Jun 20 2012

Polio Perspecvtive

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Polio Perspective – June, 2018

Millie Malone Lill, Editor        Wilma Hood, Publisher

In This Issue

Traveling With a Scooter

by Dennis Dorch 

Who Am I?

By Debbie Rollins DeMarco 

My Experiences With CBD Oil

by Steve Brown 

Marbles

 by Millie Malone Lill 

Web Corner 

Other Polio Newsletters 

A Little Bit of Humor

******************************************************

Traveling with a Scooter

By Dennis Dorch

June 21 at 11:43 AM

I have been asked to write about my experiences traveling in Costa Rica as part of an orchestra from the perspective of a polio person. I don’t want to make this a travelogue but rather highlight some of my personal challenges.

Two weeks ago I wrote of challenges I was facing for a trip to Costa Rica with my orchestra. Some thoughts now that I am here:

  1. San Juan is not disabled access friendly. To make the streets and sidewalks ADA would require a massive public infrastructure investment that this country may not be able to afford.

  2. The people of San Juan are amazingly helpful. Random strangers would come up to me to ask if I needed help to get out of a wheelchair, or if I needed help to cross a street.

  3. A trip like this becomes much more complex when one’s scooter stops working in the airport of Mexico City. The hotel we are staying in has loaned me a wheelchair for the week. This has made life more difficult, particularly getting out of the chair.

Today our group is going to a volcano and hot springs. Tomorrow is our first concert at the National Theater. 

I originally thought I would be racing around San Jose with my scooter, since Costa Rica has adopted ADA standards similar to the US. Unfortunately, the country has a long way to go. The photo below (photo left out) represents one of the better curb cuts/ramps in the city. The sidewalks have many pot holes, making navigation with a wheelchair or scooter difficult. 

On Tuesday our orchestra played at the National Theater. The staff made special arrangements for me to get on stage, since I was in a wheelchair (my scooter was non-functioning at the time). 

I was escorted through the front of the theater, and then through a side corridor that exited at the back of the stage (which was slightly raked, making walking a bit more of a challenge). 

The orchestra typically stands for acknowledgments. I don’t, since by the time I could stand, the orchestra would be seated again. It is a bit embarrassing to be the only one seated. Oh well I have come to the conclusion to not try and take my scooter onto the sidewalks and streets of San Jose. Too much heartbreak and disappointment.  I forgot to mention that cars have the right of way in Costa Rica.  Tomorrow we’re off to Sarchi for another concert.

Who Am I?

By Debbie Rollins DeMarco

I had polio in 1954 when I was 2 1/2. I was raised in a very small, rural, mostly agricultural town and I was the only person with any noticeable disability. (Total paralysis of the right arm, weakness in left arm.) When I was in high school I wrote this poem that I would like to share here. It’s not well written, but it is how I felt then.

Who Am I?
I like puppies and kids,
And lilacs in bloom.
Scary movies with popcorn,
And sleeping til noon.

I love the seasons
Autumn and Spring,
Hiking through woods,
And church bells that ring.

So why am I different,
As different can be?
It’s all because
I m disabled , you see.

People view me with pity,
Fear and distrust.
Worse is their hatred,
Repulsion, disgust.

They see me on the street
And they stop to stare.
Do they know how that hurts?
Or do they just not care?

I can’t change who I am,
Or was meant to be.
Does it really matter?
Can’t I just be me?

 

My Experiences With CBD Oil

by Steve Brown

HISTORY

  1. About November 2017 my biologist friend and I started a discussion about CBD Oil. We meet for a Timmy’s once a week.  (Editor’s note:  Timmy’s is a coffee shop in Canada.  Tim Horton’s)

  2. In the beginning of January 2018 I decided to begin my experiment. My first supply arrived the last week of January.  My CBD contains less than 1 % THC.

  3. I have an official diagnosis of post polio syndrome, arthritis, gout and functional dissociative neurological symptoms’.

The FDNS caused me to have very poor fine motor skills and a lack of awareness of my place in space.  I had a lot of difficulty walking from one floor type to the next, through a doorway or following a hallway that wasn’t straight.  Most of the time I held onto the wall to help me find my place in space.  These were the symptoms I was very interested in changing.

The arthritis and gout caused pain in my big toes, right knee, right elbow and right shoulder. I used Aleve morning and night together with over the counter Naproxen.  I added Extra Strength Tylenol as need to control pain.  I applied Extra Strength Voltarin morning and night.

  1. In less than a week after starting CBD my pain was all gone. My fine motor skills were drastically improved.

  2. In May I went to see a doctor at Natural Health Services and received my prescription for cannabis.

  3. I sleep more deeply and I sleep longer.

  4. I have a better disposition. My wife says I am happier – more even keeled.

  5. I have talked with many people for whom it has made a huge difference.

CBD

  1. I had a headache the first few days of using the oil. Apparently this is not unusual.

  2. CB1 CB2

CBD Oil works best when it has some THC to act as a catalyst.  My CBD has less than 1% THC.

cannabinoid type 1 receptor, often abbreviated as CB1, is a G protein-coupled cannabinoid receptor located in the central and peripheral nervous system. It is activated by the endocannabinoid neurotransmitters anandamide and 2-arachidonoylglycerol (2-AG); by plant cannabinoids, such as the compound THC, an active ingredient of the psychoactive drug cannabis; and by synthetic analogues of THC. CB1 and THC are deactivated by the phytocannabinoid tetrahydrocannabivarin (THCV)

 cannabinoid receptor type 2, abbreviated as CB2, is a G protein-coupled receptor from the cannabinoid receptor family that in humans is encoded by the CNR2gene.[5][6] It is closely related to the cannabinoid receptor type 1, which is largely responsible for the efficacy of endocannabinoid-mediated presynaptic-inhibition, the psychoactive properties of tetrahydrocannabinol, the active agent in cannabis, and other phytocannabinoids (plant cannabinoids).[5][7] The principal endogenous ligand for the CB2 receptor is 2-arachidonoylglycerol (2-AG

  1. Some prescription drugs work for everyone at the same dosage, many do not. The same is true here.

  2. Experiment with dosage; Go slow and go low. If you decide to use 6 drops a day, try taking three in the morning and three at night.

  3. It does not fix a damaged joint

  4. Fatique I am less tired but I still use my energy wisely.  I break projects into parts and do parts one at a time with a rest in between.  I lie down for a rest mornings and afternoons even if I don’t ‘need to’.  I can bring my pain back by over-extending myself.  I f I do too much today,  I will suffer tomorrow.  Sometimes it is worth the pain but I do the activity knowing and accepting the consequences.

8 It does not fix natural aging.

  1. Cannabis is one of the oldest crops known to mankind, with records of its cultivation dating back thousandsof years.

Today, it is widely accepted that marijuana has two main species: Cannabis indica and Cannabis sativa. Crossbreeding of indica and sativa strains has also led to a wide variety of hybrid strains.

Indica and sativa strains are thought to have different effects, and people often use them for different purposes.

Sativa

  • uplifting and energetic

  • cerebral, spacey or hallucinogenic

  • best suited for day use

Indica

  • relaxing and calming

  • body buzz or ‘couch lock’

  • best suited for night use

Indica strains tend to have an opposite effect. They provide a “couch lock” or body high that is well suited for nights when you just want to wind down and be in your own head. Indicas are often used to relieve stress and aid with sleep.

Generally speaking, indicas are best for physical ailments such as pain and inflammation, and sativas are best for mental conditions such as depression and ADHD. However, there are certainly exceptions based on the individual.

  1. It is not a miracle cure but for me to live without pain, to be able to control my hands and feet and to feel happier makes it worth the investment.

  2. Do lots of research and feel free to experiment.

  3. I see no evidence of addiction. I continue daily use because of the positive results but there is no compulsion.

Marbles

by Millie Malone Lill

I saw this meme on Facebook that said, “I may not have lost all my marbles, but there is definitely a hole in the sack.”  It got me thinking.  My own marbles seem to be diminishing in number, too.  I’m blaming it on age.  Yes, that’s it.  Over the years, I’ve accumulated so much knowledge and wisdom that I had to kick out a few marbles to make room for new information.  (I can hear you snickering over there!  Stop that!  It’s rude.)

How else would you explain the fact that I knowingly schedule so many things on my calendar that I am perpetually exhausted?  I do recall having had polio as a child, and it seems I dimly remember someone…was that me?…saying we need to Conserve to Preserve.  Yet, I glance at the desk calendar and I see that I have something going on every day this week. 

I have been an unofficial advocate for polio survivors for over 30 years.  I tell people to use their assistive devices, that they are only tools, to let people stare if that’s what they want to do.  What other people think of us is none of our business, right?  I know you’ve heard/read me say that many times.  Yet, I will still do more than I should myself.  I will still “forget” to load my power chair when I go to the store, telling myself that I can use the store scooter, or maybe I only need one or two things, so I can just walk.  Oh oh…I can hear that escaping marble rolling across the floor.

Why do I do that?  I no longer care if people stare at me in my chair, so it’s not that.  In fact, I like to be as visible as possible.  It keeps people from walking over me or reaching across me in the grocery stores, cutting ahead of me in a buffet line, stuff like that.  So it definitely is not vanity.  I’m just always in a hurry.  I think, “It takes so long to load an unload that chair.  I can walk that little bit.”  Yes, it does take about 3 minutes to get my chair loaded into or out of my van.  It takes a two hour nap to replace the energy I expend walking.  Wait!  That doesn’t compute.  Another marble rolls away.

I love little kids.  Yesterday, I was at a family wedding and saw my brother’s youngest great grandchild, Danny.  Danny is 8 months old, adorable and quite a chunk.  I love holding his sweet little self but yesterday, I caught that marble as it was headed for that hole in the sack.  Gotcha!  I didn’t pick Danny up, I talked to him while he was in his stroller.  We had a deep philosophical discussion as to whether or not I had taken his nose or if I had merely beeped it.  I expended practically no energy and in fact, I think the endorphins the baby giggles released were energizing.  Saved that marble.

Now that some of my marbles are gone, I have room for common sense.  Whether I’ll use it or not…the jury is still out.

 

WEB CORNER 

Not enough ZZZZs?

https://www.mda.org/quest/article/not-enough-zzzzzzs

Polio support group in Central TX

https://www.facebook.com/groups/1953181958049728/permalink/2089553914412531/

Hands free crutch:

https://www.facebook.com/InTheKnowPresentsAOL/videos/1862490770720088/

Insurgency remains hindrance to polio eradication

https://www.facebook.com/InTheKnowPresentsAOL/videos/1862490770720088/

All terrain wheelchair

https://www.facebook.com/InTheKnowInnovationAOL/videos/1876977179261603/

Twenty-six cases of polio in Congo

https://www.mediacongo.net/article-actualite-39373_vingt_six_cas_de_poliovirus_confirmes_en_rdc.html

Gavi board funds inactivated polio vaccine till 2020

http://polioeradication.org/news-post/gavi-board-funds-inactivated-poliovirus-vaccine-until-2020/

Dad creates 3D orthosis so his son can walk

https://www.facebook.com/ForGoodsSake/videos/1907004172925570/

Providers fight Minnesota’s cut to disability services

https://www.courthousenews.com/providers-fight-minnesotas-cut-to-disability-services/

Suspected polio occurrence not polio after all

https://twitter.com/michelzaffran/status/1007672307744111264

 

OTHER POLIO NEWSLETTERS

https://www.papolionetwork.org/

https://www.polioaustralia.org.au/

http://www.post-polio.org/

http://www.sunnyrollerblog.com/

http://polioepic.org/contact-us/newsletter/

http://snapsnv.org/

http://www.poliosurvivorsnetwork.org.uk/

 

A LITTLE BIT OF HUMOR

OBGYN, I couldn’t help but notice the “10 important questions and answers” document she had on her wall. As I started reading I also started laughing! Why? Check out these questions and answers!
Pregnancy and Women:
Frequently Asked Questions

Q: Should I have a baby after 35?
A: No, 35 children is enough.

Q: I’m two months pregnant now, when will my baby move?
A: With any luck, right after he finishes college.

Q: What is the most reliable method to determine baby’s sex?
A: Childbirth.

Q: My wife is five months pregnant and so moody that sometimes she’s borderline irrational.
A: So what’s your question?

Q: My childbirth instructor says it’s not pain I’ll feel during labor, but pressure. Is she right?
A: Yes, in the same way that a tornado might be called an air current.

Q: When is the best time to get an epidural?
A: Right after you find out you’re pregnant.

Q: Is there any reason I have to be in the delivery room while my wife is in labor?
A: Not unless the word ‘alimony’ means anything to you.

Q: Is there anything I should avoid while recovering from childbirth?
A: Yes, pregnancy.

Q: Do I have to have a baby shower?
A: Not if you change the baby’s diaper very quickly.

Q: Our baby was born last week. When will my wife begin to feel and act normal again?
A: When the kids are in college

7 Responses to “Polio Perspecvtive”

  1. Thomas Christian says:

    Ole better git a hearing ade?

  2. ruth says:

    thanks for this news letter. My sister is having the same feeling of when she had polio at 6. I am helping her learn what could be happening. thanks for this as the doctor is not talking about it.

  3. Millie Lill says:

    Ruth, read all you can online and I also suggest that you join one of the Facebook polio sites. You can learn a lot from those of us who have been there and done that.

  4. Hilary Boone says:

    Why do we still have so much hassle trying to get decent medical care. Sharing experiences really does help us realise ‘It’s not just me’ which slightly lessens the frustration and stress. Millie as usual you have done a great job.

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