Is it Our Right to Die?

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Right to Die has been a sensitive subject and debated for decades. Some older folks like me  may remember names like the Hemlock Society and Dr. Jack  Kevorkian. It’s been considered taboo and carries a stigma.

People have debated the personal choices about their body for just as long—suicide, abortion, medications, dying, etc. Living with advanced MS, and aging, forces someone to think about the right to live or die for different reasons and in different ways.

An article  about Multiple Sclerosis and the Right to Die  was just posted by MultipleSclerosis.net, an online Health-Union community. Kudos to the writer and the administration for allowing this article to be shared. The article explains Right to Die from the perspective of an MS patient, whose quality of life becomes severely diminished due to pain and other physical, mental, and emotional limitations.

Add in self-dignity and humility. I have been traumatized too many times to count from the loss of my bladder and bowels in public. Even when hospitalized, having a nurse clean up after an accident in bed is humiliating. I could write another book on this subject alone.

Many comments were quickly added to support and share the words written. I added this partial comment in response to the article to point out other thought-provoking reasons:

I agree whole-heartedly with the comments made so far. I would like to add there are additional reasons a patient may desire assisted suicide beyond their (no) quality of life. It’s personal, but I feel compelled to share this.

I am currently involved in my 90-year-old mother’s dire health situation.  She fell In January, broke some ribs, and was erroneously given a pain med that caused an horrific adverse drug reaction with another med she was taking.  It left her in a condition requiring 24-hr. in-home care for two months.  Being the only sibling living in AZ, I recently arranged to transfer her to a senior care facility for her benefit and that of my 90-yr. old stepdad.  It’s a physical, emotional, mental, and financial nightmare for us all, and her future is not in her hands.  Last week, I sat down with my husband to say I don’t ever want to put him and my son through this.  While I’m too old to advocate for right to die, I plan on writing about it on my own.

It is heartbreaking, gut-wrenching when someone you love is telling you how terrible they feel and begging for help; and the only thing you can do is hold their hand and be there with them.  Yes, there is end-of-life care nowadays, but it isn’t always the best path for everyone.

Maybe it should be phrased, “The Right to Choose to Die”.

The Hemlock Society’s motto was “Good Life-Good Death”.  For some, yes; for too many others, no.

What is your reaction or thoughts about this?

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

Debbie Petrina
Author of Managing MS
Community Advocate for MultipleSclerosis.net 
www.DebbieMS.com

MS Awareness: Are We Shooting Ourselves in the Foot?

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March 29, 2022
5th week, MS Awareness Month

I let my hair down last night.  I posted a distressing message on social media.about MS Awareness Month.

I have just reached my 42nd year of living with MS, and I was in one of my distressing moods.

Throughout MS Awareness month, I guess I was irritated by the upbeat MS events, activities and stories I’ve been reading all month on numerous publications and MS platforms. I was tired of all the happy posts on social media, and wanted to express my real feelings at that time. It seems the same every year.

I get it that people with MS need lifted and this is an appropriate time to do just that. But why does it stop there?

Truth is, people need EDUCATED more about MS.  It sucks. It’s hard. And I’m tired of.  pretentious posts by people who glorify that that “MS” doesn’t define them. MSers are shown doing all kinds of wonderful things. “There are SO many treatments available now. Just pop a pill or get a shot.”  Inspiring, yet defeating. Are we shooting ourselves in the foot?

I want honestly. Realism.  Why aren’t there more innovative ways to help people UNDERSTAND the complications and implications of MS.  Display faces of distress and sadness instead of smiling ones. Why not show a list of things that cause financial impact–job loss; medications; bladder supplies;  equipment… Or of our losses–income. freedom, independence, social life, household limitations…

I was gratified that some online websites offered great MS education in March. MS Wellness Project has an excellent post about resources. The Rocky Mountain MS Center  has a free newsletter entitled “Painting the Picture of MS: How can we help the People Around Us Better Understand Multiple Sclerosis?”

There are one million people estimated in the U.S. (2.5 million worldwide) living with MS. However, when you count the people not living with it–friends, family, healthcare workers, employers, public service, strangers, etc.– the number dealing with MS is in the millions!  Helping everyone to understand MS helps those of us living with it.

Today is another day. It’s education time, one of my passions in life. If everyone dealing with MS educates just one stranger with MS, it’s an impact. There are strength in numbers.

Although MS Awareness Month is over, educating others about MS doesn’t have to be,

What do you think?

Debbie Petrina
Author of Managing MS
Community Advocate for MultipleSclerosis.net 
www.DebbieMS.com

 

March is National Reading Month

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March 21, 2022                                         

March is MS Awareness Month, but it is also National Reading Month. It was designated in honor of Dr. Seuss’ birthday to motivate everyone to read every day.

I learned this from reading Harvey MacKay’s weekly motivational column. He states that reading is key to education while fostering confidence and inspiration. Reading also has immediate and long-term health benefits, such as increased memory/cognitive function, empathy, and decreased levels of stress.

When you open a book, there’s always something to learn. I always think that if I learn just one thing that I can use the rest of my life, it is worth the cost. I have been an avid reader all my life, and wonder if that is the main reason that I don’t suffer from cognitive issues that affect over 50% of people living with MS.

Social media and online platforms are popular, easy go-to places to read about MS. But the mounds of information can be overwhelming, especially for people in the undiagnosed or newly-diagnosed stages. There’s something comforting about a good book sitting on a bookshelf for reference, especially if it is both educational and inspirational.

I have observed that conventional books about MS are not actively sought. Why not? One misconception is that because the world of MS is constantly changing, books about it would be obsolete the day they become published. However, anyone who would pick up an MS book would find that much content is extremely useful and not outdated.

Another misconception is that MS books that aren’t written by MD’s are not credible. But, there are great books written by people who have lived with MS for years who are valuable mentors for both medical and non-medical subjects.

I often look at it this way: I can choose between spending $20 for a lunch that’s over in an hour or so, or I can spend it on a book that lasts much longer. Either way, there is a wellness benefit.

Awareness of MS and reading books about MS are not mutually exclusive. Why not check one out today?

Debbie Petrina
Author of Managing MS
Community Advocate for MultipleSclerosis.net 
www.DebbieMS.com

 

 

What Do You Do All Day?

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March 15, 2022

My occupation is now “retired” after being on long-term disability for years.  Child rearing is over. From time to time, the question surfaces, “What do you do all day?”

Now that’s one of those questions that can be tricky to answer, like the question, “How do you feel?”  It depends on who’s asking and what mood you’re currently in.  It’s
a judgment call.

If it’s a casual acquaintance, I give them a few of the basics: I rest intermittently, exercise or swim, read, write, and volunteer when I can.  One of those subjects will usually switch the conversation toward another direction.  There is no sense in getting into the details of what a typical day is really like; it would probably make them uncomfortable, speechless, and sorry they asked.

Besides, everyone throughout their life has something of their own to deal with. Or, getting too specific about what I do can lead into unwanted conversation.  For example, there are the people who want to give advice about all kinds of things, which can get annoying if they really do not understand MS.  And then there are the “one-uppers”; who are more interested telling a personal story that is far worse than your situation.

But occasionally, someone asks me that question in a way with a certain tone that will get a rise out of me.  “So, what do you do all day?”   Even when I used a cane, then a walker, and now a wheelchair; I usually “look so good” and am smiling and perky.  I keep busy, rarely complaining.  It’s like they’re wondering why I got disability from the government or why I don’t want to go out somewhere.

Like most people with MS, I do things on my own as much as possible and strive to maintain independence. But that sometimes can backfire on me. It conveys a message that “I can do it; all is well…” Then if superwoman starts to fall apart, I’m asked “What’s wrong with you?”

We folks with MS endure invisible things like the fatigue, depression, numbness, and weakness that make life complicated.  It doesn’t matter whether we are in a wheelchair or not. We have kids and grandkids, chores to do, errands to run, households to maintain, finances to manage.  Life without a chronic illness is challenging enough.  Throw in MS and the time and energy it takes to do a task double or triples. Often, many things get done differently, partly, or not at all.

But how do you explain all this?  Should you try?  Do they really want to know?  If you think so, maybe take the opportunity to say, “not as much as I’d like, I can use some help.” Or is it easier to just say one thing, and then ask in return “What do you do all day?”

Again, it’s a judgement call.

Debbie Petrina
Author of Managing MS
Community Advocate for MultipleSclerosis.net 
www.DebbieMS.com

 

Living with MS is a B.I.T.C.H.

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March 8, 2022

There. I said it. I’m letting my hair down today. And I want to make everyone aware of it during this “March is MS Awareness Month”.

This post is easy to write, because I’m having a bad day.

Whether a diagnosed case of MS is mild, moderate, or advanced, living with it over time is

  • Baffling: by what is causing what; how long something will last; how bad will it                      get…
  • Interfering: with things I try to do, say, feel, think, see…
  • Thieving: of my job/finances, my time, my libido, self-esteem, dignity, abilities…
  • Controlling: of my decisions, my activities, my social life, my emotions
  • Humiliating: as I stumble, sway, lose control of my bladder/bowels, get                                        confused…

While there still is not a cure, I’m still hanging onto hope. Tomorrow is another day. Another chance that it will be an easier day.

P.S. I’m wearing my orange ribbon next to the blue/yellow ribbon (for Ukraine). It raises awareness, and questions.

 

Debbie Petrina
Author of Managing MS
Community Advocate for MultipleSclerosis.net 
www.DebbieMS.com

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March is MS Awareness Month

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March 1, 2022

GET INVOLVED!!

Do you have multiple sclerosis? Someone you know have MS? Involved with MS associations? Have MS patients in your profession?. YOU are needed to spread the word this month.

Too many people are still unaware of what life with MS is about. That’s because those of us living with it:

  • Have “invisible” symptoms, like fatigue, muscle weakness, impaired vision, neuropathy, cognitive difficulties…
  • Don’t frequently talk or complain about it for variety of reasons e.g., employment concerns, fear of upsetting family members…
  • Find it difficult to explain to others.

Once again, it’s important to take the opportunity to collectively increase MS awareness and understanding of it.

How?

  1. Read my MS Blog article that includes a quick summary of “What is MS” and pass it out.  https://blog.debbiems.com/?p=113
  2. Orange is the color that stands for MS. You can simply wear an orange ribbon every day on your lapel/shirt, in your hair, on your purse…or you can tie an orange ribbon on your car or put one on your house!
  3. Want to do more? Organize something as a team for an MS event coming up. Watch this fun video to see what we did at the Arizona Chapter of the National MS Society some years ago http://bit.ly/YJxleg .

You can start today just by sharing this post!

Debbie Petrina
Author of Managing MS
Community Advocate for MultipleSclerosis.net 
www.DebbieMS.com

 

How to Calm Anxiety (When You’re Freaking Out)

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While not specific to MS, the following website is filled with so many things to help with anxiety.

PLUS, SO MUCH MORE, for anything under the umbrella of well-being..

https://www.fingerprintforsuccess.com/blog/how-to-calm-anxiety/

Fingerprint for Success is a professional & personal development platform for individuals & teams to make amazing things happen in life and at work.

Be sure to check it out and share!

Debbie Petrina
Author of Managing MS
Community Advocate for MultipleSclerosis.net 
www.DebbieMS.com

 

Does Too Much Confusion or Noise Bother You?

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Throughout all my years living with MS, I never thought of this question as being related to this disorder. When I was younger, I just assumed it was the result of my chaotic life. As I got older, I attributed to just that—age. Not long ago, I read that noise and confusion may be bothersome to people with MS. But it’s not talked about very much, and I do read about MS actively in a number of sites.

Recently, my husband was grinding rock for hours in the backyard, and I thought I was going to flip out; the earplugs weren’t able to keep all the persistent noise out. Out of curiously, I went on the Reddit multiple sclerosis group and posted this:

“Does Too Much Confusion/Noise Bother You? These drives me nuts, especially if it’s loud and going on for a long time. I’ve been using earplugs a lot, or have to get away from it. I used to blame it on being an older age, but I’ve read that this is common in MS.”

 Go to the right place to get a good answer.

Wow—83 upvotes so far and 49 comments. That was just less than a day ago, and the comments are still coming in. I wasn’t alone, as I read “Yes!” after “Yes!!” after “Yes!!!”.

While the comments were coming in, I wanted to know more. So, I googled ‘noise sensitivity and MS’. VeryWell Health states This condition, called hyperacusis, can be among the subtle effects of MS. This sound sensitivity can interfere with your ability to concentrate, socialize, or even sleep. Symptoms related to hyperacusis may wax and wane. Hyperacusis can result from damage to parts of the brain from MS…

Long ago, I had reached the stage that I don’t automatically assume all my quirky problems are caused by MS. Boy, was I wrong this time. My continued search led me to a 2018 post by Healthline about what triggers sensory overload: When surrounded by too much noise, exposed to too many visual stimuli, or put in new or loud environments, many people with MS report experiencing confusion, fatigue, and pain. Sometimes, sensory overload is related to myoclonus, a stimulus-sensitive symptom that can cause involuntary jerking of muscles.

 

 What the Reddit group said.

 There was much more feedback than I anticipated. Specific, useful comments were made after most of the ‘yesses’:

“I didn’t know this was MS potentially! I can’t focus and get really overwhelmed/irritable with lots of noise around me. Light too. I just think I’m a cranky adult baby.”

 “Yes!  While I drive — so hard to concentrate on everything with MS brain. And I’m not that old, yet. Just turned 49.”

“Yes. When I go to the grocery store… the lights, the noise, tons of signs everywhere. My brain gets tired easily with the more it has to interpret.”

“Your description is spot on for me too.  I’m still trying to convince my neurologist that it’s an MS thing, they just said it’s tiring for everyone.”

 “YES!!! I used to think it was me being cranky…but if I have more than one stimulus, like someone talking to me plus (any of the following: TV or music or one of my kids trying to talk to me or phone rings or anything else you can think of!)”

 “Sure is a problem for me, and has been for a long time — at least since I was in my late 30s (I’m now 57). I carry earplugs with me at all times.”

 “Yes loud, loud noises or lots of layers of noise I find so very uncomfortable. Sensory overload is common but not spoken about much!”

“Consider getting tested for audiological (and visual) processing disorder and chat with OT about a full cognitive assessment. If you are in the workforce, you may need workplace accommodation for your disability. For my spouse everything changed after reading the audiology report. It’s been really helpful for me to have the written results to explain my issue to loved ones.”

 “Yes. I just got some noise cancelling headphones a month ago and they’re priceless. It made everything better and it made sure that my energy lasted longer.

 “Recently, I’ve gotten really jumpy. Like for instance I’ll be on the computer at work and someone will walk into my section of offices and I like jump out of my skin. I don’t know why, but that’s been really bothering me lately.”

“I too thought it was just me!!”

 “YES and YES! I had to give up driving. I also cannot sleep at night unless it is absolutely dark & quiet, so have to wear ear plugs & a night mask. I still have some insomnia nights where I am just too wired to sleep.”

“Yep. Some peoples’ sneezes feel like a grenade going off in my head. There’s a list of noises that cause me physical pain…

“Absolutely. I get incredibly frustrated and just want to jump out of my skin. I have asked to be moved to a different table in restaurants, I’ve left events or parties (sometimes I just need some time in a quiet spot, other times I just leave), I’m always asking my family to turn down the tv, etc. etc. I turn into a “rather not nice” if it is continuous with no escape.”

After reading the comments, I’m feeling ‘normal’.

Spreading the Word

Initially, I was beating myself up wondering, “Where have I been? Am I really that much out of touch?” But then I rationalized that VeryWell Health used the word “subtle”, and Healthline’s article also said that these things really aren’t talked about much. The specific, quick responses on the online Reddit group confirmed that this needs to brought out from under the rug.

What to do? Educate and communicate! It’s not all in our head, and there is a valid neurological explanation. Although we have to live with this and can’t prevent it, sharing information and solutions matter. I just put noise cancelling headphones on my shopping list.

If your doctors or others blow you off, show them this article. Being advised to reduce stress and fatigue may help, but it is easier said than done.

 

Debbie Petrina
Author of Managing MS
Community Advocate for MultipleSclerosis.net 
www.DebbieMS.com

New Release!

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Managing MS
A Roadmap to Navigate Multiple Sclerosis

It’s done! The second edition of my book Managing MS is out, and I would love for you to read it. This edition is updated and enhanced—it’s amazing how much has changed and happened in ten years.

As in the past, my mission is to continue educating anyone dealing with MS in an easy, uncomplicated way. In addition to the apparent walking difficulties associated with MS, most people aren’t aware of the numerous invisible symptoms and stigmas that are part of the disorder. “What to know, what to do”, is all in one place.

This second edition has more information, resources and links for readers to reference throughout the book. People acquainted with an MSer will learn how to help them. Read what my friend Dave Bexfield, founder of www.ActiveMSers.org has to say:

“Debbie Petrina has managed to improve her no-nonsense, been-there-done-that guide to navigating the often, choppy waters of multiple sclerosis. For personal advice without the unnecessary puffery, it’s just what the doc ordered.”

If interested in a copy, here’s the link:  http://debbiems.com/orders_275.html  If you like it, please write a review on Amazon. or wherever you bought it. And then, spread the word to help others understand multiple sclerosis!

www.DebbieMS.com
Author/MS Consultant/Living with MS

Getting MS Stem Cells Internationally for MS Damage Repair

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                                         Dr. Louis Cona and Debbie Petrina

I did it! And would do it again.

After much research and living with this beastly disease for 39 years, I found the opportunity I had been waiting for and took it.  I am 64 years old, in perfect health, and probably would not see anything like this available in the United States for the rest of my life. And, it was not expensive relative to anything else out there for treatment that suited me.

I never took a disease modifying therapy/pain pill, practiced wellness (diet, sleep, exercise…) and am a paraplegic; though looking at my fit 105 lb. frame you would never think I had MS, or the other 10+ symptoms I have had to manage.

Where?

I went to DVC stem (https://www.dvcstem.com/ ) in the Cayman Islands, which stands for the Da Vinci Centre.  Though existing for over ten years, the clinical trial for MSers began only about one and a half years ago.  No, it is not considered a cure, but the purpose is to repair damage caused by MS and regain function. What makes them so special?

  • It is a pioneer and practice by Medical Director Dr. Louis A. Cona, a licensed physician and surgeon, who did transplants and general medicine for forty years. He has a General Medical Office on Grand Cayman in addition to the Da Vinci Centre.
  • They are one of the most highly regulated clinics in North America offering this type of expanded cellular treatment. fully licensed and inspected by the government of the Cayman Islands. As a British Overseas Territory, healthcare regulations are extremely strict, on par with the US, UK, and EU. The entire medical staff is fully registered and licensed, and the stem cell protocols are IRB reviewed and approved by a board in the United States.
  • DVC Stem is partnered with Vitro Biopharma, an award-winning medical laboratory located in Golden, Colorado, which is fully FDA registered. Cells are only sourced from American Association of Tissue Bank (AATB) certified suppliers of full term, ethically US donated human umbilical cords. The selection of these donated tissues is extremely regulated and strict. All of these cells are expanded using safe and standard protocols and are then flown overnight in sub-zero containers directly to the clinic for immediate treatment. To ensure maximum treatment effectiveness, the cells are expanded to as much as 300 million cells before being administered.  http://www.vitrobiopharma.com. There is no other country that has these standards.
  • DVC Stem uses cord tissue-derived mesenchymal stem cells sourced from US-donated, full term human umbilical cords. While other common sources of stem cells are fat tissue or bone marrow taken from the patient directly, there are many benefits to using cord tissue. Cord tissue-derived cells are essentially “new”, in their most primal state, free from the effects of aging or disease. Additionally, they are minimally invasive to the patient, without the need for any extractions, free from immune rejection, and have zero risk of transferring viruses or other communicable diseases.

The Procedure

  • Treatment consists of a two-day period including a 3-hr. IV transplant of 300M cord tissue-derived stem cells, as well as a variety of therapies designed to aid stem cell activation and potency (chiro, physiotherapy, acupuncture, lymphatic massage, etc).  I was delighted—no chemo, immune-system wipeouts, hospital stays!!!
  • To apply for the treatment, a phone consultation with Dr. Cona is arranged to discuss your specific case and candidacy for treatment in depth. He is very selective in approving potential patients.
  • After the consultation and acceptance by Dr. Cona, I was given two packets of information to be completed by me and my doctor, as well as a two-page list of current tests, labs, doctor visits, vitals… that needed to be performed. The purpose is to rule out any diseases, infections, illnesses etc. to prevent diverting the cells from repairing something else and not MS damage.  (It was maddening, but I thought it made so much sense.)
  • I researched everything I could think of, and personally talked with others who had actually gone to DVC for cells.  About 150 MSers went there over the past year and a half. Not one person has had bad side effects, and all showed different types of improvement in different ways.

Of special note is my personal assessment/professionalism of all staff, the sterility and comfort of the clinic.  Dr. Cona was personally with me when he did the three-hour infusion in all his sterile garb, and we talked non-stop the entire time.  He wants to know his patients, and at discharge, he said that I or my physicians should feel free to call him anytime.  He has been courted by other countries (Panama, China, India) to partner with him for knowledge and profit, but has declined all of them. His only interest is his patients’ well-being, not profit.

After returning home, follow-ups or “markers” of MRI’s etc. are requested to determine progress at various intervals.

My Progress

I put a list together of all of my MS symptoms, and have kept a journal since May 29, 2019 that was my IV date.  It has only been two weeks, and by June 12th here are some specifics from my journal:

May 29, day of infusion
Very bad headache, dizziness, light-headedness, foggy throughout evening. Trouble sleeping.  Symptoms all gone the next morning.

June 2
Overall, feel good.  More endurance, ability, time doing aquatic water therapy (one hour).  Clear head.  Feel stronger despite rigorous pace of travel and unpacking, etc after trip.

June 7
Continued as above. Today, balance seems improving.  Took Grizzly on his entire walk this morning without having to hold on to an armrest.  Spasticity seems to show improvement.  Less tremors and tightness, especially in the morning when I get up. Was able to do 9 push-ups on wall in pool.  Could not do this before.

June 9
Did 10 pushups on wall in pool. No nap today—just a 45-minute lay-down– very busy all day.  (yesterday was a high-anxiety day/ 112-degree day).

June 11
Spasticity definitely improved:  longer stretches between baclofen pills (3 instead of 6 pills/day), easy to get catheter in, sometimes start to pee without catheter.  Balance getting better–washed hair with both hands and am able to do many things without needing to hold on with one hand for support.  Feeling stronger—did 12 pushups on side of pool. Seems easier to move legs around and up, though I still can’t do it on my own.  Only lower back pain now.   I can hold a pen more securely and write better. Bowels still messed up. (Note: this is happening on a day following 3 days of high anxiety/stress and excessive near the triple digits.)

June 12th
Today is a “pay day”.  I have been pushing too hard and the heat/anxiety was overwhelming.  I’m going to listen to my body and just rest and sleep.

To learn more about the DVC stem cell treatments, I recommend visiting https://www.dvcstem.com/.

Additionally, here is a link to an article put together on how stem cells are used to treat the symptoms of MS: https://www.dvcstem.com/articles/stem-cells-for-ms/, and an article about David Lyons, founder of the MS Fitness Challenge: https://www.dvcstem.com/articles/david-lyons-ms-fitness-challenge/. Being a member of David’s site enables persons to receive the stem treatment for $17,500. David went to Dr. Cona in Oct. 2018 with a leg that was dragging with a dropped foot.  He is now jogging!

Would I do it again? Absolutely! I had nothing to lose except my time and $22.5K for total fees and all travel expenses. It was safe with no side effects. At the date of this post, Pharmas offering treatments in the U.S. cost $50K-$70,000 annually for DMT’s (disease modifying therapies) for MS. They are only effective <50% of the time, have side effects, and require intensive follow-up that is exhausting. I was not desperate enough to consider the high risk of HSCT in U.S. clinical trials.

Stem Cell Update—January 20, 2022

Since my infusion, my neuropathy symptoms remain improved–less numbness, burning and stabbing sensations. Hand coordination, sensory and strength remain good e.g., can button buttons, grip a pen and write, feel objects in my purse, shuffle cards… (could not do any of these things for years prior to receiving the stem cells) Much less overall fatigue and more energy since the procedure. Cog functioning is very good except for forgetfulness, that is probably due to my age. No improvement in bowel/bladder functions, or ability to walk. Can stand, but only for long enough to pivot or do ten partial leg squats holding on with both hands. I have no doubt after all of this time that this stem cell procedure was successful for me.

Debbie Petrina
Author of Managing MS
MS Counselor/Living with MS 39 years.
http://debbiems.com/