Three years and 9 months of relief

Saw the urologist today. My plumbing is so much better than the first time I saw him (just before my Polish liberation treatment in 2010) that he says there is no need for my annual checkup any more. A few months after my CCSVI treatment I stopped taking the meds he had me on. Over the years since I first saw him, my urological symptoms have improved. That, my reduced fatigue and better balance all improved after my treatment. A coincidence? I don't think so. Even as other symptoms (especially strength and control of my left arm and leg) continue to worsen, I am still reaping the benefits of my trip to Katowice.

With daughter Anna, while on our multi-vineyard tour of South Australia at Christmas and New Years. Good thing my plumbing works better!

Status: New Normal

It's been six weeks since I last posted, mostly because we were in Australia and New Zealand to spend Christmas and New Years with the kids, not because there was nothing to report. I wonder if I still have any readers?  In any case, assuming there are still one or two of you checking in once in a while:

Kids collaborating to push me up a big hill in 

South Australia... amazing how a small incline 

can make pushing SO much harder.

• In two weeks it will be exactly 10 years since I was diagnosed: February, Friday the 13th, 2004. A lot has changed in that time.
• Strength and control of my left arm and leg continue to deteriorate, and the numbness and loss in dexterity in my right hand is getting a little worse. I walk with poles or a cane outside of the apartment. In Oz and NZ I was wheeled around in a rented wheelchair, mostly by our kids. Winter, for me, is hell: the icy parking lots are a fall and broken leg waiting to happen.  The idea of spending winter in a climate that has no snow or ice looks better all the time.
• My left leg swells in warm weather (and on flights), and turns to ice in cold weather. I would say that this has gotten worse over the last year.
• I had a shortness of breath while in Australia and NZ, and it has continued since I returned. Its like the feeling you get when you've had too much turkey at Thanksgiving: like your lungs can't expand enough to take a full breath.  It reminded me of the time on a trans-Pacific flight in the 1990s when I got short of breath, either because of an allergy or because the pilots had lowered oxygen levels (to save fuel). Some (most) of the times I've felt this, it was accompanied by that old "MS hug" feeling that I haven't noticed often since I returned from my treatment in Poland (almost 4 years ago!). My GP says my lungs and heart sound good, though he'll have more tests done.
• On the other hand, and speaking about the results of CCSVI treatment in Poland, I continue to have good balance and my autonomic functions remain greatly improved.  Now sometimes my balance seems worse because I trip over my semi-useless left leg, but that is simply because it's hard to walk with such an appendage.  My energy is also still much better than before I went to Poland, though this winter I seem to want to take naps after lunch, and some afternoons that turns into hours-long hibernation.  However, it isn't (usually) accompanied by that heavy, lethargic, stunned feeling I used to get before my "Zamboni" treatment.
• I continue to do physio with a therapist who is really interested in trying to help me get the most out of my diminished capabilities, and Pilates with an instructor who is equally engaged in my situation. I've not gone to yoga since coming back from vacation, but that's because the icy hillside parking lot at the yoga place is just too daunting. I didn't do any of those while on vacation, but am now (slowly) working my way back into my daily routine of physio and/or Pilates and/or yoga.



The scooter I'm considering is the Pride Pursuit XL, pictured here.

• We've decided to get me a scooter in the spring: I'm bowing to the reality that, except for biking, there is now way for me to get around any distance without a car. This way, I'll be able to go out for "walks" with Mary and even on longer bike rides (I can only bike for about a half hour). I should have done this last spring, and not had a summer of reduced activity. 
• As far as drugs go, I'm still on arthritis, spasm and nerve pain drugs that seem to be working (at least making things better than they otherwise would be). After discussing it with my GP, I've decided to stop taking Lipitor (for my cholesterol), at least for a few months. I've been taking it for over ten years, and my doc agrees that, given my other problems, chancing higher cholesterol while testing to see if any of my "MS" symptoms get better after dropping Lipitor is a worthwhile risk.
• There has been a lot of news on the MS research front: results both supporting and denying the existence and/or treatment of CCSVI, stem cell research that looks interesting, and even our old "friend" Dr. Freedman is publishing results of his multi-year study into his technique of killing the immune system, then building it up again using bone-marrow cells. A lot to digest, but If I have any thoughts on it, I'll put them into a future post.
• Finally, I should note that I am now on a disability pension from CPP and could have been since I retired. Still, once I was on it, they also gave me 15 months of "back-pay".  Besides giving me a little more than my "reduced at age 60" CPP, it also means that when I get back on regular CPP (at 65), it won't be reduced.  Since getting it I've realized that a) I only found about it by accident and b) there are a lot of other people out there who don't know about it, who should. Spread the word!

Bacoflen and Nabilone are working

I started on Nabilone this summer (for my sciatic nerve pain) and on Baclofen (for spasms) this fall. The Nabilone has definitely made a difference in my sciatic pain, noticeable after several weeks.  This is the second time I've tried Bacoflen: the first time I gave up after a couple weeks because I felt that it made me feel drowsy without any noticeable benefit, but this time it really seems to have made a big difference in my spasms. Do Baclofen and Nabilone make me drowsier?  I'm not sure,  but so far I would say that the benefits outweigh the side effects.

CCSVI Study

Here is a study that found improved cerebral blood flow after CCSVI treatment: Phlebology article

CCSVI Studies - Five Years Down The Road

A very good blog posting by Joan - a worthwhile read for those following the CCSVI story: Joan's CCSVI in MS blog posting.

Dr. McDonald Sues Dr. Freedman

This is quite unusual: Dr. McDonald sues Dr. Freedman for libel (National Post article). Dr. Freedman is the neuro who has been vehemently against CCSVI, while Dr. McDonald is a surgeon who believes that occluded veins should be opened regardless of any relationship to MS.  Malicious intent is pretty hard to prove, but I'm glad that Dr. McDonald is standing up to a bully.

Jugular Blood Flow in MS Patients

Here is a link to research that seems to show that MS patients have a high prevalence of impeded blood flow to the brain: http://www.jvir.org/article/S1051-0443(13)01393-6/abstract. I hope they use the same technique to see how different that is from blood flow in patients without MS.

MS and Fatigue

As a MS blogger, I regularly receive notices of research, treatments, "cures", etc. When I see something worthwhile, something that may not be total BS, I pass it on:

For your blog, three recent studies have been published focused on the cognitive side of multiple sclerosis (MS).  Each study was published by researchers at Kessler Foundation (West Orange, N.J.) —studies that could eventually lead to cognitive therapies being approved for reimbursement by insurers.

Many know that physically, MS can cause muscle rigidity, pain and paralysis.  Lesser known are the cognitive effects -- including fatigue, trouble with memory and speech.

One Kessler Foundation study, funded by the National MS Society, found that people with MS performed worse on processing speed and memory tasks during warmer outdoor temperatures versus during cooler outdoor temperatures. 

The second study, also funded, in part, by the National MS Society, sheds light on cognitive fatigue in people with multiple sclerosis.  Cognitive fatigue is fatigue resulting from mental work rather than from physical labor. 

Meanwhile, the third study provides the first evidence for beneficial effects of aerobic exercise on brain and memory in people with MS.

Interested in learning more?  Please email me or call me at (856) 296-0741 to discuss.

Thanks,

Adam Dvorin

Winning Strategies PR

A small piece in a large puzzle, but may lead to something useful someday.

Book on MS

Here is another book on living with MS, but caution: the book is sponsored by a drug company. If anyone reads her story, let me know what you think:

An MS patient advocate named Kristie Salerno Kent has recently completed her memoir: Dreams: My Journey with Multiple Sclerosis. Her book, available free at www.DreamsTheEbook.com, is an inspirational example of the triumph of the human spirit and choosing to live life to the fullest after a diagnosis of MS. She is also now touring and singing at many MS- focused events around the country.

Dreams has been positively received by the MS community. As one reviewer wrote:

“Kent tells her story so candidly that you can’t help but to hope the end of ‘this’ part of her journey ends well and, when she shares the ups and downs, you admire her for her strength, nod in recognition of her denials and finally smile about her using her talent as an MS ambassador.” Examiner.com.

Trevis Gleason who has an MS blog on Everyday Health also reviewed her book and said:

“I found Kristie’s honesty about her search for explanation while simultaneously trying to avoid the much sought-after answers refreshing.  I too could relate to explaining away or ignoring until the disease would no longer be disregarded.“

Might you be interested in featuring a “guest post” from Kristie on your blog that details her experience with MS? You can also post excerpts from her book on your blog as well. And she is available to answer any questions via email.

Thanks very much for considering and have a great day,
Andrea

Andrea Coan

Berry & Company Public Relations, LLC

57 E 11th Street

6th Floor

New York, NY  10003

T: 212 253-8881     F: 212 253-8241

acoan@berrypr.com
www.berrypr.com

Diets for Autoimmune Diseases

I have not read this book, but offer it as something that might be of interest MSers:

As one of the over 50 million people in the U.S. burdened with auto-immune disease, Mee Tracy McCormick decided to fight back when this debilitating disease cost her all quality of life and left her near death. In her new book, My Kitchen Cure, she shares her amazing discoveries on the healing power of food! More than a cure for a personal ailment, this TV cooking personality has created a lifestyle that will help anyone suffering from any form of auto-immune disease.

Please read the following press release and let me know if I may schedule an enlightening interview with Mee, or if I may forward a copy of her book for a review. Thank you.

Gretchen Muro
615-557-5245
gretchenmuro@yahoo.com

FOR IMMEDIATE RELEASE

My Kitchen Cure: Conquering Chronic Autoimmune Disease and Cancer with the Healing Power of Food

Nashville, TN, October 24, 2013 - In her newest book, My Kitchen Cure: How I Cooked My Way Out of Chronic Autoimmune Disease and Prevented Cancer with Whole Foods and Healing Recipes (MeeLee Publishing – June 2013), Mee Tracy McCormick chronicles her journey from near death to a vital, healthy woman with two children, husband and a career that includes going into communities and teaching what she learned about turning around a health crisis.
 
Her story starts with hereditary Crohn's disease, an intestinal ulceration, a diagnosis of cancer waiting to be confirmed, and debilitating daily pain that knocked her down and left her teetering at a painfully thin 96 pounds. Medical tests, treatments and medicines that threatened to kill her before they cured her had backed Mee into a health crisis corner.

Not knowing how to proceed or even how to cook, Mee took it upon herself to transform her kitchen into her personal healing "laboratory.” She didn't know it then, but she understands now that by learning about the healing power of food, she was creating something bigger than a cure for a personal ailment. She was creating a lifestyle… a new way of being… a movement…. A REAL FOOD LIFE that could benefit everyone and, most notably, the 55 million people in the United States alone who suffer from an auto-immune disease, of which Crohn's Disease is one.

More than just "preaching” about this REAL FOOD LIFE, Mee has taken it upon herself to teach what she knows in public schools to private homes. She has set up Real Food Makeover Community Kitchens in Nashville and Los Angeles, sometimes working with card tables and butane burners, cooking with small groups or upwards of 150 people at a time. More importantly, she includes the less privileged in her mission.

"I know now that going through such challenging health issues that I still have to pay attention to, that there was something more I needed to do,” says Mee Tracy McCormick. "And, when I hear someone say that they were able to cut down on their diabetes medication or how they lost 40 pounds by just giving up foods that come in a box or can, it makes my heart sing.”

Written in three parts, My Kitchen Cure recounts:

•    The Who: Raised in Appalachia on a diet of chipped ham and ketchup sandwiches by a single mom who died young of hereditary Crohn's Disease; suffered herself for 10 years or more from debilitating abdominal pain and weight loss; married and started a family, but almost lost one daughter in pregnancy due to complications caused by her condition; eventually found herself doubled up in pain on the floor for 48 hours alone with her two young girls in the Mexican jungle; moved with her husband and family back to their ranch in Tennessee to get medical help; made the rounds to doctor after doctor whose solutions entailed dangerously invasive tests and mounds of daily drugs; finally found her answer in her kitchen; then created The Real Food Makeovers, going into her Nashville Community and shifting food deserts to food oases.
•    The What and Why: Part two covers topics like, "What is autoimmune disease,” ”Everything you need to know about sugar,” "Dairy, to eat it or not eat it,” What's real & what's fake in the food world,” and "Feeding our kids real food every day,” to name a few.
•    The How: The kitchen staples and equipment that a REAL FOOD kitchen should stock, along with 162 pages of recipes for breakfast, lunch, dinner, dessert, and everything in between.

Mee Tracy McCormick is a Real Food and Autoimmune Cooking Expert, TV cooking personality, a Food Makeover Consultant, a Community Food Advocate and the author of My Kitchen Cure: How I cooked My Way Out of Chronic Autoimmune Disease and Prevented Cancer with Whole Foods and Healing Recipes.

For more information on Mee, her REAL FOOD LIFE, her REAL FOOD MAKEOVERS and her book, visit www.MeeTracy.com. Her book is currently available on amazon.com where it is fast being lauded as the go-to book for autoimmune disease.

###

UPCOMING EVENTS

Community Kitchen Event featuring Mee Tracy McCormick
Music Row
Integrative Life Center
1104 16th Avenue South
Nashville, TN  37212
Saturday, Nov. 23, 2013 – 3-5 p.m.

McCormick will be hosting a community kitchen, where more than 100 people will learn to use whole foods in their daily cooking to support wellness.  


TIP SHEET:

Joan Borysenko, PH.D: "Mee is devoted to you, which is what this book is all about. You will read about devotion in action – how she goes into people's homes, listens to their stories, cleans out their cabinets, creates a healing kitchen, takes them shopping, and teaches them how to cook. The best part is that they heal. Mee is healing whole communities through her outreach to schools, churches, and well, all of us, through televised cooking lessons that are so delightful you'll want to run right out and round up the ingredients. Enjoy. Heal, and go out and spread the word!”

Carolyn Coker Ross, M.D: "Mee has written a book with heart and soul that takes us through the colorful pages of her adventurous life. The book shines a light on the pain and suffering she endured for years from her undiagnosed and poorly treated digestive disorder. This pain led her on a search for answers…[Book] is remarkable for its honesty and how it showcases her own strong, resilient personality…also remarkable because it shows that the path to TRUE healing doesn't start and end at your doctor's office or with a prescription. True healing happens when we listen to the still small voice in our hearts that leads us to our own personal path to healing, even when it deviates from what may be considered the norm or takes us to places that challenge us to look outside of conventional authorities on healing. Mee's journey to healing is fun to read about and chock full of useful information that will help many who read her book.”

Christiane Northrup, M.D., ob/gyn physician and author of the New York Times bestsellers: Women's Bodies, Women's Wisdom and The Wisdom of Menopause: "My Kitchen Cure is chock full of user-friendly, health-enhancing information. I highly recommend it.”