What’s That Got to Do with My Occupation?

I’ve written about neuropathy, but what is this occupational therapy that may treat it? I know about physical therapy and have made use of it when necessary. Remember a few years ago when knee surgery was indicated? Physical therapy helped me avoid the surgery.

This time I was offered gabapentin for the neuropathy. That’s a drug usually used for epilepsy which can also help with neuropathy. I would explain how it works, but no one seems to know. I had two problems with this drug:

  1. Gabapentin became a controlled substance in England as of April of this year. England always seem to be one step ahead of the U.S. re medications.
  2. It is not suggested if you have kidney disease.

My other option was occupational therapy. That’s the one I chose. Let’s backtrack a bit for a definition of occupational therapy. Thank you to my old buddy (since college over 50 years ago) the Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/occupational%20therapy for the following definition.

“therapy based on engagement in meaningful activities of daily life (such as self-care skills, education, work, or social interaction) especially to enable or encourage participation in such activities despite impairments or limitations in physical or mental functioning”

That got me to wondering just how occupational therapy differed from physical therapy, the kind of therapy with which I was already familiar. I went to my old buddy again, but this time at https://www.merriam-webster.com/dictionary/physical%20therapy for any hints I could pick up from the definition for physical therapy.

“therapy for the preservation, enhancement, or restoration of movement and physical function impaired or threatened by disease, injury, or disability that utilizes therapeutic exercise, physical modalities (such as massage and electrotherapy), assistive devices, and patient education and training”

Made sense to me. Physical therapy was for the movement of the body, while occupational therapy was to help you carry out the tasks of your daily life. For example, it takes me longer to write a blog because my tingling, yet numb, fingers often slip into the spaces between the keys on the keyboard. Another example is that I now use a cane since I can’t tell if my tingling, yet numb, feet are flat on the floor as I walk.

Something I found interesting about occupational therapy is that it uses many forms of therapy that were once considered alternative medicine… like electrical energy. What’s that you say? You’d like an example?

Well, here you go. My therapist uses a machine called a Havimat. The following is from the National Stem Cell Institute at https://nsistemcell.com/hivamat-how-it-relieves-edema/  and explains what the Havimat can do and how.

“….The therapist connects an electronic lead to his/her wrist while the patient grasps a small cylinder grip. The vinyl gloves that the therapist wears prevents the circuit of electric current from closing, thus creating the ‘push-pull’ effect that penetrates deeply into tissues. Meanwhile, the patient’s experience is one of a pleasant, deep massage maintained by the therapist’s gentle pressure as he/she directs the deep oscillation.

…. The therapy “un-dams” trapped fluid. Tissues are decongested and edema is significantly reduced. This shrinks swelling in the area being treated. Hivamat has been shown to be exceptionally effective in relieving lymphedema when used by therapists to enhance manual lymphatic drainage.

…. Besides the reduction of edema, therapists use Hivamat for ridding tissues of toxins [Gail here: like chemotherapy.]  When used by a certified therapist during a manipulation technique known as manual lymphatic drainage, the therapy improves lymph fluid movement. This encourages better flow through the lymphatic system, which then carries away metabolic waste and toxins more quickly. Hivamat also promotes the production of lymphocytes, which improve the function of the immune system. [Gail here again: as CKD patients, our immune systems are compromised.]”

There is one thing, though. Apparently, the Havimat is NOT suggested if there is an active tumor. Uh-oh, I had three treatments with the Havimat before I uncovered that fact. I’ll have to speak with my therapist today and find out why she didn’t know that. But it is clear that using electrical energy as treatment is another case of what was formerly considered alternative medicine becoming mainstream medicine.

Topic switch. I’ve written about the American Association of Kidney Patients (AAKP), precision care, and clinical trials many times before. You’re probably already aware of the new initiative for patient care. AAKP wants your help in doing their part as far as patient experience with this survey.

“As part of AAKP’s National Strategy, we have expanded our

capacities to involve a far larger, and more representative, number

of patients in research opportunities and clinical trials. The

results of these research opportunities and clinical trials will help

create a clearer understanding of the patient experience and help

shape the future of kidney disease treatment and care. AAKP is

fully committed to changing the status quo of kidney care

and to better aligning treatment to personal aspirations.

To achieve this goal, the AAKP Center for Patient Research &

Education is working with top researchers to ensure that the

patient voice, patient preferences and patient perceptions are

heard.

AAKP is very pleased to partner with Northwestern University

and University of Pennsylvania on an important research

project organ donation.

Please consider taking part in this online survey and help

shape the future of kidney care for you and those yet to

be diagnosed.

Volunteers Needed for Research Study!

Researchers at Northwestern University and University of Penn-

sylvania invite kidney transplant candidates to participate

in a survey about your opinions of research done on donor

organs. Such research aims to help organs work better and

make more organs available for transplantation.

Your responses will help to improve the informed consent

process for transplant candidates.

You are eligible to participate if you:

•  Are 18+ years old

•  Speak English

•  Are currently a transplant candidate on the waitlist for only

    one organ

This anonymous survey is voluntary, and will take about 45

minutes of your time.

Your decision about participating will not affect your place on

the waiting list. Your participation may help improve the informed

consent process for transplant candidates.

Find out more information and take the survey by clicking

the link below [Gail here yet again: Don’t forget to click

control at the same time.]:

https://redcap.nubic.northwestern.edu/redcap/surveys/index.php?s=TEMXLDLF8A

Thank you to those taking part in the survey for helping

AAKP help those awaiting a transplant.

Until next week,

Keep living your life!

Double Whammy

Just as the flu was walking out the door, sinusitis walked in. No fair! Although, I must be feeling better because I’m starting to open all the doors and windows again.

I live in Arizona. We don’t have an actual winter, but we do have a flu season with all its accompanying ailments. Having a compromised immune system is not exactly a first choice, but I have Chronic Kidney Disease.

I know I need to slow down with this explanation. Good thinking. First off, what is the immune system? I went to NCBI, The National Center for Biotechnology Information at https://www.ncbi.nlm.nih.gov/books/NBK279364/ for an answer.

“The immune system (from the Latin word immunis, meaning: “free” or “untouched”) protects the body like a guardian from harmful influences from the environment and is essential for survival. It is made up of different organs, cells and proteins and aside from the nervous system, it is the most complex system that the human body has.

As long as our body’s system of defense is running smoothly, we do not notice the immune system. And yet, different groups of cells work together and form alliances against just about any pathogen (germ). But illness can occur if the performance of the immune system is compromised, if the pathogen is especially aggressive, or sometimes also if the body is confronted with a pathogen it has not come into contact before.”

Notice the word “compromised” in the last sentence. According to Dictionary.com at https://www.dictionary.com/browse/compromised, that means

“unable to function optimally, especially with regard to immune response, owing to underlying disease, harmful environmental exposure, or the side effects of a course of treatment.”

So when you have a compromised immune system, you are not receiving the full protection against germs that you could be receiving. Well, how does CKD affect the immune system?

My GFR (the numbers above the arc in the photo to the left and defined later in this blog) is usually between 49% and 59%. That means at any given time I’m missing quite a bit of the function normal kidneys would have. In other words, my kidneys are working more than twice as hard as those of someone without kidney disease. This is a fact that’s easy to forget now that I have the renal diet down pat … until I get sick… and it takes me longer to recuperate… or I slide right into another illness.

Let’s take a look at the jobs performed by the kidneys to see exactly why. This is what I wrote in SlowItDownCKD 2014:

“Your kidneys filter toxins and waste products from your blood.  They also regulate electrolyte levels and blood pressure and produce hormones, among their many jobs.”

Let’s say I eat some bad food. It would take me more than twice as long to recover and I could be more than twice as sick since my kidneys are compromised. Or maybe I actually took one of Bear’s medications instead of my own (which will never happen since they’re kept far, far from mine. This is just an example.) Same thing. I only have less than half the ability to remove a toxin from my body as someone with normal kidney function does. As for germs? You guessed it. My compromised immune system leaves me open to far more than I would be if I didn’t have CKD.

Now for sinusitius. I had that one covered in SlowItDownCKD 2013:

“The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/acute-sinusitis/symptoms-causes/syc-20351671 has this to say about acute sinusitis:

‘Acute sinusitis (acute rhinosinusitis) causes the cavities around your nasal passages (sinuses) to become inflamed and swollen. This interferes with drainage and causes mucus to build up.

With acute sinusitis, it may be difficult to breathe through your nose. The area around your eyes and face may feel swollen, and you may have throbbing facial pain or a headache.’

Before we get any more detailed here, a few reminders are in order {taken from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease’s Glossary}.

Acute – Extremely painful, severe or serious, quick onset, of short duration; the opposite of chronic.

Antibiotic – Medication used to treat infection.

Chronic – Long term, the opposite of acute.

GFR  – Glomerular filtration rate [if there is a lower case “e” before the term, it means estimated glomerular filtration rate] which determines both the stage of kidney disease and how well
the kidneys are functioning.”

Keeping it plain and simple, that just about covers my double whammy of sliding from the flu into sinusitis.

For those interested in KidneyX, this may be for you:

KidneyX: #RedesignDialysis Twitter Chat
The KidneyX: Redesign Dialysis prize challenge has a total prize purse of $2,625,000 and aims to accelerate the development and commercialization of next-generation dialysis products. Now through February 28, 2019, the KidneyX Redesign Dialysis competition will be accepting proposals for solutions or components of solutions that offer patients significant alternatives to dialysis as it is generally practiced today.
Innovators that are interested in applying for KidneyX: Redesign Dialysis are encouraged to participate in Twitter chat on January 24, 2019 from 1:00pm – 2:00pm EST.
Representatives from the U.S. Department of Health and Human Services and American Society of Nephrology will be available during the chat to answer your questions and provide more information about KidneyX, the Redesign Dialysis competition, and innovation in kidney care.. To participate and follow the chat, use the #RedesignDialysis hashtag.

For those of you who are caretakers for people with CKD, this may interest you:

Please join us on Wednesday, January 23 at 1 p.m. ET for an educational webinar titled: Taking Care of Yourself While Taking Care of Your Loved Ones – Coping Strategies for Kidney Patient Caregivers!
As a caregiver for a loved one with kidney disease, it is important to remember to take time for yourself. Hear from social worker Renee Bova-Collis, MSW, LCSW, and caregivers Brenda Vasser-Taylor and Ashley Martin … as they share coping strategies to help you take care of yourself so that you can support your loved ones.

 

Click here to Register!

 

After registering, you will receive a confirmation email with information on how to join the webinar. To call-in without connecting to a computer, use this #:

United States: +1 (562) 247-8422

You will be asked to enter the following Access Code: 399-056-972#

Audio PIN: Shown after joining the webinar

Until next week,

Keep living your life!