this was becoming a burden. The medical bills, the distance,  the drive.

Then I attended a conference where my doctor was speaking and found out he had been  deathly ill and was fighting a  diagnosis  of his own . The next month I went to my regular scheduled appointment and he looked worse than the month before. After my appointment he was admitted back into the hospital for the fifth time in six months and followed up with a three to six month sabbatical to get well. While he was trying to recover, I was sinking further into darkness.

Why was it so hard to let go?

I asked myself that question constantly. Was it because he had become more than the kind of doctor this world seems to be overflowing with – ones that have lost sight of the patient and have turned to production and pushing papers? Was it because he had become a friend? Was it because he really did know me so well? Was it because when he said he’d be there through my first brain surgery he really was (even though he didn’t need to be)? Was it because when they’d wake me to test the placement of the wire, he was right there by my side, holding onto my hand? Was it because I wanted him to be part of the how’s it going to happen, when’s it going to happen and what’s it going to look like – you know – till the end, like he said? Like I pictured?

I was going to be that little old, agreeable, friendly lady in the wheel chair, not the patient who worried about her doctor who was fighting a battle all his own. While my prayers increased on his behalf, so did my anxiety. I knew things weren’t getting better with me physically and knew my medications or my DBS (Deep Brain Stimulation) unit needed adjusting – at least. I had to let go.

I made the call I had put off for too long in hopes of getting my way and made an appointment with a highly recommended neurologist/Movement Disorder Specialist  in Eugene – only three and a half hours north. A much shorter distance than driving from Southern Oregon to Phoenix or flying to Minneapolis and back.

My first visit was hard. Nothing unfamiliar as far as testing and questions. But it was a reminder of what I had lost.

My doctor.

It was nearing the end of the appointment when my new doctor began to check the settings on my DBS unit. Something wasn’t registering correctly and eventually I was sent for an x-ray where it was discovered the first DBS wire had somehow been broken. 

While that fix-it surgery was harder on me than the first two surgeries, it affirmed in me the fact that God is in control and knows what’s best and… I am stubborn.

I seem to hold on for far too long that which God is trying to pry loose from the clutches of my fingers. I sometimes felt like a kicking, screaming child wanting it my way. Who was going to be there until the end?

I will.

Who was going to be part of the how’s it going to happen, where’s it going to happen, what’s it going to look like  and who was going to know what to do  about it?

I heard it again…

I will.

I sat in the  doctor’s   office   and a peace came over me  and a light began to fill the darkness as  I waited for confirmation that the DBS unit was  now in right, working order.   The doctor made adjustments that day, the following week, the week after that and in two days she’ll adjust again. And I will be there. Not because those weekly trips are actually doable, but because I have learned this year – again – that God is in control and has His best in mind  for me, even though I can be stubborn. When I let go, He is free to work.

I haven’t felt this good in probably two or three  years. The other day I was speaking to a couple and the conversation led to my having PD. The gentleman said his father had PD. “He didn’t get it until the age of 62,” he said, “but he lived ’til 92 and it was only the last two to three years that were really bad from the PD.”

That’s not everyone’s experience, but that not a ‘bad’ experience (‘bad’ being relative).

I don’t know what my end will be like, when it’s going to happen, or if I’ll be harassing my caregivers from the throne of my bed or the confines of my nursing home wheelchair but I do know who’s going to be there with me – through it all.

He will.

Just for A Laugh

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The following quotes were taken from Electronic Medical Records dictated by physicians. They appeared in a column written by Richard Lederer, Ph.D., for the Journal of Court Reporting. Enjoy and, it’s okay to laugh outloud. It’s good for you!!! -sherri

She has had no rigors or shaking chills, but her husband states she was very hot in bed last night

The patient has no past history of suicides

The patient refused an autopsy

The patient states there is a burning pain in his penis which goes to his feet.

She slipped on the ice and apparently her legs went in separate directions in early December

Patient was released to outpatient department without dressing. I have suggested that he loosen his pants before standing, and then, when he stands with the help of his wife, they should fall to the floor.

Healthy appearing decrepit 69 year-old male, mentally alert but forgetful

By the time he was admitted, his rapid heart had stopped, and he was feeling better.

Patient has left his white blood cells at another hospital

The patient experienced sudden onset of severe shortness of breath with a picture of acute pulmonary edema at home while having sex which gradually deteriorated in the emergency room.

On the second day the knee was better and on the third day it had completely disappeared

Patient has chest pain if she lies on her left side for over a year.

The patient has been depressed ever since she began seeing me in 1983.

I will be happy to go into her GI system; she seems ready and anxious

The patient’s past medical history has been remarkably insignificant with only a 40 pound weight gain in the past three days.

The patient is tearful and crying constantly. She also appears to be depressed.

Discharge status: Alive but without permission. The patient will need disposition, and therefore we will get Dr. Blank to dispose of him

The patient expired on the floor uneventfully.

The patient left the hospital feeling much better except for her original complaints

Patient was becoming more demented with urinary frequency

A neighbour of a newly wed couple was worried when she didn’t hear her rather noisey neighbours for a while. A few days later, she peered through their letterbox and through the windows. But there was no sign of anyone. Concerned for the young couple, she called the police. The officers promptly broke down the door, then searched the house. Only to find the young women gagged and tied to the bed. Her husband was lying unconscious on the floor, wearing a Superman Outfit. They later explain that they had been engaged in a superhero role-playing fantasy, and the costumed husband had knocked himself out attempting to jump onto his wife from atop the dresser. Of course, the woman was unable to help him!