DreaMS

by Kristie Salerno Kent

Kristie knew she wanted to be a star, even when she was just a little girl. Her mother encouraged her ambitions, and would pay along with Kristie's calling herself Wonder Woman.

Kristie went to college, worked hard, and studied the performing arts with diligence and exuberance. As she finished her formal education, she noticed an inconsistent weakness and unsteady walking. She prided herself on being able to hide this difference form those who might have encouraged her to see a doctor.

When her job became more challenging, her boss understood, and the entire staff was amenable to finding less difficult ways for her to continue working.

Despite her advancing weakness, Kristie is able to truly say that although the word DREAMS ends in MS, her dreams didn't. It's a delightful memoir of a talented young lady who realized goals she once thought would have to be sset aside. It's a realization that she shares with everyone.

This is a book you won't find at Amazon; it can be downloaded for free at Kristie's website, which is funded in part by one of the pharmaceuticals that markets medication for people with multiple sclerosis. Kristie has done a great deal of good as an advocate for people with multiple sclerosis, and for the public in gaining an awareness of what this chronic condition changes in a person's life, and in the lives around someone with MS.

Here's the link to find her website and download the book for free:
Dreams, the ebook

And, here's the link to hear a podcast and see a book trailer for the author's work
http://msstationbookclub.com/dreams/ 

Related articles

• Big multiple sclerosis breakthrough (eurekalert.org)
• Experiences of Multiple Sclerosis (msresearchcharity.wordpress.com)
• On World MS Day, Author Celebrates What People with MS Can Do (prweb.com)

Mindfulness Revisited!

The Mindful Monster

With clever photographs and carefully-chosen words Darcie Nuttall has written her second book in the mindfulness series. A small bear has imagined that the physical symptoms of worry and guilt are caused by a monster only he can see. In time, by making good choices, the bear lessens the size and pains of his invisible monster. Reading this story with a child gives teachers and parents opportunities to talk about the physical symptoms of stress and how they can be alleviated by making the right choices. Five Stars for Ms. Nuttall's creative use of mindfulness awareness.

The first book in the Mindfulness Series is Yipper and his Journey of Mindfulness. Here is a review I posted in November of that book:

Yipper and his Journey of Mindfulness is a new book for children, written by a new author, Darcie Nuttall. Ms. Nuttall is a licensed mental health counselor and her first book is written with calming phrases that repeat throughout the story.
     Darcie has included photographs of cuddly stuffed animals to add a visual component of reassurance and caring. The pace of the story and the frequency of illustration will help any adult reading to a child engage the child in discussion around the story.
     With gentle rhymes opening the story, and a reassuring adult dog accompanying Yipper on his journey, Nuttall takes the young pup on a physical journey and through the mother-dog's voice adds a nurturing component of emotional awareness.   
     By traveling safely with his mother, Yipper learns that fear will pass as he moves through whatever situation is causing it. And he learns to keep the memory of overcoming fear, as that will help him address fears as they arise.
     This is a very thoughtful and thought-provoking book, attractive both to children and to the adults who love and care for them. I'm looking forward to more stories of Yipper, and am sure they, too, will evoke helpful conversations between children and adults.
     Yipper and his Journey of Mindfulness is available at Amazon in print and in Kindle editions.

Related articles

• November local authors event (georgetownpl.org)
• Darcie Nuttall will be appearing again at the Georgetown Peabody Library to introduce the second book in her Mindfulness Series. Come to hear her presentation and participate in the question and answer session following on Wednesday, February 27, 2013 from 7 to 8 pm.

Reviewing by Indy Authors

I've received another Five Star review of my book, Multiple Sclerosis an Enigma. This is written by a fellow author, Philip Nork. Here's what he wrote:

Sept. 19, 2012

I just finished MultipleSclerosis, an Enigma by Terry Crawford Palardy and am sitting at my desk in a fog. This heart-felt memoir of a person diagnosed with MS and her battle to live a “normal” life has me re-thinking my own life.

The courage displayed, along with the confusion as to why, was portrayed brilliantly. As I read it, I felt like I was sitting with the author at a table or on a front porch, sharing a beverage, as she told me her story.

There were times I laughed and cried while in the pages of this book. It also took me back to the days when my grandparents were in the same situation … a different disease, but the same situations.

The author says, “Water doesn't try to choose a direction ... it just follows the water before it, rushing over the same rocks that were submerged in high water and exposed in drought last year, and ten years ago, and maybe fifty years ago. Nature is content to follow its established route. Only when man intervenes does the direction of the water have to change, finding and following new paths. Sometimes, the stream is strong enough to return to its own, natural path, to the dismay of those who had built in its original path.”

I take this to mean that nobody knows what is in store for them in this thing we call life. We can try to change the course of events by medicine or other things that the “professionals” prescribe, but the best things we can do is accept what fate delivers and deal with it in our own special way.

This book can help those diagnosed with diseases they don’t understand by letting them know they’re not alone. But at the same time, it can help those who are healthy by letting them into the “secret” life others may be in.

I am so glad I read this book.

Related articles

• Two More Five Star Reviews of Multiple Sclerosis an Enigma! (terrysthoughtsandthreads.blogspot.com)
• Indie Author Reviews (digitalebookformatting.wordpress.com)

Reputable Medical Websites

We have the internet at our fingertips. We have a medical condition that we know is a topic of some websites. Which sites do we choose? Which sites do we trust? And do we share with our doctors what we find online?

Today's internet users have to take ownership of their responsibility in assessing their travels through informational sites. This obligation remains whether one is seeking medical information, historical data, or current event coverage. Every website has a webmaster, an editor or program director who selects what will be uploaded to their page(s). All have their own agendas.There are plenty of search engines available to help you find a plethora of sites dealing with the topic you are researching: Bing, Google, Yahoo, and more. Innumerable data bases exist, and consumers must learn how to create a library of trust.

What are the keys to unlocking this treasure house of information? Begin with the url (the web address) and start at the end: most will end with .com, .org, .net, .gov, .edu here in the United States. Students are taught early to expect a .com site to be one sponsored by someone with an agenda, true or not, and .net as being like a co-op of users with a common interest. Urls with the suffix .org are most often linked with organizations like museums or other private institutions that have a reputation to maintain. Those with.gov are government sponsored which, depending on one's political outlook, may be a positive or a negative. And I learned soon enough as a teacher leading young adolescents through research projects online that the suffix .edu can be widely variable: .edu may mean it is hosted by a college publishing highly qualified, scholarly articles, or it may be a classroom site hosted by an elementary school and showcasing third grade student compositions with factual errors, neatly typed.

Medical issues are also addressed in a wide range of sites, and so may be no more reliable than one patient's personal journal, complete with singular bias, or a site filled with many chatters sharing their experiences and differing amongst each other in their replies. These sites may be both confusing and misleading to a person recently diagnosed just trying to 'get a handle' on the terminology and stages of a condition. Other websites may be owned and thus influenced by the large pharmaceutical companies producing and marketing specific solutions at great expense toward greater profits. Most medical information sites will responsibly remind readers to always check with their own doctors before accepting any advice or practices sponsored by the site.

I've learned a great deal about multiple sclerosis by reading at the National Institute of Health's site. I've also learned a lot of vocabulary, and gained second hand knowledge of many medications, at the NMSS message boards; I'm careful, though, to remind myself that they are personal stories that differ widely in viewpoint and in credibility.

Many doctors don't want to hear what you've learned at a website, reputable or not. They may be offended that in reading there you are less dependent on their professional knowledge. Yet they haven't the time to spend educating you about your condition at the level of detail that you may wish to be educated. Nor do they expect you to take medical courses at a university. This lack of professional information sharing within a doctor's tight schedule is what leads to patient frustration and reaching out to the internet for further information.

There are new sites appearing almost every day on every medical condition. Doctors haven't the time nor the interest in screening those sites for their patients. But they may have experience and knowledge of some sites that they believe are reputable, and it doesn't hurt to ask for a list that you can turn to when the doctor is not available.

The articles below are sites that I have found trustworthy, and have shared at my Facebook page for others looking for online resources. But I, too, must ask you to always check with your own medical team before choosing to follow a practice learned online.

And I'll remind you to go to my online store, or CreateSpace, or Smashwords, for a 50% discount on my book, Multiple Sclerosis, an Enigma. The links will be listed below the related articles.

Related articles

• Living with Depression in Older Adults by Laura Chapman at psycheguides.com
• Patients Like Me a site where patients share information about treatments, etc.
• National Institute of Health: Diagnostic tests for multiple sclerosis explained
•  NMSS Learn Online videos explaining diagnosis, treatments, and lifestyles with MS
• Multiple Sclerosis Foundation: Motivating, Educating, Empowering Since 1986
• Heat and People with Chronic Medical Conditions (cdc.gov)
• Vitamin D Association Univ. of California San Diego Scientific Conference videos 
• Medscape Today  Symptom Clusters in MS 
• Wego Health Activists site 
• "Our friend Julie" whose posts I often share at Facebook's MS an Enigma page.

 I'll post more this week on multiple sclerosis. It is an enigma: no one understands the cause and so their 'treatments' are all a shot in the dark (pardon the pun.) But I want to remind you that you can buy Multiple Sclerosis an Enigma for half price at my webstore this week. Getting it there guarantees that you will receive an autographed copy (personalized if you wish). It will also be half price at CreateSpace (with the discount code of Y8CV2CHT), and at Smashwords (their discount code is CZ73A)

Two More Five Star Reviews of Multiple Sclerosis an Enigma!

I'm happy to share two more reviews of my book; these are posted by readers at Smashwords.com. I want to acknowledge the assistance I had from Lucinda Campbell, a formatter who helps writers trying to meet the demands of Smashwords' premium style. Thank you, Lucinda. Your work was noted and appreciated in one of the following reviews!

Review by: Cat Mahoney on May 08, 2012 :
This story is a honest look inside the world of a multiple sclerosis patient and woman trying to adjust to the MonSter.It is a good beginner's guide about plotting through the world of auto immune diseases.

She is honest and refreshing sharing her thoughts with the readers and tells the pros and cons of this vague disease. She has a strong support system and knows how to advocate to the physicians for the treatment all ill individuals deserved.

I like the upbeat positive attitude she is developing along her journey to transform her life from a Type A personality to a mellow lady with I do not care attitude and lives for each day.

She was brave enough to put in the Almighty's hands and release herself from Western medication and looking for an better approach to deal with the symptoms of loss muscle and cognitive capabilities.

She explains how it affects her and her husband and the adjustments they made to learn how to dance and not be furious with a personal storm some of us experience everyday.

Kudos for sharing your experiences and trials with others who might of just received the news "You have MS". This is a good book to start to comes to terms with the diagnosis of any autoimmune condition.
(reviewed within a month of purchase) 

 

Review by: Dana Gagnon on April 27, 2012 :
In "MS: An Enigma," author Terry Palardy takes a reader along with her through the process of her MS diagnosis. This book, however, is not just for MS patients and their families, and it’s not just a list of medical tests. Readers will relate to many of the author’s experiences: childhood memories, combining work days with family and illness responsibilities, and caring for aging parents. Terry’s writing style is easy to follow, and the book is well-edited. I read the ebook edition, and was happy to find the pages well-formatted.

From the first chapter of the book, Terry is completely transparent with her readers, inviting them to share the emotion and frustration of the moment. She also shares the support she receives from her husband, Rick. The author does not separate descriptions of the illness and treatment from her daily life, and instead tells a story.

In this book, it’s clear that a diagnosis is not an event with a date that can be marked on the calendar, but rather a series of moments that begin early in life. Terry begins with moments in her childhood, and her writing is engaging as she creates in herself and her family complete characters for us to follow. Rather than simply list medical tests she was subjected to, she tells the story of how the test impacted her work day and how the constant interruptions affected her emotions. A careful description of her MRI experience will encourage anyone about to go through the same test.

Terry ends her story with a treatment experiment, and I hope she revises the book at some point to include her results. As the author is about the same age as my own mom, I was also looking for her experiences telling grown-up kids about her diagnosis and their reactions—but perhaps that is a story for them to write.

True to her academic roots, Terry ends the book with a section of reliable resources readers can turn to for information about multiple sclerosis, along with a list of online forums readers can go to for a community of encouragement.
(reviewed within a month of purchase)

I'm offering a coupon for a Discounted Download  (April 19 through 25th) Here's the information you'll need:

 Multiple Sclerosis, an Enigma http://www.smashwords.com/books/view/152332

Your coupon code for 50% off is TC78K

The print version remains discounted at Create Space: here is the information you'll need for that:

https://www.createspace.com/3711313 

and enter this discount code at the checkout: VXXURQMH

Please consider writing a review at Smashwords, Amazon, Goodreads or in an email to me - I would love to post the reviews here for others to read.

 Today's writing prompt: What five people would you invite to a dinner party, and why?

I have to expect that my immediate family (husband, daughter and companion, son and companion, and grandchildren) would already be at the table with me. And, we always set an extra place. So here are my six guests:

In that case, I would like to invite Hillary Clinton (accompanied by her husband, Bill), in order to thank her for her service to our country as Secretary  of State in such difficult  years.  

I would next want to invite Barack Obama and his wife, and two daughters. I would want to thank them for the decision to stay at the White House at great personal expense, and for the benefit their presence gives to the rest of America.

These six people are currently in the position to advocate for improved health care for all Americans, and are currently receiving top notch medical care for themselves. Their futures are assured by earned pensions, and their safety is in good hands with the secret service protection no matter where they are in the world. 

All six of them have every reason to want to sit together at the same table; I would love to have my family break bread and have a chance to talk freely with each of them.

As a teacher, I would want to engage the Obama daughters in a conversation about how they are developing their own social and political beliefs, and how the move to Washington may have affected those. My own grandchildren would no doubt have some comments to share about attending public high school in a state widely impacted by the economic decline.  

As a retired teacher whose pension was affected by a premature retirement caused by a diagnosis and treatment that weakened me both physically and emotionally, I would want both Hillary and Barack to hear my limited economic rewards for thirty years of dedicated, 'highly qualified' teaching. I would want my son to have a chance to explain to them that though he works more than forty hours through multiple positions as a highly skilled public servant he is not yet entitled to quality health insurance. I would want my daughter to have an opportunity to ask both of them how they are working to improve the long-term economic planning to benefit her children. I would want my husband to have a chance to point out that his years of unpaid elder care have limited his maximum earnings towards pension and social security benefits. 

I would like to give our dinner guests a healthy menu, one which would feature vegetables, grains, clear filtered water and fresh fruit for dessert. I would like to host this dinner during cold winter weather, using our wood stove to supplement the oil furnace that we really cannot afford to turn higher. While the stove would keep them comfortable, they would see that carrying in the wood and maintaining the fire and the area surrounding the stove would take energy and attention, more so than simply turning a thermostat higher. 

I would ask our guests to bow their head for a moment of silence, meditation or prayer, just as I did with my colleagues for thirty years of public education. And I would teach them the Pledge of Allegiance in American Sign Language, explaining the meaning so evidently attached to each word's sign. And then, after dinner, I would offer a simple grace expressing thankfulness for the healthy food and good company shared. 

And I would wish them all well.

Related articles

• Why am I Eating Like This? (shrimpstirfry.wordpress.com)
• The Pledge of Allegiance in American Sign Language (terrypalardy)

Day 13 Health Awareness Blog: 10 Things I Couldn't Live Without

Today's writing prompt is  asking me to write about the ten things I couldn't live without. Things. People are not things, so I'll start this list by saying that the people in my life are much more important than the things. I could do without everything as long as I could keep my husband, children and grandchildren in my life. There are many other people in my life who bring me pleasure - friends, colleagues, relatives and acquaintances, but they are not an essential life source for me as my family is. Love is a powerful resource, reciprocal at its best, and devastating if lost.

Love is not a thing ... it's an idea, an emotion, a state of being, a quest, and a gift. I could not live without the love of my family.

Health is not a thing: it is a state of being, but perceived differently by individuals. I have a strong label on my medical folders: multiple sclerosis. It carries with it a prognosis unknown, with the bleakest projections far away on the spectrum from the mildest, benign end. End, you say? There is no end to a spectrum. And if you believe that, then both ends are equally infinite, and the darkest belief is balanced by the brightest.

If this is to be a bucket list of sorts ... the ten things I could not live without ... I really have to play with the word things, because what I could not live without are intangible ideas or states of being. there is nothing tangible on my list:

1. love: to be loved, and to love in return,
2. self worth: a belief that I can love and be loved
3. competence: being able to provide what I can do to better the states of others
4. compassion: to receive compassion and to feel compassion for others
5. understanding: a set of knowledge and an awareness of what that knowledge might provide
6. appreciation: for those I love, for the world of nature in which we live, for air, food, water and shelter
7.  courage: to face whatever obstacles stand in the way of those I love
8. will: to overcome those obstacles despite whatever personal challenges I feel at the time
9. success: as defined for myself, and as recognized by those I love, and in those I love
10. self-confidence: to allow myself to speak up for those I love, and for myself.

Are these 'things' that I expect to be given? No. They are emotions, beliefs, values and goals that I have accepted and sought in my life. They are what I have lived, and have tried to model for those I love, that they, too, can live such a life ... where material things have less value, less importance, and are less essential than the way we can live, with whatever we have, wherever we are, and whoever we will be, with and for each other.

Does this list negate the existence or importance of a spiritual belief? Does it neglect homage to a superior being? Does it remove the obligation of duty to a religious belief? Does it place us above a God?

If in reading this list, one is discomforted by the absence of a deity in name, then one is missing all that lies between the lines. Hindus, Taoists and Buddhists recognize the existence of the greatest spirit within ourselves and each other. Their greeting, Namaste, expresses this belief, this recognition, and this humility. Isn't it hubris, you might ask, to assume that the greatest deity resides within us? Humble may be the word ... no one of us is any better, nor any less, than any other of us. "The divine within me recognizes and bows to the divine within you."  What a powerful message to share with everyone in your life ... those you love ... those you dislike ... those you fear ... those you feel responsible toward ...  Namaste is the great equalizer. It is a word that challenges each of us to be worthy, to be better, to be as loving and compassionate a provider as we may have been taught to believe that God is.

Namaste, my friend. I trust that you understand my writings. They are written from within, with love.

Day 10: Write a Letter to 16-year-old-me

 

April 10, 2012

Dear 16-year-old-me,

I'm writing this from your future, and I know all that lies ahead for you on this path. You are a junior in high school right now, and it is the year 1966. Your greatest fear is that your friend Rick, your soon to be fiance, will be drafted when he finishes school. Many who don't go on to college go instead to the 'conflict' in Vietnam. He says he will enlist in the US Navy rather than be drafted, as he would feel safer with his feet on the deck rather than in the jungles. You want him instead to go with you 'back to Canada', where his and your grandparents grew up before coming to the states. He is saying no, he will not run away. 

I'm happy to be able to tell you that he will not be drafted: the country will, in 1970, the year he would be drafted, have the first collective draft, combining youth from ages 18 to 25 in one large lottery, and his birthday will draw a number high enough that many other thousands will go to the war before he would be called. You are both relieved at that, as you are now ready to start a family together. 

Your nightly prayer to remain 'happy, healthy, and together' will be rewarded for many years. Some years will be more challenging than others, as the country will continue to struggle with financial recession, gas shortages, inflationary prices, and eventually the demise of the manufacturing jobs that are going to other countries. Your job as a teacher will remain stable.

You will often fear that you will disappoint; you do not disappoint. You will worry about finances, watching other families reap great financial benefits for having chosen other careers; you will never be wealthy in a financial way, but you will always have enough for a home, food, clothing and transportation. It is enough.

 In time, you will make decisions with others, for others, and because of others. Some of those decisions will be beneficial for you and for those you love; some will be difficult to make and prove later to have been the wrong decision based on the wrong advice. You will make adjustments, and corrections, and you will live with Rick knowing that decisions about health are never easy, never clear, and you can only make the decisions that you will not look back on with regret. You do this, several times. You learn to trust your instincts.

You will learn that living in the northern latitudes may have affected your health, though in a different way than that of your sisters and brothers. None of them will have the diagnosis that is ahead for you, and so will never make the same decisions about nutrition and physical health that you will have to make. You will stay one step ahead of the curve in those decisions, researching nutrition and medical care and choosing to try and then to stop as you discover what the researchers are finding and slowly revealing to the public. Gradually, you will come to believe that following your own knowledge, instincts, and life lessons will guide you to make the best decisions for you, regardless of what others may suggest in disagreement.

Vitamin D deficiency will be a part of your retirement. Supplementing that and other vitamins will become important to you in your late fifties, but no one will advise you of that, and you will eventually read about it and move in the direction that will benefit you. Be confident and follow your instincts and your learnings. 

I wish I could advise you not to worry, but it is in your nature to worry, to plan, to prepare for the next challenge, and to work hard to overcome each hurdle in your path. Worry seems to work for you.

You will take a quiet advisory role in your sixties, sharing research and findings through something called a blog, where people can stop in and read and make their own decisions about what you have found. And it will be enough. They have to make their own decisions, their own changes, and their own adjustments. You may not be there to see their decisions and their results. You do not have to be there. You have to make your own decisions, and they will have to make theirs.

You will always be wary of what life will place in your path. But you will always be prepared with self-sought knowledge, with determination, and with strength that at times seems heaven-granted. 

You will find happiness in realizing that enough is simply that: enough. 

Related articles

• "What, me worry?" - a lesson from Alfred E. Newman (ptl2010.com)
• Vitamin D and Calcium: Are We Getting Enough? (everydayhealth.com)

For the month of April, I've renewed the discount at CreateSpace for Multiple Sclerosis an Enigma. To receive 35% off the regular price, go to this link:

https://www.createspace.com/3711313 

and enter this discount code at the checkout: VXXURQMH

Day 7 Health Awareness Writing Prompt: Write about What You Want Today.

See, I thought I was on track for securing what I want. I had gone to college because my guidance counselor saw potential in me. When I finished the two-year school, I headed into the work force, and then married, and began a family, which is what I'd wanted to do. And I was happy.

The economy, though, was crashing in the early seventies; gas was rationed to every other day purchasing, inflation was eating up what I could earn in my part time position in a department store that was seeing a slow down of purchasing, and I realized that the time had come to go back to college while it was still affordable and get that teaching degree that would let me take a stable position. That was the new want - I wanted to teach, and to work in a secure environment that would not be harmed by fluctuations in the stock market and in supply and demand. There would always be a demand for teachers, for there would always be students. And when I finally signed the teaching contract six years later, I was happy.

Our family continued to grow, first with a second child, and then with grandchildren. It grew and grew with cousins, and we often got together to share holidays. But then it began to shrink: our parents were aging and declining, and needing more help from us. When they had finished passing through the sadness of decline, and were laid to rest, I looked at where we were then, saw that I had managed to keep my job and my professional reputation intact, and saw that we still had each other, and I was happy.

When my own symptoms took me to the doctors' offices, and I learned that they believed I had multiple sclerosis, I decided to comply with the diagnosis and take the prescribed injections each night, rather than taking the less frequent interferons which could have interrupted my attendance at school. I stuck with that prescription for four and a half years, following it downward into a depression so deep that I needed additional doctors and prescriptions to help me out of it. When I finally exited that, I decided to go with my inner belief and stop the injections, as their side effects of depression and anxiety had already cost me my teaching position. With the guidance of family and friends, I got through the paperwork and secured a pension; it was less than it would have been had I been able to stay longer, but what happened had happened, and was irreversible. I once again took stock: I realized I had completed thirty years in the classrooms, believed I had done some good, and still had a happy marriage and so I could be happy about that.

So, what do I want today? I'd like to say I know what I want, and that I have a plan. Truth be told, I am happy with the way things evolved thus far. It would be nice to earn a little extra money to compensate for the shortfall in my pension, but in time, we will have some of the larger bills paid off: bills I took on believing I would have two more years of full salary to pay for them, but I haven't, and so we're tightening out belt until they are paid. I don't want for much, ever. My father told me years ago, when he retired, that we didn't have much, but we had enough. It is my mantra now. There isn't much left to want; I have it all. Peace, love, a home, food to eat, and a family with which to share my stories. It is enough.

Related articles

• America's History of Rising Gas Prices - Part 1 (bridgebizstem.wordpress.com)
• Jeremy Laurance: 'Wireless medicine' helps solve one of doctors' biggest problems - getting patients to take drugs (independent.co.uk)
• Great expectations, limited means (theglobeandmail.com)
• Retire Liks It's 1999 (foxbusiness.com)

Two more reviews, and Day 5 of the WEGO health prompt

Day 5: The Ekphrasis Post. Go to flickr.com and write a post inspired by the image... link it to your health focus ... post the image.

I found at that page Rodin's sculpture, The Farewell. and wrote what elicited this initial reaction/post from me:

I can't post the image, as it is noted "All rights reserved."  But I have linked it here for you:
 "The Farewell" by Rodin (sculpture)


The eyes appear to be looking to the left, indicating a memory. The hands seem to be repressing a spoken thought, remembering something that ought not be shared. It's a pensive pose, and one suggesting some confusion. The word "enigma" is titling the post of this image.

I use the word enigma in my book title, Multiple Sclerosis an Enigma. It is a diagnosis that leaves one with only unknowns, and regrets for having sought an answer but having found only more questions. I was my doctor's enigma, a patient with a great deal of clinical evidence of the disease but showing few visible symptoms, and no acceptance of what science pronounced as true.

I've often written in my journal of the losses brought to me with this diagnosis. My reaction to the treatment prescribed was negative, prompting unwanted feelings of present and future losses, beginning with the loss of energy (fatigue), organizational skills (depression related) and anxiety (also depression related.) These losses led to the loss of my career (public school teacher) and my self image (30 years of successful teaching and collegiality.) My loss of my classroom created a void in my social contacts, loss of my partners and their wit and wisdom. I might well have, at times, taken the pose of Rodin's sculpture.

So, to turn this post from negative to positive, I will offer you other reactions: those of readers of my book!

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

There are two more reviews posted at Amazon for Multiple Sclerosis an Enigma:


From "Hot Toddy", an author whose own book shares the story of an MS diagnosis and path:

As avid readers know, the quality of books in the literary landscape has changed, but Multiple Sclerosis, an Enigma by Author Terry Crawford Palardy renews our appreciation for the written word. Author Palardy skillfully composed a well-written book and conveyed a story of compassion and resilience for her respected readers.

As a former teacher herself, Author Palardy did not ask the reader to overlook typos, or disregard poor sentence structure. Instead, the book is a well-formatted, fluid glimpse into the sometimes challenging, always endearing family she so eloquently introduces to us.

We learn who the self-described author and her family are, not by what she says, but by what they do. She doesn't tell us within quotes, that she and her spouse love their parents instead she tells us that they visited them daily, sacrificed their own finances, yet continue to smile when visited by a memory of their now dearly departed parents. Her wonderful husband doesn't spout I love you's either, rather the author tells us that he carries her purse without hesitation. In addition, she doesn't 'tell' us that she's a dedicated teacher, but she tells the willful doctor that she's happy to see him...anytime outside of school hours. We experience the compassion and commitment that exists within this family from the deeds so proficiently, yet humbly described.

Yes, there is talk of doctors, diseases, diets and medications, but it's framed so very well in a magnificent family photo.

Multiple Sclerosis, an Enigma, is a story of unconditional love shared over decades between generations of two families joined by a marriage strengthened from reverence to their marital vows.

It's a worthy investment for the serious reader who will immediately share this title when asked, "Have you read any good books lately?"


From Faye, another friend who shares the diagnosis of MS: 

Amazing! As I read along, I felt I was walking right beside her. In the story you could see that she was sticking to her recollections of symptoms throughout her life starting at an early age. And as I stated to her, I wonder also, were her family members misdiagnosed and had MS as well. We will never know. I felt comfortable walking beside Terry through her journey as I felt she had my heart in hand. I admired her for many years, but now is "special" to me! Quite brave to share such intimate details along this struggle we all experience in the Dragon of MS.

I recommend to all with MS and friends/family of someone suffering from MS!

Beautiful Read!

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

Related articles

• Educational Resources Uncovered: Multiple Sclerosis (abledis.com)
• Recovering from multiple sclerosis with nutrition (mnn.com)

For the month of April, I've renewed the discount at CreateSpace for Multiple Sclerosis an Enigma. To receive 35% off the regular price, go to this link:

https://www.createspace.com/3711313 

and enter this discount code at the checkout: VXXURQMH

WEGO Health Prompt Day 4: Why I write about my health

 Why do I write about my health? The answer to that question has changed through the years, as has my health.

In the years prior to diagnosis, I wrote more about my parents' health. They both experienced difficult health issues during the last two decades of their lives: a pacemaker for one, a new hip for the other, failing eyesight with age, cancer surgery for both, and then Alzheimer's and Parkinson's. I kept track of their symptoms, prescriptions, appointments (with my husband's help) ... I was their health proxy, and so I was in contact with their doctors (with my sister's help) ... and what symptoms I had myself took a back seat until their issues brought closure to their lives.

And then I wrote of my symptoms, fully expecting to follow my parents' path toward Parkinson's Disease. But along the way diagnostic tests, appointments, doctors' names and my own health proxy (my husband) became the topics in my journal. The completion of those tests led to the diagnosis of relapsing remitting multiple sclerosis. It was not what I'd anticipated, but it was what I got. And with it, I was given a prescription for a disease modifying drug, but no cure.

My journal entries darkened with anger, and trembled with frustration, anxiety, and fear. How could I have multiple sclerosis? No one I knew had ever had this diagnosis. How could I give myself an injection each night? How could I ask my husband, who had managed his own parents' illnesses, involving cancer, blindness, COPD and depression, as well as assisting with all my parents' care ... how could I ask  him now to help me?  How could I go into my classroom each day for another six years, and finish my career on my feet, with the dignity I'd worked so hard to preserve?

My writing helped me to realize that my disagreement with this diagnosis might be disputed by scientific evidence ... the lesions were there ... but my inner self believed that the diagnosis was wrong, and so the treatment was wrong. It was horribly expensive, and though I had a good insurance policy and paid only a small fraction of the thousands of dollars it cost each month, I knew that policy holders' premiums were going up each year, as was the price of my medication. I felt it was unnecessary; I felt it was wrong; I feared that, if it was wrong, it could be causing more damage rather than repairing anything. It made only vague promises of perhaps slowing the progression by 30%, but no guarantee for any one patient. And it interacted with my immune system, which worried me.

I was experiencing no relapses, but I attributed that to my change in menu and my loss of fifty excess pounds, the resulting lowered blood pressure and better energy levels. But through the four and a half years of this treatment, I became more depressed and more fearful of what it might be doing, and writing out those fears, and explaining with written words those disagreements and my rationale for them, I was able to make the decision to follow my heart and discontinue the treatments.

Had I not written my story, I may not have had the courage to follow my beliefs. I am no longer taking the injections with their prohibitive financial costs ... I no longer feel like a fraud carrying a diagnosis that didn't seem real, and I am feeling better each day. I recently walked five miles to raise money for MS research, and I have no reason to stop doing that.

Some say my feeling better is simply a placebo effect; I want to believe that I am better without the injections, and so I believe I am feeling better. But I say perhaps it was my own belief that the medication was doing me harm that made me weaken while taking it, and so not taking it has relieved that burden of worry, depression and anxiety that I had taken on myself. Who is to say whether they or I am right or wrong?

The experts in the study of multiple sclerosis are also conflicted; the assumption that treating the immune system will slow the progression is now being disputed not just by patients like me, but by doctors who are saying this may be a metabolic issue rather than an immune disorder; it may be related to the nutrients needed for healthy mitochondria, in which case my healthier diet was the right choice to make, and that is a validating statement for me. Vitamin D is finally being discussed more openly rather than being left unaddressed.

I will stay in the seven year Parkinson's Disease risk study with the National Institute of Health in Bethesda, if they will have me. There is some question as to whether my current prescription of anti-depressant will conflict with their protocol of testing, and so I may not be able to participate until I have been able to stop that medication. I will write about that in the weeks to come. If I am in their study group, their testing will show any indicators of Parkinson's Disease earlier than might be known if not in the study group. And contrary as it sounds, that medication treatment is one I would willingly take, in an effort to study its efficacy and benefit future generations of my family, and beyond.

I will continue to walk for MS, because I can. And in time I will begin to walk for Parkinson's Disease fundraising, for as long as I can. I still believe that is what lies ahead in my future. The tremors that I experience resemble those of my mother and father. Time will be the judge of whether that, too, is right or wrong.

Related articles

• Parkinson's Awareness Month (spittoon.23andme.com)
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• Tips to Help Parkinson's Patients Move Through a Freezing Episode (everydayhealth.com)
• Recognizing the Progression of Parkinson's Disease Symptoms (everydayhealth.com)

For the month of April, I've renewed the discount at CreateSpace for Multiple Sclerosis an Enigma. To receive 35% off the regular price, go to this link:

https://www.createspace.com/3711313 

and enter this discount code at the checkout:VXXURQMH

Day Three Prompt: If you had a superpower, what would it be and how would you use it?

Hmmm ... a superpower. What would it be? What would I most like to have as a superpower? And if I did use it, would it benefit some without causing harm to others?


For example, mind-reading ... if I could read others' minds, recognizing truth vs lies, courage vs bravado, honesty vs deception ... what would I do with that knowledge? Would I make my power known publicly, as Superman did? Or would I hide my power from others to protect myself from those seeking power over others? Would I be so distracted by others' thoughts that I would lose awareness of my own? Or would I use that knowledge to try to intercede in conflicts about to be, in the optimistic belief that I could make a difference if only I knew what motivated the disagreements ... or would that intervention serve only to make things worse?


Or would I want a superpower that was physically beneficial? If I suddenly became invincibly strong, able to lift great weights, or dive to great depths, or climb mountains tirelessly, or run endlessly at great speeds... perhaps that strength would have value a hundred years ago, but technology today can help people do all of that virtually, communally, through immediate technological communications, explorations, and demonstrations.


Could I have a superpower that would make a difference in the world's political arena? If I were able to implant positive, peaceful motivations in world leaders' minds leading to the recognition that, regardless of geographic location or economic situations we ought to act as one united human race, protecting our planet from further devastation, pollution, and consumption? Would my priorities, my beliefs, my values and my humility and altruistic desires serve to better the human race's situation? Could I make the best decisions?


If I had a superpower in my brain, a creative discovery of the best way to grow enough crops in even the worst climates and soils, to help every area on earth become self-sustaining and not dependent, would it allow various cultures to retain their identities without retaining their legacies of hardship, starvation and disease? Could such a brain recognize and share natural disease treatments? Would the population then increase exponentially across the globe? How many years would the natural resources last? Would a super-powered brain be able to plan for that?


I'm not a super-powered being. I'm a rational American, one who has followed the rules, set goals, and worked toward them, accomplishing much along the way and learning to accept the shortfalls that come with life. I think often of the word Namaste ... translated by Mother Teresa to "I see God in every human being" and by the people of Hindu belief as "I recognize and bow to the divine in you, as you do in me."  If we all could accept that premise of life, what a beautiful race we could be, with the superpower of respect.


Related articles

• The Complex Process of MS Diagnosis (everydayhealth.com)
• The future of humans (strawberryindigo.wordpress.com)
• The CIA's War On Human Consciousness (disquietreservations.blogspot.com)

For the month of April, I've renewed the discount at CreateSpace for Multiple Sclerosis an Enigma. To receive 35% off the regular price, go to this link:

https://www.createspace.com/3711313 

and enter this discount code at the checkout:VXXURQMH