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Archive for the ‘Multiple Sclerosis’ Category

The interesting thing about blogging is that individual posts sorted by their categories can create a timeline of events that chronicle a life.  In my case I am referring to my previous posts about Multiple Sclerosis.  I don’t write about my life with MS often, but as I review my previous posts on that subject I realise that an update of my condition is in order.

Only four months ago I lived in a world of ever diminishing possibilities.  MS was getting the upper hand and I was rapidly descending into the netherworld of physical paralysis.  But in spite of it I was unwilling to give up the search for a way to stop progression.  I remember feeling somewhat belittled after reading my neurologists evaluation in June where he expressed surprise about my continued optimism to find healing.

Uncle Albert, putting it all into perspective!

He wrote:  “In spite of her marked decline from secondary progressive MS patient continues to explore alternative methods; she is still hopeful that her condition can improve.”

That was in June when my husband had to accompany me to my appointment because alone I would not have been able to navigate the ample corridors of the renowned medical center where I get my annual neurological checkup.

After that appointment, many things fell into place and my decade long search solidified into a true path toward healing.  And this is what happened:

I had been reading about the impact food has on people with multiple sclerosis.  Over the years I had encountered many personal accounts of how individuals found healing by changing their diets.  But it was not until I found Dr. Ashton Embry’s research, on his website www.direct-ms.org, that I saw a clear way to develop my own path that will lead me to regain my health.  Especially helpful was this article   http://www.direct-ms.org/sites/default/files/Embry-Darwinian.pdf.

Success finally came when I decided to have a comprehensive allergy test which included 250 foods, 10 food additives, 10 antibiotics, 10 anti-inflammatory agents, 10 environmental chemicals, 20 molds, 50 functional foods and medicinal herbs.  The laboratory which conducted the tests provided a complete report of my food and chemical sensitivities/intolerances in addition to recommendations on how to eliminate all problematic agents from my diet.

I implemented the recommendations immediately and was astonished by the instant turnaround in my condition:

Within three weeks of eliminating all allergens from my diet my bladder function returned to normal.  At week four the fine motor functions in my left  hand returned and I was able to voluntarily straighten my fingers. At week five I had a complete resolution of all bowel problems and my overall condition improved to the point where I was now able to be active a good portion of the day.   Today, only four months into the my personalized version of the MS recovery diet, all MS progression has stopped and I am able to take short walks outdoors.  I now know that I have found the way of healing; and for the first time in my twenty year journey with MS I look forward to what is to come.

Nothing can express the change in my relationship with Multiple Sclerosis better than the following metaphors.  I equate the first two decades of living with this illness as having a prowling tiger in my house.  I had to step lightly in order to avoid waking the beast; yet in spite of all my efforts, the beast could and would strike any time.

Now that MS is quiet and lies dormant, the tiger has vanished and in it’s stead the illness sits idle like the unused car in my garage.  I know now which foods turn the key and activate this dreaded disease.

Allow me to leave you with a blueprint for healing by giving you access to these life altering resources:

1.  For a full explanation of how and why the diet works please read Ann D. Sawyer and Judith E. Bachrach’s book:   The MS Recovery Diet, published by the Penguin Group, 2007.

2.  For complete nutritional information for people with Multiple Sclerosis see Dr. Embry’s website  http://www.direct-ms.org/recommendations.html and for recipes visit  http://www.direct-ms.org/sites/default/files/Direct-MS_Cookbook_0.pdf.

3.  Even though there are many ways to get tested for food allergies, I chose to get the complete test from www.Alcat.com.  It was expensive, but worth every dollar spent.

May this information become the bedrock on which you build your own path to healing.  Blessings to you all.

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The month of June has been busy here and a Sontheim update is long overdue.

The bird breeding season is in full swing and there are nests all around the house, in the bushes, in the trees, the meadows and in the prairie.  There even is a new swallows nest attached to the light fixture high above the front door.

Our hummingbird population has more that doubled with the first batch of fledglings that arrived at the feeders in mid June.  It is pure pleasure to watch these fat little jewels congregate for a drink of sugar-water.  At this stage in their development, the baby Hummers are very sociable.  Only later do they become protective of their turf.  I suppose there is a similarity to human behavior in that.  The Hummer moms are busy with their second set of eggs and will soon again have hungry chicks to feed.

Two days ago, before the big heat hit, we enjoyed a romp through the meadow.  Sammy and Lilly way ahead of Sophia and me.  My Berner girl and I could be considered slow-pokes when it comes to sprinting along the path.  And I watch with fascination when the dogs stop at their favorite places to chomp on tall leaves of grass.  And I wonder what Walt Whitman would have made of that.

Sam, the undisputed leader of the pack.

Now, that the tropical heat has us confined indoors there is ample time to sit at the computer and attend to our blog.

A big part of our recent silence is the effort it took to form a much-needed MS support group for our neck of the Wisconsin woods.  🙂 And I am happy to report that the group is well on its way to host monthly meetings that will commence in August.  Our website is up and the PR effort is in full swing.  But more of that later.

And speaking of Multiple Sclerosis, it is always good NOT to take NO for an answer.  Instead there is the YES I CAN as Janet Echelman demonstrates so beautifully through her art.

Enjoy!

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I don’t often write about the devastating disease that has me largely home bound,  but on a day when the simple task of taking a shower feels like climbing  Mt. Everest, I indulge in a little self-reflection.

True enough, Multiple Sclerosis has changed everything.   It has slowed me down, has taken my strength, and step by step it is wrestling mobility away from me. 

So today I climbed Mt. Everest and afterward the dogs and I ventured to the great outdoors.  With the snow melting steadily, it was crucial to get out and scoop the accumulated poop.  While I carefully guided my electric bike around the yard and frequently stopped to pick up the thawing unspeakables, the dogs joyfully bounded around, miraculously avoiding to step into any of it.

Since my forced retirement from business, the internet has become an indispensable companion and unlike my beloved dogs, this companion needs neither outdoor potty breaks nor frequent pettings.  And that is a good thing when fatigue rears its ugly head.

Of course, no computer could ever compete with a lovable Bernese Mountain Dog.

Meet Frost, the Berner pup who will steal your heart!

But back to the topic at hand.  For me the internet is a miraculous door to the world.  A door which I open every day and step through to participate in world affairs.  From my seat at the computer I have been able to connect with like-minded people, such as the Bernese mountain Dog community.  The picture of puppy Frost is a perfect example of the friendships that have come about because of the internet. 

Another example is the community of bloggers which I joined a few years ago.  A community that has brought a sense of normality back to my secluded life.   I dare say that some of the bloggers who interact regularly by commenting on each others posts are an indispensable part of keeping in touch with others and avoid social isolation.  A perfect example of such interaction is the pleasure I receive from Teresa Silverthorn’s blog:

http://teresasilverthorn.wordpress.com

And there are wold events, such as the shifting sands in the Middle-East.  Primarily through Al Jazeera Live I am able to step among the multitudes of people who have lost their fear of their oppressors. 

 

A most exhilarating time to see human history remake itself, as dictator after dictator teeters on the brink of justice.

And there are other communities,  the communities of people struggling with illness such as Multiple Sclerosis,  the communities of activists of all kind, the community of scientists, the community of people engaged in the creation of music and art, and so on…and so on…

And finally, the most important point about the incredible door that sits on my desk: 

I can close it at any time!  I can close it and pursue the other life that I have learned to cherish since Multiple Sclerosis has forced  itself upon me.  And that life is the one I never thought I would have the leisure to pursue, the life of contemplation, the life of quiet dignity, self-reflection and peace.  

And what could be better than that?

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I received a gift today which will make my life more enjoyable as I continue to live with the unrelenting progression of Multiple Sclerosis.  A fellow blogger who calls himself the ‘Wheelchair Kamikaze’ very aptly describes  MS as creeping paralysis.   According to his research, Creeping Paralysis was the original name of this daunting illness, before it was given the less disturbing and very sanitized name of Multiple Sclerosis.  For who the heck knows what ‘multiple’ ‘sclerosis’ really is?  I usually explain it to people by suggesting that they think of the brain being turned into a swiss cheese.  This explanation is descriptive in the extreme and also not very kind.  But after reading Marc’s post about the frustrations our shared illness brings, I shall use ‘creeping paralysis’ instead.  The name accurately presents the condition without exaggeration or hyperbole.

http://www.wheelchairkamikaze.com

Well, I know Multiple Sclerosis very well, in fact so well that after 18 years of acquaintance I know that the original name holds true.  And yes,  Creeping paralysis it is!  And there is absolutely no doubt about that.  Eighteen years ago I was strong and I participated fully in the richness of life.  I had built a challenging career, I was doing my share to make the world a better place through my philanthropic efforts, I had travelled around the world, and after my child had gone off to college, I opened my home to creatures in need of a nurturing home. 

And what a difference Creeping Paralysis makes:  today I am a recluse who hardly leaves her home.  It is difficult to appear dignified when stumbling about  and dropping things for no apparent reason.  At home it is easier to deal with failing limbs.

But  today I received the lovely gift from my sister. 

She cleverly devised a way to insure that my daily enjoyment of two cups of coffee continues. 

A lovely cup with two handles, angled in a perfect way to ensure a firm one or two-handed grip.  How cool is that???

And what could be better than a sister’s thoughtful love.  Thank you my dear Elke, your gift has brought me joy.

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For almost a week now, a low pressure system gave rise to the most uncanny storm that pummeled our area.    The dogs were going stir-crazy in the house.  They did not understand the hazards we would encounter on a walk through the meadows and along the woods edge.  But with wind gusts coming out of no-where at 65 miles per hour, it was simply too dangerous to venture out into the open for our daily outing.  

So here we were, coped up in the house!  And not much fun to be had, because of my chronic pain!  

A pain that, when it comes on strong, puts me flat onto my back and prevents me from moving even a single muscle.  I’ve come to think of this pain as “mine,” in the same way that Multiple Sclerosis has been “my MS” from the start.  It was easy to acknowledge the disease from its beginning eighteen years ago, but its devastating intimacy has been a surprise.

At a time like this I give myself leave to curse this vicious disease.  I ponder the nature of endurance and pain, but try as I might, I find no answer to the questions that arise from this kind of suffering.  No answer to the question

Why? 

What is its purpose?

How long can I endure?

But the suffering is a surprise, for I had known the gentler side of Multiple Sclerosis very well.  My mother’s sister lived with it all her life.  I saw how she slowly succumbed to a spreading vacancy in her brain.  I had never known her as a highly functioning adult, for the disease invaded her at an early age – years before my birth. 

When I was in my teens, I watched her slowly moving through her home, singing softly to herself.  I remember her child-like face that seemed content.  There was no mention of pain, no sign of mental anguish.  There was only the ever-growing emptiness in her eyes.

So the question is this:  “Which suffering is worse? ”

Mine? 

To be struck down in mid-life, having tasted adventure, hard work, and love?

Or hers? 

To have been given a life that was never lived?  A mind to be wasted by this unrelenting scourge?

And what of the pain itself? 

Are the philosophers right when they say that pain is an intricate part of being alive?   And if so, can I trust a Sufi teaching that says:

Overcome any bitterness that may have come because you were not up to the magnitude of the pain that was entrusted to you. 

Like the Mother of the World, who carries the pain of the world in her heart, each one of us is part of her heart, and therefore endowed with a certain measure of cosmic pain.”

And if that is true, can I learn to own the pain?  Can I learn to lay in it and let its searing power transform me?   

 

After the Storm!

 

 
 
 
 
 

 

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In the three and a half months since his arrival Sammy has brought pure joy to all of us at Sontheim!  In true Berner fashion, he is a bundle of love as he divides his attention equally between his mom and dad.
Upside down Sammy on the couch, showing us that life is good.

He has drawn Sophia further out of her shell and has learned not to run over Lilly when they play.  But most of all Sammy is the silly pup who makes us laugh. 

Tired or not, Sam is always ready for a snooze and a snuggle with his Dad.

He lives so thoroughly in the moment that we forget all worries by watching him.  “Climate change, natural disasters, religious hatred, political strive,” are all gone when we engage with Sam. 

Recently I have realized that Sam is also my medicine-man.  When Sam looks straight into my eyes I lose sight of  my intense struggle with the devastating effects of Multiple Sclerosis.  He seems to know when a depression is imminent and knows how to stop it before it takes hold. 

Much to my surprise I have learned that he will come running and place himself directly in front of me when grief and hopelessness threaten.  He looks straight into my eyes until my nervous system calms down and the danger dissipates.  This is no small feat, because over the last year depression induced thoughts of suicide had become a life-threatening part of my struggle with MS.   

Needless to say, my silly Sammy boy has become a life-line for me.  He is a true help in my daily struggle to survive and I am surprised beyond words that I have been given such a miraculous gift.  It is hard to believe that after years of  escalating struggle such help is brought to me by no other than a six-year old rehoused rescue dog.  

Our abode has been home for many rescued dogs and cats.  Some came from shelters, but most came directly from Chicago’s streets.  We were happy to take them in and save them from a miserable life and violent death.   They were:

Buffy the blue-eyed kitten, found in a wood pile outside a factory in Michigan.

Pingan, the gorgeous but neurotic cat, adopted from a group of students leaving the University of Chicago.

Obilot the blind Border Collie mix, found wandering the streets of Chicago after being hit by a car whose driver did not bother to slow down.

Georgely the little Bearded Collie, who was scheduled to be euthanized because he had been at the shelter for too long.

LuLu the Dachshund-Spaniel mix, adopted from the Chicago Humane Society, who became Georgely’s true love and playmate.

Bear the black ChowChow was snared in the parking lot of the United Center after three weeks of feeding him.

Lucile the Coyote-Shepard mix was rescued with her remaining puppy whom we named Toby;  she was Bear’s mate and followed him eagerly to her forever home.

Haley the little pup who was heared crying at midnight in driving rain in an alley behind the house.

Charlie the tiny kitten, who was rescued after falling into a sewer pipe in an alley in Chicago; and Fergy cat, who was saved from being smashed by a sledgehammer wielding boy.

Beanie the gutsy little Terrier had to be lured into  in the car by a passerby’s little female dog, because he was mortally afraid of people after spending a lifetime on Chicago’s streets.

Freddy the pure bred Pekingese, who showed up at our gate and asked to be let in.

Leo the Chow was adopted from a humane society in Iowa, where he had been abandoned in an outdoor cage.

So many pets first discarded or lost, but then finally found.  It was a privilege to provide them with a family of their own where they could live in harmony and peace.  And now our Sam who pays back all the care we gave along the way.  I find him “a miracle” beyond compare.

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As you can tell, http://www.ted.com/ is one of my favorite websites.  It connects me with a universe of inspiring and quite often courageous people from every nation on our planet.  This connection is especially important to me because Multiple Sclerosis has made travel and my personal participation in most events difficult, if not out right impossible.  So I travel by internet and as always I am eager to share a worth-while destination with you.

If you have ever wondered why some members of our human family are more concerned about the wellbeing of others and our environment I can offer Jeremy Rifkin’s video as food for thought:

http://www.ted.com/talks/jeremy_rifkin_on_the_empathic_civilization.html/

Enjoy and share your rection with me by leaving a comment!

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