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Showing posts with label Multiple sclerosis. Show all posts
Showing posts with label Multiple sclerosis. Show all posts

Sunday, July 21, 2013

Multiple Sclerosis, Melanoma and More


In response to Multiple Sclerosis, an Enigma readers' questions and expressed wishes to follow more of Terry and Rick's continuing story, Multiple Sclerosis, Melanoma and More is introduced. 

The sequel is now available on Terry's new author website: http://www.TerryCrawfordPalardy.com

It is also published in print (paperback) and Kindle form, at Amazon: Click here.

Smashwords also has made it available for other ebook format: Click here.

Thanks for shopping with me at my new website! 

 You can find me easily at the New England Authors Expo at the Danversport Yacht Club on July 31, 2013 (open to the public, free, from 4 to 9 pm.) Just look for my new banner!


Friday, June 7, 2013

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

Wednesday, September 19, 2012

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.
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Thursday, July 26, 2012

Breaking News: Mama Cow's Revenge?

This has been an amazing week for news in my world. What, you didn't hear it? You are not aware of the news that the interferons used by tens of thousands of Americans with multiple sclerosis has been declared ineffective? Or the news that dairy products in fact weaken bones and contribute to osteoporosis?  I'm not surprised.

I'm talking about the news involving multiple sclerosis, its treatment, and the shattered faith of so many doctors and patients who invested not only their money and time in these injections ... setting up the every-other-night or once-a-week injection, attending round table dinners to discuss the side effects and how to manage them, reading and researching efficacy on the web and in research study reports...but risked their health and immune systems, their employment, and their sense of self-awareness.

You didn't know that your insurance premiums have no doubt been rising each year because the cost of these pharmaceutical treatments has been rising dramatically? Or you thought those higher premiums perhaps meant improved treatments and so would be a worthy investment on your part?

The liquid solutions being injected by tens of thousands of people with multiple sclerosis, called interferons, have not changed their formula in the past decade. The pharmaceuticals have changed to a higher gauge needle (a smaller size) for patient comfort, but surely that change wouldn't justify a doubling of price over the past six years, would it? A price that was already approaching, and now exceeds, $3000.00 a month? A price that some patients must pay out of pocket, because they do not have insurance for medications ... and others must pay an exorbitant percentage of, because their insurance sets caps on medication expenses? It's a price that many with good health insurance are fortunate to pay only a small fraction of as a co-pay, or a price that causes some patients to refuse the treatment at the expense of criticism from others who believe they are choosing, then, to progress more rapidly toward immobility, and more expensive care.

Researchers have for years been trying to find one confirmed cause for what they call "Multiple Sclerosis." They are most often funded by pharmaceutical companies who of course want to be on board with the discovery, and ready to develop new formulas that will combat this disease. But the researchers cannot agree ... some say it is an auto-immune disorder, which the interferons try to treat by interrupting the T-cells of our immune system from mistakenly attacking our own myelin-sheathed nerves. Some say it is a metabolic disorder, related to the typical European and American diet, filled with inflammation-producing fats and proteins once thought to be part of healthy nutrition. Others say that it is environmentally and/or geographically caused, and still others believe it is an unidentified virus that, once discovered, can be treated with different medications.Until there is an identified cause, there can be no marketable cure.

Perhaps the higher prices being charged by the pharmaceuticals are then funding forward-looking research, developing the oral replacements for these pesky injections? Surely it took some know-how to get the irritating solution that causes pain, inflammation of the skin and tissue, and hormonal flue-like symptoms into a formula that could be tolerated by the human digestive track without causing even more intolerable symptoms. Isn't it ironic, though, that these new oral meds operate on the same premise as their predecessors, the injections? They are following the same path; they are still interferons, after all. The goal is to defeat our immune system response to perceived danger. Unfortunately, some danger, like cancer, is real. We need a healthy immune system, not a confused or suppressed one.

The links below are some of the news articles that didn't appear "above the fold" in your morning news, nor were splashed across your television screen as "Breaking News." Please do take some time to read them. It is news that matters to the 400,000 or more People with Multiple Sclerosis (now called PWMS) in America, and to their doctors, and to their families, friends, colleagues and co-workers.

And the dairy story? Many of us stopped eating white Wonder Bread, advertised 'back in the day' as one that would "Build strong bodies twelve ways" when we realized that less processed grains were more nutritional grains. But our society has persisted in telling us that dairy is an essential nutrient in our lives ... especially in our children's formative years, while their bones are still growing.

But the news this week forgives those of us who turned our back on that all-American menu of a glass of milk with each meal. Some of us simply reduced the fat by turning to skim or low fat versions of the white milk on our tables. But it is still milk. Cheese is still milk. Cream is still milk. Butter is still milk. Ice Cream is still milk. Some of us stopped consuming most dairy products in our diets. People in our circles of friends and family were not necessarily pleased with our choice. The dairy industry fought back, with billboards and posters and T-shirts that read, "Got Milk?"

Milk and other dairy products are now recognized for more than just the fat they added unnecessarily to our bodies. They are now seen as harmful products that will eliminate the bone-building cells in our body. Dairy  products come from bovine animals: cows. Cows have a different biological system for processing food. In their systems, bacterias harmful to the bone-building cells in a human system live, and thrive. In our systems, they destroy.

The consumption of dairy products has now been linked to an increase in risk for osteoporosis. Please see the related articles below for more information about this now-proven link between cow's milk and human vulnerability. We ought not mess with Mother Nature's rules.


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Monday, July 2, 2012

Reflections on Multiple Sclerosis, an Enigma

It's my fifth year anniversary of living with the knowledge that I am diagnosed with multiple sclerosis. If you've read my book, you know that I'd had symptoms of something long before I had a diagnosis. I'm going to feature this book for this week, and offer the discount I've been offering week by week for other books of mine. But I first want to talk about multiple sclerosis: not about the diagnosis, and not about the "treatments." I want to talk about the disease itself, and about some of the people who are involved in the fight against it.

Recent news articles have revealed that Jack Osbourne has been diagnosed, and that his mother, Sharon, has shared her feelings about her son's diagnosis. People Magazine ran a headline on its cover, quoting her as saying "I will not let my son die!"  That headline misrepresents multiple sclerosis as a killer; while some who have primary progressive multiple sclerosis do, in the end, die of complications involving their autonomic systems such as breathing, the disease does not "strike young people down" and immediately cause death. It does strike them down in terms of mobility and other critical life functions. For many people with multiple sclerosis (sometimes referred to as PWMS in the literature) vision is a susceptible loss, in some cases permanent but in many more transient. The utter unpredictability of multiple sclerosis damage and symptoms is what provokes anxiety and depression in those who have it, and those conditions also cause a host of others: insomnia, loss of appetite or emotional over-eating and weight gain, loss of self-worth and initiative, and often loss of employment and income.
Types of MS
Types of MS (Photo credit: Wikipedia)

Another person in the news is Mitt Romney's wife, Ann, who has lived with multiple sclerosis for a long time, and has spoken of her challenges in physically keeping up with the presidential campaign. She has also borne some criticism for making multiple sclerosis look easy.

For both of these PWMS, money and lifestyle certainly are factors in choosing their treatments, while many others are struggling to make ends meet, having lost their chosen employments due to weaknesses that stem from the symptoms of multiple sclerosis. The expense of treatments is high, and differs in the United States depending on an individual's health insurance policy's caps and co-pays.

To whom do PWMS turn for advocacy, assistance, and advice? The National Multiple Sclerosis Society has run campaigns for years in an effort to raise money for research funding. They also fund advertisements to raise awareness for multiple sclerosis, and maintain a website that hosts videos offering explanations of the symptoms via interviews with patients and doctors alike.

I learned recently that forty-five  years ago, while I was a senior in high school and then a freshman in college, Barbra Streisand made a video on behalf of people with multiple sclerosis. I then checked on Facebook, but found she has moved on to support Women's Heart Health. There are others who are working to raise awareness of multiple sclerosis and of the need for funding toward a cure.

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)

And here is a recent review of Multiple Sclerosis an Enigma, posted at our page at Facebook:

From Catherine Mahoney:


"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 have 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."
Thank you, Catherine!

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Wednesday, June 13, 2012

The Final Two Chapters of Teaching Vol I

Today I'll  add on to the blog's focus on Teaching: Education and Academics at the Turn of the Century. If you're just starting here, you may want to go back to the beginning of the week by clicking here and then reading forward.

Summarizing these chapters here in the blog this week  has caused me to further appreciate how far we have come since the writings ... when I began these articles for Phi Kappa Phi, I was composing on a desktop computer, sitting in a wooden kitchen chair upstairs in my bedroom. The computer was tucked into an armoire / entertainment center that was designed for bulky desktop components: the tower of power was horizontal and worked as a base for the computer monitor. Three and a half inch (not so) floppy discs fit into the tower in numbered 'disc drives' and had only a fraction of memory capability compared to today's tiny little flash drives / memory sticks. The keyboard sat on a sliding shelf beneath the tower. The printer was on the lowest shelf, next to reams of paper and an astonishing bulk of cables and electrical cord., all  nicely hidden with the armoire doors closed. I wrote often at night, or in the early morning, before heading off to my classroom.  The writing began in a spiral notebook, written while sitting out on the porch during warm weather, or in the back entry room next to the wood stove during winter. Such different settings than today's; now I have the mobility of a wireless laptop, and yet rarely roam from the comfortable couch in the living room.

But, let's look at these final two chapters in Teaching: Education and Academics at the Turn of the Century. The one titled An American Issue was written during a contentious fiscal battle over the rising costs of running a school district. During that difficult time, we were also hearing for the first time about the Mrsa Virus ... an infection that could be easily passed from one to another by tactile contact ... doorknobs, water bubblers and hand rails on a stair case were suddenly viewed as venues for contamination. I had recently changed my teaching assignment from elementary classrooms to the middle school, and from the west side of town to the north-east corner. In medical terms, I had entered a new germ pool, which explains my emphasis on cleanliness in this chapter. I open this chapter with a reference to the American Revolution and the resulting 'bad taste' left in our mouths for increasing taxation.   I encourage both teachers and parents to recognize the need for a consolidated, cohesive joint effort in establishing reliable funding for our ever-increasing enrollment and expenses.

The final chapter of commentary is titled Questions Worth Asking, and it is written again as a dialogue between two individuals, a teacher and her principal.  Our principal at the middle school was known for his forward thinking in terms of school reform. He had carefully built a staff with mutual respect, and I wanted to give him an opportunity to publish his own thoughts. As this would be the last writing of my three year term as a columnist, I invited him to co-write it with me, and worked very carefully to maintain both his style and my own. In this conversation, the teacher and principal discuss the affective, social side of students. We exchanged drafts on one of those floppy discs, back and forth, reading and reviewing what each of us had written, and finally came up with the article that closes this little book.

Remember, you can purchase a print copy of this book from CreateSpace by clicking on the link in the upper right margin of this blog, and entering the discount code at the checkout to receive a 40% discount this week.

Next week, I'll showcase my first volume of Poetry to Share.  But before I close today's blog, I want to share two more reviews of Multiple Sclerosis an Enigma:  One came to me via 'snail mail' from Canada, and the other is in a comment at the Facebook page I maintain, named for the book. Here's what each fan had to say:

Joanne wrote:
"... to give you a terrific review of your book. I and my whole family read your book. We are giving it five stars out of 5. Your book is excellent. My sister-in-law really loves your book. She could not say enough about it. We all love it."

And Paige left a comment at the Facebook page:
" I loved the book. Made me feel not so alone."


And I love their reviews.  I'll come back to the blog in the next day or so to share reviews that are written about Teaching: Education and Academics at the Turn of the Century. Be well!
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Sunday, May 13, 2012

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 : star star star star star
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 : star star star star star
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)
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