All of Me, uh, Us

When I was a little girl, I liked to listen to my father whistle ‘All of Me,’ written by Marks and Simon in 1931 when Charlie, my father, was just 16. Only a few years later, it became a sort of love language for my mother and him. Enter a former husband of my own and my children. When my folks visited from Florida and my then husband’s side of the family journeyed over to Staten Island from Brooklyn to visit them, they all sang the song with great emotion. (By then, Bell’s palsy had robbed my father of the ability to whistle.)

To this day, I start welling up when I hear that song. But then I started thinking about the lyrics:

“All of me
Why not take all of me?”

Suddenly, it popped. For us, those with chronic kidney disease, it should be:

“All of us

Why not take all of us?”

For research purposes. To “speed up health research breakthroughs.” For help in our lifetime. To spare future generations whatever it is we’re suffering… and not just for us, but for our children… and their children, too.

The National Institutes of Health has instituted a new research program for just that purpose, although it’s open to anyone in the U.S. over the age of 18 whether ill with any disease or perfectly healthy. While only English and Spanish are the languages they can accommodate at this time, they are adding other languages.

I’m going to devote most of the rest of this blog to them. By the way, I’m even more inclined to be in favor of this program because they launched on my first born’s birthdate: May 6. All of Us has its own inspiring welcome for you at https://launch.joinallofus.org/

This is how they explain who they are and what they intend to do:

“The goal is to advance precision medicine. Precision medicine is health care that is based on you as an individual. It takes into account factors like where you live, what you do, and your family health history. Precision medicine’s goal is to be able to tell people the best ways to stay healthy. If someone does get sick, precision medicine may help health care teams find the treatment that will work best.

To get there, we need one million or more people. Those who join will share information about their health over time. Researchers will study this data. What they learn could improve health for generations to come. Participants are our partners. We’ll share information back with them over time.”

You’ll be reading more about precision medicine, which I’ve written about before, in upcoming blogs. This is from All of Us’s website at https://www.joinallofus.org/en, as is most of the other information in today’s blog, and makes it easy to understand just what they are doing.

How It Works

Participants Share Data

Participants share health data online. This data includes health surveys and electronic health records. Participants also may be asked to share physical measurements and blood and urine samples.

Data Is Protected

Personal information, like your name, address, and other things that easily identify participants will be removed from all data. Samples—also without any names on them—are stored in a secure biobank.

Researchers Study Data

In the future, approved researchers will use this data to conduct studies. By finding patterns in the data, they may make the next big medical breakthroughs.

Participants Get Information

Participants will get information back about the data they provide, which may help them learn more about their health.

Researchers Share Discoveries

Research may help in many ways. It may help find the best ways for people to stay healthy. It may also help create better tests and find the treatments that will work best for different people.

I’m busy, too busy to take on even one more thing. Or so I thought. When I read the benefits of the program (above) and how easy it is to join (below), I realized I’m not too busy for this and it is another way to advocate for Chronic Kidney Disease awareness. So I joined and hope you will, too.

Benefits of Taking Part

Joining the All of Us Research Program has its benefits.

Our goal is for you to have a direct impact on cutting-edge research. By joining the program, you are helping researchers to learn more about different diseases and treatments.

Here are some of the benefits of participating in All of Us.

Better Information

We’re all human, but we’re not all the same. Often our differences—like age, ethnicity, lifestyle habits, or where we live—can reveal important insights about our health.

By participating in All of Us, you may learn more about your health than ever before. If you like, you can share this information with your health care provider.

Better Tools

The goal of the program is better health for all of us. We want to inspire researchers to create better tools to identify, prevent, and treat disease.

You may also learn how to use tools like mobile devices, cell phones and tablets, to encourage healthier habits.

Better Research

We expect the All of Us Research Program to be here for the long-term. As the program grows, the more features will be added. There’s no telling what we can discover. All thanks to participants like you.

Better Ideas

You’re our partner. And as such, you are invited to help guide All of Us. Share your ideas and let us know what works, and what doesn’t.

Oh, about joining:

Get Started – Sign Up

Here’s a quick overview of what you’ll need to do to join.

1

Create an Account

You will need to give an email address and password.

2

Fill in the Enrollment and Consent Forms

The process usually takes 18-30 minutes. If you leave the portal during the consent process, you will have to start again from the beginning.

3

Complete Surveys and More

Once you have given your consent, you will be asked to complete online health surveys. You may be asked to visit a partner center. There, you’ll be asked to provide blood and urine samples and have your physical measurements taken. We may also ask you to share data from wearables or other personal devices.

Before I leave you today, I have – what else? – a book give away. The reason? Just to share the joy that’s walked into my life lately. It’s easy to share the troubles; why not the joys? If you haven’t received one of my books in a giveaway before, all you have to do is be the first person to let me know you want this copy of SlowItDownCKD 2017.

 

I need to get back to that online health survey for All of Us now.

Until next week,

Keep living your life!

 

Published in: on May 21, 2018 at 10:38 am  Leave a Comment  
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Helping Where You Can

When my brothers made it public that they each had Parkinson’s’ Disease several years ago, I decided to see how I could help. They were being well taken care of by their wives and their medical teams, so they didn’t need my help. Maybe I could help others, I reasoned. So I began exploring ways I might be able to do that… and found one.

It was clear clinical trials with people of my heritage were being conducted and needed participants. It wasn’t clear what these studies entailed. They weren’t reader friendly enough for me to understand, but after multiple emails and phone calls asking for clarification, I finally understood. During the whole process, I kept thinking to myself that this was a wonderful way to help if only it were more accessible – meaning more easily understood.

A couple of weeks ago, Antidote Match approached me about carrying their widget on my blog roll. If you look at the bottom of the lists on the right side of the blog, you’ll see it in turquoise. Actually, I chose turquoise because you just can’t miss that color.

According to the National Institutes of Health (part of the U.S. Department of Health and Human Services) at https://www.nhlbi.nih.gov/studies/clinicaltrials/ :

Clinical trials are research studies that explore whether a medical strategy, treatment, or device is safe and effective for humans. These studies also may show which medical approaches work best for certain illnesses or groups of people. Clinical trials produce the best data available for health care decision making.

The purpose of clinical trials is research, so the studies follow strict scientific standards. These standards protect patients and help produce reliable study results.

Clinical trials are one of the final stages of a long and careful research process. The process often begins in a laboratory (lab), where scientists first develop and test new ideas.

If an approach seems promising, the next step may involve animal testing. This shows how the approach affects a living body and whether it’s harmful. However, an approach that works well in the lab or animals doesn’t always work well in people. Thus, research in humans is needed.

For safety purposes, clinical trials start with small groups of patients to find out whether a new approach causes any harm. In later phases of clinical trials, researchers learn more about the new approach’s risks and benefits.

A clinical trial may find that a new strategy, treatment, or device
• improves patient outcomes;
• offers no benefit; or
• causes unexpected harm

All of these results are important because they advance medical knowledge and help improve patient care.

Important, right? But why Antidote Match, you ask? That’s easy: because it’s easy. The information offered is in lay language, the common language you and I understand, rather than in medicalese. Maybe I should just let them present their own case.

Antidote Match™

Matching patients to trials in a completely new way
Antidote Match is the world’s smartest clinical trial matching tool, allowing patients to match to trials just by answering a few questions about their health.

Putting technology to work
We have taken on the massive job of structuring all publicly available clinical trial eligibility criteria so that it is machine-readable and searchable.

This means that for the first time, through a machine-learning algorithm that dynamically selects questions, patients can answer just a few questions to search through thousands of trials within a given therapeutic area in seconds and find one that’s right for them.

Patients receive trial information that is specific to their condition with clear contact information to get in touch with researchers.

Reaching patients where they are
Even the smartest search tool is only as good as the number of people who use it, so we’ve made our search tool available free of charge to patient communities, advocacy groups, and health portals. We’re proud to power clinical trial search on more than a hundred of these sites, reaching millions of patients per month where they are already looking for health information.

Translating scientific jargon
Our platform pulls information on all the trials listed on clinicaltrials.gov and presents it into a simple, patient-friendly design.

You (Gail here: this point is addressed to the ones conducting the clinical trial) then have the option to augment that content through our free tool, Antidote Bridge™, to include the details that are most important to patients – things like number of overnights, compensation, and procedures used. This additional information helps close the information gap between patients and researchers, which ultimately yields greater engagement with patients.

Here’s how Antidote Match works
1. Visit search engine → Patients visit either our website or one of the sites that host our search.
2. Enter condition → They enter the condition in which they’re interested, and begin answering the questions as they appear
3. Answer questions → As more questions are answered, the number of clinical trial matches reduces
4. Get in touch: When they’re ready, patients review their matches and can get in touch with the researchers running each study directly through our tool

A bit about Antidote
Antidote is a digital health company on a mission to accelerate the breakthroughs of new treatments by bridging the gap between medical research and the people who need them. We have commercial agreements with the majority of the top 25 pharmaceutical companies and CROs, and a partner network that is growing every day.

Antidote was launched as TrialReach in 2010 and rebranded to Antidote in 2016. We’re based in New York, NY and London, U.K. For more information, visit www.antidote.me or contact us at hello@antidote.me.

Try it from the blog roll. I did. I was going to include my results, but realized they wouldn’t be helpful since my address, age, sex, diseases, and conditions may be different from everyone else’s. One caveat: search for Chronic Renal Insufficiency or Chronic Renal Failure (whichever applies to you) rather than Chronic Kidney Disease.

On another note entirely: my local independently owned book store – Dog Eared Pages – in Phoenix has started carrying the SlowItDownCKD series. Currently, they have 2016 in stage. I had a wonderful time reading from my novel Portal in Time there last Thursday night and was more than pleasantly surprised at the number of CKD awareness contacts I made.
Until next week,
Keep living your life!

This Former Hippy Wannabe Likes HIPAA

Each day, I post a tidbit about, or relating to, Chronic Kidney Disease on SlowItDownCKD’s Facebook page. This is the quote from Renal and Urology News that I posted just a short while ago:

“Patients with stage 3 and 4 chronic kidney disease (CKD) who were managed by nephrology in addition to primary care experienced greater monitoring for progression and complications, according to a new study.”

My primary care physician is the one who caught my CKD in the first place and is very careful about monitoring its progress. My nephrologist is pleased with that and feels he only needs to see me once a year. The two of them work together well.

From the comments on that post, I realized this is not usual. One of my readers suggested it had to do with HIPPA, so I decided to look into that.

The California Department of Health Care Services (Weird, I know, but I liked their simple explanation.) at http://www.dhcs.ca.gov/formsandpubs/laws/hipaa/Pages/1.00WhatisHIPAA.aspx defined HIPPA and its purposes in the following way:

“HIPAA is the acronym for the Health Insurance Portability and Accountability Act that was passed by Congress in 1996. HIPAA does the following:

• Provides the ability to transfer and continue health insurance coverage for millions of American workers and their families when they change or lose their jobs;
• Reduces health care fraud and abuse;
• Mandates industry-wide standards for health care information on electronic billing and other processes; and
• Requires the protection and confidential handling of protected health information”

Got it. Let’s take a look at its last purpose. There is an infogram from HealthIT.gov at https://www.healthit.gov/sites/default/files/YourHealthInformationYourRights_Infographic-Web.pdf  which greatly clarifies the issue. On item on this infogram caught my eye:

“You hold the key to your health information and can send or have it sent to anyone you want. Only send your health information to someone you trust.”

I always send mine to one of my daughters and Bear… and my other doctors if they are not part of the hospital system most of my doctors belong to.

I stumbled across National Conference of State Legislatures at http://www.ncsl.org/research/health/hipaa-a-state-related-overview.aspx and learned more than I even knew existed about HIPAA. Take a look if you’d like more information. I finally tore myself away from the site to get back to writing the blog after following links for about an hour. It was fascinating, but not germane to today’s blog.

Okay, so sharing. In order to share the information from one doctor that my other doctors may not have, I simply fill out an Authorization to Release Medical Information form. A copy of this is kept in the originating doctor’s files. By the way, it is legal for the originating doctor to charge $.75/page for each page sent, but none of my doctors have ever done so.

I know, I know. What is this about doctors being part of the hospital system? What hospital system? When I first looked for a new physician since the one I had been using was so far away (Over the usual half-an-hour-to-get-anywhere-in-Arizona rule), I saw that my new PCP’s practice was affiliated with the local hospital and thought nothing of it.

Then Electronic Health Records came into widespread use at this hospital. Boom! Any doctor associated with that hospital – and that’s all but two of my myriad doctors – instantly had access to my health records. Wow, no more requesting hard copies of my health records from each doctor, making copies for all my other doctors, and then hand delivering or mailing them. No wonder I’m getting lazy; life is so much easier.

Back to HealthIt.gov for more about EHR. This time at https://www.healthit.gov/buzz-blog/electronic-health-and-medical-records/emr-vs-ehr-difference/:

“With fully functional EHRs, all members of the team have ready access to the latest information allowing for more coordinated, patient-centered care. With EHRs:

• The information gathered by the primary care provider tells the emergency department clinician about the patient’s life threatening allergy, so that care can be adjusted appropriately, even if the patient is unconscious.
• A patient can log on to his own record and see the trend of the lab results over the last year, which can help motivate him to take his medications and keep up with the lifestyle changes that have improved the numbers.
• The lab results run last week are already in the record to tell the specialist what she needs to know without running duplicate tests.
• The clinician’s notes from the patient’s hospital stay can help inform the discharge instructions and follow-up care and enable the patient to move from one care setting to another more smoothly.”

Did you notice the part about what a patient can do? With my patient portal, I can check my labs, ask questions, schedule an appointment, obtain information about medications, and spot trends in my labs. Lazy? Let’s make that even lazier. No more appointments for trivial questions, no more leaving phone messages, no more being on hold for too long. I find my care is quicker, more accessible to me, and – believe it or not – more easily understood since I am a visual, rather than an audial, person.

Kudos to American Association of Kidney Patients for postponing their National Patient Meeting in St. Petersburg from last weekend to this coming spring. The entire state of Florida was declared in a state of emergency by the governor due to the possible impact of Hurricane Irma. The very next day, AAKP acted to postpone placing the safety of its members over any monetary considerations. If I wasn’t proud to be a member before (and I was), I certainly am now.

Aha! That gives me five found days to separate The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 each into two separate books with indexes. I never was happy with the formatting of those two. I plan to reward myself after this project. How, you ask. By writing a book of short stories. I surmise that will be out next year sometime. Meanwhile, there’s always Portal in Time, a time travel romance. Geesh! Sometimes I wonder at all my plans.

Until next week,
Keep living your life!

Good Grief!

No, Charlie Brown, grief is not good. Grief is not good at all. My big brother, Alan Peckolick, died 10 days ago. You can read about him in lots of publications and I’ll even provide the links.* But you can’t read about him as my big brother in any of these.

Nowhere do they mention how Alan used our brother Paul’s accordion for sound effects as he told us scary stories when forced to babysit. Nowhere do they mention how this non- violent boy promptly tackled his friend to wash his face in snow after he caught the friend throwing a snowball at me, his little sister. Nowhere do they mention his being told to take Paul and me to his scout meeting and his doing it, inappropriate or not.

Six and a half years is a big age difference when you’re growing up. You sort of catch up as adults. We never did. We lived in different worlds. He was a giant in the art world. I was happy raising my little girls, acting, teaching, and writing on a less than giant scale. Nevertheless, he was my brother and I made sure we kept in touch.

As Jews, we sat shiva. That is the week long period of mourning for the first degree relatives of the deceased. At their loft in Manhattan where shiva was being observed, I met many members of his social circle who were surprised Alan had a brother and sister and who asked me to tell them anecdotes about growing up with him. They praised his art world, and rightly so. I praised the big brother as a child… and then a teenager. They were charmed by the Alan that was this age; I was charmed by the Alan they knew as an adult.

But I found myself grieving. It was not unexpected. I hurt all over, nothing specific, just a general aching… or was it my heart I felt aching? Wait a minute, what was happening to my kidneys throughout this process of grief?

The day he was taken off life support, I was at my lab having the usual quarterly blood draw. Alan and Jessica Weber, his wife, were in Connecticut where they have a country house and where the catastrophic fall that landed him on life support occurred; I was in Arizona. There was nothing I could do from afar and I knew I could trust Jessica to keep me informed. I thought keeping myself to my usual schedule would help me cope.

Except for the values in the next sentence, all my tests came back as low as they could while still being in the normal range. That had never happened before. While my GFR stayed stable, my BUN was at 30 (‘normal’ range is 8-25), Bun/Creatinine Ratio 29.1 (‘normal’ range is 10-28) and my glucose was 113 (‘normal’ range is 65-99). I was underwhelmed. I figured it was my brother’s situation making my body goes haywire. I still am.

PyschCentral at https://psychcentral.com/lib/your-health-and-grief/ offers the following explanation of how grief affects our bodies:
“…. At the death the brain ‘translates’ the stress of grief into a chemical reaction in the body. The pituitary gland located at the base of the brain is stimulated to produce a hormone called adrenocorticotrophin hormone (ACTH). This reaction is a “protective” one and in essence makes the body ready to do battle. The ACTH (from the pituitary gland) then travels to the adrenal gland, a gland at the top of the kidneys, which causes a chemical reaction which ultimately produces cortisone. As the cortisone level increases it causes the production of ACTH to level off.

What happens in the case of grief where the stress continues for many months? The cycle does not operate as it should. Because the stress is continuing, the production of ACTH is continuing thus causing the adrenal gland to produce more and more cortisone. The result is an abnormally high level of cortisone circulating in the blood sometimes exceeding ten to twenty times the normal levels.

A high level of cortisone is one of the things that causes our immune system (the system that normally fights off disease carrying bacteria fungi and viruses) to falter. The high level of cortisone affects yet another gland the thalamus which manufactures the white cells of our blood. With the thalamus not functioning properly, it cannot produce white cells that are effective. Those white cells normally locate and phagocytize (eat up) the invading germs, viral particles or even pre-cancerous cells. Thus with the white cells unable to function properly the individual is 100% more susceptible to the most common germs.”

Well, what is cortisol? As I mentioned in SlowItDownCKD 2016,
“Cortisol is a hormone that controls metabolism and helps the body react to stress, according to Endocrineweb. It affects the immune system and lowers inflammatory responses in the body.”

So our already compromised immune system is compromised even more compromised. Are we now at the mercy of our grief? Nothing that dramatic, folks.

 

We can up our vitamin D – with our nephrologist’s approval first, of course. As mentioned in the glossary of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease,
“Vitamin D: Regulates calcium and phosphorous blood levels as well as promoting bone formation, among other tasks – affects the immune system.”

We can up our NREM (non-rapid eye movement) sleep. I turned to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 for this information:
“WebMD tells us
During the deep stages of NREM sleep, the body repairs and regenerates tissues, builds bone and muscle, and appears to strengthen the immune system.”

My favorite deterrent to a further compromised immune system? Hugs. MedicalNewsToday at http://www.medicalnewstoday.com/articles/275795.phpat explains:
“Oxytocin has an anti-anxiety (anxiolytic) effect ….”

Less anxiety, less stress. That’s something that could be useful during times of grief. I didn’t have to clear this with my nephrologist, hugging is a way of life with my family and friends, and it somehow, magically, lessens the pain for a little while.

Until next week,

Keep living your life!

*The links to Alan’s obituaries:

http://www.huffingtonpost.com/entry/alan-peckolick-dead_us_5988ae58e4b0d7937388f5be
https://www.washingtonpost.com/local/obituaries/alan-peckolick-influential-designer-from-madison-avenue-to-hollywood-dies-at-76/2017/08/10/ea33134a-7dd7-11e7-9d08-b79f191668ed_story.html?utm_term=.d2b395bfa3c6

All Is Not Lost

Last week, I told you the good news about SlowItDownCKD 2015 being available in print and digital on Amazon.com. And last week, I told the bad news about yet another member of my family being stricken with Parkinson’s disease.SlowItDownCKD 2015 Book Cover (76x113)

I didn’t know much about the medication to ameliorate the symptoms of the disease, so that’s what I’m exploring this week. But… we need to go back a little bit to see what this myriad of symptoms consists of. Let’s start with a simple definition of Parkinson’s disease. We’ll call it PD, but remember that doesn’t mean peritoneal dialysis in this particular blog.

According to Consumer Health Digest at https://www.consumerhealthdigest.com/health-conditions/parkinsons-disease.html,

“Parkinson’s disease is a disorder of the nervous system that progresses with time. It primarily affects the movement of a person. It develops steadily typically beginning with a slight tremor in one hand. Aside from causing tremor that is the most well-known sign of the disease, it also usually causes stiffness or the slowing of movement. During the early stages, the face may show very little, or no expression at all and the arms may not swing when the affected individual walks. Speech can also become softer or slurred.”no expression

I do see most of these symptoms in the newly diagnosed member of my family.  (Anecdote to lighten this heavy blog: one of my brothers has the ‘no expression’ symptom. A young fellow snidely called him stone face. I quietly told him my brother has Parkinson’s and can’t smile. My brother laughed. I laughed. Finally, the young fellow laughed, too.) What else?

The Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/parkinsons-disease/basics/symptoms/CON-20028488 answered my question:

“Tremor. A tremor, or shaking, usually begins in a limb, often your hand or fingers. You may notice a back-and-forth rubbing of your thumb and forefinger, known as a pill-rolling tremor. One characteristic of Parkinson’s disease is a tremor of your hand when it is relaxed (at rest).

Slowed movement (bradykinesia). Over time, Parkinson’s disease may reduce your ability to move and slow your movement, making simple tasks difficult and time-consuming. Your steps may become shorter when you walk, or you may find it difficult to get out of a chair. Also, you may drag your feet as you try to walk, making it difficult to move.

Rigid muscles. Muscle stiffness may occur in any part of your body. The stiff muscles can limit your range of motion and cause you pain.

Impaired posture and balance. Your posture may become stooped, or you may have balance problems as a result of Parkinson’s disease.

Loss of automatic movements. In Parkinson’s disease, you may have a decreased ability to perform unconscious movements, including blinking, smiling or swinging your arms when you walk.

Speech changes. You may have speech problems as a result of Parkinson’s disease. You may speak softly, quickly, slur or hesitate before talking. Your speech may be more of a monotone rather than with the usual inflections.

micrographiaWriting changes. It may become hard to write, and your writing may appear small.”

Oh, I’d seen all of these in him. Maybe he should have taken his neurologist’s suggestion that he begin medication, but it hadn’t been explained very well. Actually, it hadn’t been explained at all. So what was it?

Oh, my, there are so many different medications listed depending upon your unique set of symptoms. The most common is a combination of L-dopa and carbidopa according to WebMD at http://www.webmd.com/parkinsons-disease/guide/drug-treatments.

“Levodopa (also called L-dopa) is the most commonly prescribed and most effective drug for controlling the symptoms of Parkinson’s disease, particularly bradykinesia  and rigidity.

Levodopa is transported to the nerve cells in the brain that produce dopamine. It is then converted into dopamine for the nerve cells to use as a neurotransmitter.

…carbidopa increases its effectiveness and prevents or lessens many of the side effects of levodopa, such as nauseavomiting, and occasional heart rhythm disturbances.”

Hey, wait a minute! Drugs.com at http://www.drugs.com/cdi/carbidopa-and-levodopa-suspension.html is emphatic that you tell your doctor if you have diabetes or kidney disease BEFORE this is prescribed for you. Ummmmm, we have CKD; that’s kidney disease… and many of us have diabetes which caused the CKD. There’s the same warning about kidney disease on the same site for carbidopa.

Last week, I discovered that if you have ESRD, you’ll more likely to develop Parkinson’s. This brings up more and more questions for me. My newly diagnosed with Parkinson’s family member doesn’t have CKD, but I do… and you do. What if we reach end stage? What if we develop Parkinson’s? You know what? That’s what the specialists are for.parkinsons-disease-info

Thank you to MichaelJFox.org for sharing the infogram above.

Looking at the medical treatments of a disease that’s fairly new to me, what I’ve realized is that your drug treatment has to be specifically tailored for you. You may have symptoms my loved one doesn’t; he may have symptoms you don’t. You may well tolerate a drug; he may need secondary drugs to counteract the side effects of the same drug. He may well tolerate a drug you just can’t without several secondary drugs to counteract the side effects.

When one of my brothers told me this is a complicated disease, I don’t think I realized just how complicated. I’m not a doctor as I keep repeating. I know when we need one, a specialist at that, and now is the time.

Does that mean lose hope? Of course not, drugs are only one type of treatment for Parkinson’s. There’s a whole new field of physical therapy especially for movement disorders. Most of these will cover:

Strengtheningpd ex

Flexibility

Balance

Gait Training

Transfer Training

I’ve been watching my loved one struggle to lift himself off the couch, navigate turns while walking, and keep his balance. It could be heart breaking if we didn’t know help is available. The program he’ll be attending is intensive, four weeks of four days a week. The retired teacher over here told him to think of it as school. Honestly, I don’t care how he thinks of it as long as he does it.

What is it

Well, it’s time to try out some of his until therapy starts exercises with him.IMG_1398

Until next week,

Keep living your life!

If Only It Had Been an April’s Fools Joke

I thought it was a mean April Fool’s joke, but it wasn’t. I thought I’d heard wrong, but I hadn’t. I thought this was a mistake, but it wasn’t. Both of my brothers have Parkinson’s Disease. Now another non-blood family member had just been diagnosed with the same disease… out of the blue, unexpectedly, seemingly impossibly.

PD – Parkinson’s Disease in this case, not to be confused with Peritoneal Dialysis – is not only a genetic driven disease, but sometimes an environmentally driven one. This relative had been in Viet Nam. This relative had had the job of patrolling the areas of the jungle that had been saturated with Agent Orange to defoliate for better visibility. He’d done that every 15 days for over a year. 45 years later, he’s been diagnosed with PD. A coincidence? Not according to his neurologist who immediately told him to file disability papers with the Veterans’ Administration based on this information.

agent orangeMy mind was tripping over itself trying to explain this all to you – and to me. I needed to know just what this Agent Orange was. Dictionary.com at http://www.dictionary.com/browse/agent-orange?s=t explained:

“a powerful herbicide and defoliant containing trace amounts of dioxin, a toxic impurity suspected of causing serious health problems, including cancer and genetic damage, in some persons exposed to it and birth defects in their offspring: used by U.S. armed forces during the Vietnam War to defoliate jungles.”

Dioxin? What’s that? It sounded familiar, but I couldn’t quite remember. I wanted a definition I could understand so I jumped right over to MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=15798.

“One of a number of poisonous petroleum-derived chemicals which are produced when herbicides (substances used for killing plants) are made or when plastics are burned. Dioxins are chemically dibenzo-p-dioxins….”

Poisonous. That made me wonder what this poison could do to a human body. This is the list of those possibilities I found on the Veterans’ Administration’s Agent Orange website at http://www.publichealth.va.gov/exposures/agentorange/conditions/index.asp

AL Amyloidosis, A rare disease caused when an abnormal protein, amyloid, enters tissues or organs

Chronic B-cell Leukemias, A type of cancer which affects white blood cellsdioxin

Chloracne (or similar acneform disease), A skin condition that occurs soon after exposure to chemicals and looks like common forms of   acne seen in teenagers.

Diabetes Mellitus Type 2 (Me here: Diabetes is the number one cause of CKD.), A disease characterized by high blood sugar levels resulting from the body’s inability to respond properly to the hormone insulin

Hodgkin’s Disease, A malignant lymphoma (cancer) characterized by progressive enlargement of the lymph nodes, liver, and spleen, and by progressive anemia

Ischemic Heart Disease, A disease characterized by a reduced supply of blood to the heart,  that leads to chest pain

Multiple Myeloma, A cancer of plasma cells, a type of white blood cell in bone marrow

Non-Hodgkin’s Lymphoma, A group of cancers that affect the lymph glands and other lymphatic tissue

tremorParkinson’s Disease (My bolding), A progressive disorder of the nervous system that affects muscle movement

Peripheral Neuropathy, Early-Onset, A nervous system condition that causes numbness, tingling, and motor weakness.

Porphyria Cutanea Tarda, A disorder characterized by liver dysfunction and by thinning and blistering of the skin in sun-exposed areas.

Prostate Cancer, Cancer of the prostate; one of the most common cancers among men

Respiratory Cancers (includes lung cancer), Cancers of the lung, larynx, trachea, and bronchus

Soft Tissue Sarcomas (other than osteosarcoma, chondrosarcoma, Kaposi’s sarcoma, or mesothelioma), A group of different types of cancers in body tissues such as muscle, fat, blood and lymph vessels, and connective tissuespd

My heart sank. But what of the Parkinson’s patient who also has Chronic Kidney Disease. How will the CKD be affected by the PD? We already know we, as CKD patients, can develop muscle weakness and tiredness due to our poorly filtered blood (We know you’re trying, damaged kidneys.). Parkinson’s does the same. I couldn’t even image being the victim of doubly weak muscles.

I found a number of scholarly studies on the effects of PD on those with CKD, but each site was of the purchase-the-study-if-you-want-to-read-it type. That was a bit too costly for me. I still needed more information though.

I discovered that renal disease does contribute to “excessive daytime sleepiness in PD patients” (http://www.ncbi.nlm.nih.gov/pubmed/21435111), although I was actually looking for PD effects on CKD. We’re already tired. Does this mean we’ll be even more tired should we develop PD?

banner-nihlogoReady to be shocked? Here we go: “ESRD is significantly associated with an increased risk of Parkinson’s disease. Close surveillance for Parkinson’s disease should be considered for patients with ESRD.” Oh great. As if we didn’t have enough to worry about. By the way, ESRD is end stage renal disease. Once again, the National Institutes of Health gave us this information. Take a look at the study’s abstract at http://www.ncbi.nlm.nih.gov/pubmed/24751820.

While not exactly on topic, I found this disturbing similarity between the two diseases:

“Frustratingly, for kidney failure patients, the routine laboratory tests are almost never abnormal, and only hint abnormality when the failure process has already begun.  In Parkinson’s disease, as in kidney failure, a ‘threshold’ of cells must be lost before one manifests symptoms.”

There’s more, much more, from The Center for Movement Disorder and Neurorestoration at http://movementdisorders.ufhealth.org/for-patients/movement-disorder-information/parkinsons-disease-information/

Now I’m beginning to wonder if the drugs for Parkinson’s exit the body through the kidneys, but I think that’s a topic for another blog. I also realize that having CKD may affect PD more than PD may affect CKD. Sometimes, I surprise myself with what I learn.SlowItDownCKD 2015 Book Cover (76x113)

On the other hand, I have some good news. Yay! SlowItDownCKD 2015 is now available in print form and the digital form has been updated somewhat. Click on the title to go right to Amazon. One of my readers tells me I get more editing done when I’m sick (Yep, I have the flu.) than at any other time. I believe she has a point there.What is it

Part 2

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Until next week,

Keep living your life!