Relative MS

May 9th, 2012 by Laina Turner

A great new blog I found in my search for MS related blogs. Relative MS.

Catharsis

Posted on April 28, 2012 by John

It was interesting that I got some comments back on the post about dignity. For me it was cathartic to write. Since I’m an “old softie,” I found myself tearing up while writing it. We are all raised to think that it’s a parent’s job to take care of the children, not the other way around. There are so many mixed feelings running through your head while it is happening and it’s difficult to sort them out. You are proud that you raised a child willing to do it yet embarrassed, angry, sad, etc that it has to be done. You want to go out everyplace and do everything but are often afraid that there won’t be a bathroom that you can use or that there will be no one available to help you. So here you are a grown man who had a successful career and raised two kids now centering his life on the availability of a bathroom.

When I get thinking this way, it’s really easy to fall into a deep funk, feeling sorry for myself. It’s then when my number one caregiver Linda comes along, “smacks me on the head” and snaps me out of it. She gets me to look at the things I have and not what I’ve lost. The two beautiful grandchildren top that list. Being home and getting to watch them grow and learn is an amazing experience. To them, it doesn’t matter that their grandpa is in a wheelchair. In fact, their friends are jealous that they get to ride on the back. Usually, one is on my shoulders and the other is on the back whenever we go anyplace. It’s an experience that I would never have had if it were not for my condition. I also don’t have the constant angst and tension that I had when I was working. It’s a good thing not to have that tension ball in the middle of your gut 24/7. It was tearing me apart. Oh, I have to include getting to spend more time with Linda. Our kids call us “the Bickersons” since we always seem to be arguing about something but ours is a very special relationship. You hear so many stories about people retiring and then getting to live only a year or two together before one of them passes on. MS has actually given me a present by allowing us to spend more time together.

This list could go on forever. The point is that whenever you feel yourself falling into that funk, put a list together. There are things to enjoy that perhaps you never would have if not for the disease. Sure there are some crummy things too but there is always the other side of that coin.

 

Read blog here.

 

PasstheMSplease

May 8th, 2012 by Laina Turner

A great blog I came across –  PasstheMSplease

Gibberish

I saw this on Facebook the other day: “Every time I see a math word problem it looks like this: If I have 10 ice cubes and you have 11 apples, how many pancakes will fit on the roof? Answer: Purple, because aliens don’t wear hats.” Unfortunately, this makes sense to me!

When I was in school, math was one of my best subjects. English and Literature were my next best. Now, none of the above makes much sense when I am trying to figure something out.

Besides fatigue, cognition (knowledge acquired through reasoning, intuition, or perception) is my biggest problem. Without the ability to use the knowledge that we have acquired during our lifetime, we are at a standstill with normal activities.

We use cognition for every aspect of life. When cooking, we need to know how to read and interpret a recipe. When writing a check, we need to know not only how to write it, but how to add and/or subtract the amount of the check. When driving, we need to be able to quickly react to the other drivers around us and know the route we are taking. These are just a few examples of everyday life where cognition is important.

To those who do not have MS or other diseases that make “thinking” difficult, these things seem so natural that they often lose patience with our bumbling around and trying to do things. I would not ever wish our problems on anyone else. But sometimes I do wish some of these people could spend a few hours in our shoes so they could better understand our struggles and know that we are not purposely trying to “upset the apple cart”.

I have not driven or written a check in about two years. This may not seem like a big deal to some people, but it is a major thing to me. It means that I am giving up a part of my life because I can no longer do these things, not because I just want to give them up and let someone else handle them. To those of you that are having to give up a part of yourselves and your independence each day, my heart goes out to you. I know how you feel. It is not easy and without the love and support of my husband, I would live on that pity pot I have talked about in previous blogs. As it is, I do visit it more often than I would like!

I realized a few weeks ago that I need to write these blogs when the idea comes to mind. If not, it is lost in that hole of “never to be found again”. With the slowness of my thoughts and typing abilities at this time, writing one of these can take anywhere from an hour, to writing a little bit at a time over several days. I try to stay one or two ahead for those days I am in that nothing zone that MSers get in sometime.

I do love purple and think it is a good answer to the question asked in the first paragraph of this blog………….and aliens DO wear hats…….but I am pretty sure they are usually green……….. 🙂

 

Read original post here.

Scrambled Egg Multiple Sclerosis, being young, and other things that come to my mind.

May 7th, 2012 by Laina Turner

Read full blog post here.

Good news and bad news

So the good news is that my medicine finally came today! It’s a shot for five days of a hormone that will make my body produce more of it’s own natural steroid. In turn, hopefully making me feel like a new woman! Fingers are crossed.

Another good thing about the medicine is that it was completely free for me. It has been so stressful with all of these medical bills rolling in everyday. Last week, when I checked the mail, I said something to Vince about how there was no mail and I couldn’t believe it was a day without medical bills! Then about an hour later we heard the mail come, (the mail man must of been running late) and of course there were bills! I guess I spoke too soon.

Read full blog post here

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What does MS equal to you?

May 6th, 2012 by Laina Turner

by Lisa Emrich

What Does MS Equal To You?

MS = a twisted roller coaster, spiraling and without brakes.

I can’t recall the last “real” roller coaster I rode.  Honestly, I’m trying to rack my brain.  Was it during a visit to Disney World in 1985?  Or could it have been in a car driven by a speed demon? (That would be a figurative roller coaster, of course.)

During one ride, the anticipation and excitement about being strapped into a seat and allowing your body to be whirled through the air is intoxicating.  During the other ride, eyes are closed, feet are trying to push the imaginary brake pedal in the passenger seat, and the adrenaline rush is exhausting rather than exhilarating….read more

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Looking Forward on my own – or with a changed support system

May 5th, 2012 by Laina Turner

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by Pamela Bascio

I came across this blog post and although it is almost a year old I just felt it was right from the heart and you would find it meaningful……..

After ten years – not all happy, my husband and I are going to divorce. It’s ok. We still get along – for our kids, for my step-kids.
He’s a good person, just not a care-taker. I’m a good person, just not used to having to need someone to take care of me. And I KNOW I’ve been really more bitter since I was diagnosed with MS. But the support wasn’t always there, which led us to this point. Read More

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Life Can Be Simple

May 4th, 2012 by Laina Turner

A great blog you can read here.

To show that living with Multiple Sclerosis can be simple when we find our way of living with it.I love my family,and know that without their PUSH I could not do any of what I post on here.I do have a good support team,and that matters.So I do hope that you will enjoy my blog.And any comments are more than welcome.Along my way I hope to learn more,we are never too old to learn,we just have to have that want to,and I hope I always will.

_____________

Check out her blog!

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Introduction to MS

May 3rd, 2012 by Laina Turner

by Ashely Downend

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Multiple Sclerosis (MS) is a neurological disorder that affects the neurons in the central nervous system, causing debilitating and ultimately deadly consequences. There seems to be little known about this disorder,
and much research is currently being done in order to develop better treatment options.

It usually starts in early adulthood between the ages of 20 and 45, and the prognosis can vary (Steinman et al, 2002; Calabresi, 2004). It affects approximately 300,000 individuals in the United States (Keegan & Noseworthy, 2002). More women than men get the disease at a ratio of two women for every one man (Calabresi, 2004). read more

 

 

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Early disclosure of MS diagnosis to people by their doctors improves quality of life and psychological wellbeing

April 30th, 2012 by Laina Turner

Read full article here.

In the past, it was quite common for doctors not to tell people they had multiple sclerosis after making the diagnosis, so as to spare them anxiety or worry about the future. Even today, some doctors still avoid such disclosure. New research from Bologna in Italy sheds important light on this question. Researchers enrolled 229 people with MS or clinically isolated syndrome (a single attack not yet diagnosed as definite MS) in the study. Of these 229, 93 were unaware of their diagnosis, suggesting this practice on the part of treating doctors of not disclosing the diagnosis is still relatively common. The diagnosis was then disclosed to these people, after measuring their quality of life and psychological state before disclosure. Interestingly, 30 days after this disclosure, measures of quality of life, anxiety and depression were better than before the patients knew the diagnosis, and this improvement in quality of life and psychological wellbeing persisted over the following two years. Read full article here.

The MonSter is Real!

April 9th, 2012 by Laina Turner

Came across this post and wanted to share.

Read original post here.

Unlike a bad dream, it doesn’t come only when I’m sleeping, it doesn’t go away when daylight comes, and even when my mind is occupied with hundreds of other thoughts and I’m busy with the “stuff” of living, working, and trying to care for my family, it lurks about and, without warning, it attacks, disrupting my cognitive and physical functioning, oftentimes bringing everything to a sudden screeching halt.

The problems are real, the pain is real, the symptoms are real…even if you can’t see them.  Unlike a common cold or minor injury, it doesn’t happen and then get all better and go away.  The nerve pain that accompanies an attack is excruciating and unlike any other type of pain.  If you’ve ever had a bad toothache, just try to imagine that type of pain occurring in any other part of your body.  It can affect any body part or function at any time for any length of time.  The numbness, tingling, and weakness that often occur can mimic signs of a stroke and can be very frightening and debilitating. Read more here.

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Key Points to Understanding the Potential Causes of Multiple Sclerosis (MS)

April 1st, 2012 by Laina Turner

Interesting article. Full original post here.

  1. Molecular pieces of bacteria (mimicry) have been identified that can cause autoimmune response against nerve insulation (myelin).
  2. Accidental discovery that Fecal Microbiota Transplant (FMT) in 3 MS patients led to a reversal of the disease.
  3. Dietary changes have been reported to reverse disease symptoms in some people.
  4. Vitamin D deficiencies are widely observed across many autoimmune diseases.
  5. Abnormal obstructions in the veins in the necks of MS patients are being studied with MRI and the blood flows are being measured with Doppler MRI techniques.  Some have claimed reversal after balloon angioplasty to open the blockages.  Many trials are on the way.  This remains a controversial bit of research.

The five items above are described further below.

Professor Westall Discovers the Connection Between Gut Bacteria and Multiple Sclerosis

Professor Frederick Westall has a doctorate degree in chemistry and worked with Dr. Jonas Salk, the inventor of the Salk vaccine for polio, for over 12 years at the Salk Institute in La Jolla, California.  Dr. Salk chose Professor Westall to be in charge of the experimental development of the multiple sclerosis vaccine that occurred in the 1970′s and 80′s because Professor Westall was the first person to discover and synthesize a chemical that could induce an experimental version of multiple sclerosis in animals.  The vaccine worked in animal trials but did not perform as expected in human trials due to subtle differences between the immune systems of the animal and human.  After leaving wrapping up his research at Salk, he accepted a position to teach chemistry at Cal Poly Pomona.  After retiring from Pomona, Professor Westall has continued to self-fund his research to find the cause and cure for multiple sclerosis.  In 2006 he published the following landmark paper in the Journal of Clinical Microbiology where he discovered that pieces from a person’s normal gut bacteria could provide the irritating chemicals, known as antigens, to drive the autoimmune condition for multiple sclerosis.  By utilizing the vast genetic database of the National Institute of Health, he identified candidate bacterial species that were capable of producing the antigens that excited the immune system to attack the nerve tissue in the brain.

Molecular mimicry revisited: gut bacteria and multiple sclerosis.

Westall FC.