Celebrate World MS Day

May 30th, 2012 by Laina Turner

The MS Project

 

The MS Project is a collection of things created to raise awareness for Multiple Sclerosis. Consisting of a book, a website, apparel, and an iPhone app these elements work together to bring more attention to the disease, teach people, and create a strong community.

 

The book – Volume 1 was released in March, 2011 and Volume 2 was released March 2012. The books are a collection of stories written by people afflicted by Multiple Sclerosis, or who have loved ones afflicted. This book is meant to be informational regarding the disease as experienced by real people and to showcase the amazing strength people find when facing adversity.

 

The iPhone app – is a tool to create awareness for Multiple Sclerosis. Connected to The MS Project website the app will include a feed from the blog to provide access to the MS community and a wealth of knowledge.

 

The website – is a social networking site where people passionate about raising awareness for the disease can become members and get to know one another. The goal is to create a community to provide support, awareness, and motivation to people within and outside the community. You can currently access the website at http://www.themsproject.com.

 

The MS Project, the book, Volumes 1 & 2, are now available for – purchase on Amazon. Volume 1 Volume 2.

Living Well With MS & Disabilities: Ellie’s Blog

May 29th, 2012 by Laina Turner

Another great blog I came across. Read here.

 

WHY BULLY A PERSON WITH A DISABILITY

 

Or why bully anyone at all. I’ve never understood why some people belittle or bully other people. But when they do it to a person with a disability to me it’s beyond being mean it’s cruel.There was a recent article “Children With Autism Are Often Targeted By Bullies ” in NPR recently . http://www.npr.org/blogs/health/2012/04/23/151037898/children-with-autism-are-often-targeted-by-bullies?ft=3&f=111787346&sc=nl&cc=es-20120429

This article is about a personal experience of a child with Autism who wanted to make friends. But all she found in return to her overtures to be friendly was to be bullied back. Her concerned mom pulled her out of the school, quit her job and home schooled her for two years. Then concerned about her daughters socialization needs placed in a school for kids with autism. And it’s been a successful fit. Her daughter is happy and making friends.

 

Read full post here.

The Five Worst Things I Have Done Since Being Diagnosed with MS by Marie Cooper

May 25th, 2012 by Laina Turner
I came across this amazing post. Please read full post here.
Although I am a relatively smart person, I can admit to having done some pretty dumb things in my life. A lot of the dumbest things came after finding out I had MS. I thought if I listed the top five, it might save someone from repeating my blunders.
MISTAKE # 1:  Not immediately making long-term financial plans.
I was eight weeks into a brand-new job in 2005 when I was hospitalized with transverse myelitis, which was followed by a diagnosis of MS. I should have looked into disability right away, even if I wasn’t ready. I should have learned everything I could have about it.
Instead, I went back to work way too soon and focused on keeping my job instead of maintaining my health.
Despite worsening symptoms that were seriously compromising my mobility and function, I kept pursuing a high-stress career that I was both good at and enjoyed. I ignored the handwriting on the wall regarding my own future.
After two frantic years of working 12-hour days, being on call 24/7, determined to prove that MS would not impact my performance, my position was eliminated and I was out of work. Before finding a new job had never been a problem. But things were complicated now.  I couldn’t “pass” any more. Now I needed assistive devices, a cane or a walker or more frequently, a wheelchair, to get around. Huge red flag for hiring managers, although, of course, there is almost no way to prove that.
read full post here.

World MS Day 2012 – It’s almost time

May 18th, 2012 by Laina Turner

World MS Day  is coming soon on Wednesday May 30th, 2012. If you’re not familiar please go check the site out and see how you can be one of the 1000 faces.

 

Kiss Goodbye to MS

May 17th, 2012 by Laina Turner

I came across this amazing site called Kiss Goodbye to MS. It’s an initiative based out of Australia that works with people to raise money to go towards MS research and services for people with MS.

They have some amazing things going on so I encourage you to check them out.

 

Amy Winehouse’s – mum talks about having Multiple Sclerosis {Part 2}

May 16th, 2012 by Laina Turner

Amy Winehouse’s – mum talks about having Multiple Sclerosis.{Part 1}

May 15th, 2012 by Laina Turner

Love My MS Life Finding happiness and hope every day while living with multiple sclerosis.

May 10th, 2012 by Laina Turner

I Really Need to Pee!

read original post here.

Let’s talk bladders. It’s a big topic on my mind right now because in the last few weeks I’ve been feeling the effects of bladder dysfunction — an MS symptom that’s plagued me since my early 30s.

I’ll admit that this isn’t something I love to discuss, but it’s an important issue because so many people with MS deal with it. The National MS Society says at least 80 percent of people with multiple sclerosis have bladder dysfunction. It’s invisible and uncomfortable. And unless you experience it, it’s difficult to comprehend the physical and emotional toll it takes on you.

Before I get into my personal story, here’s a quick explanation of bladder dysfunction — if you don’t mind some nitty gritty details. When people with a normal, healthy bladder feel like they have to pee, they can hold it until they know that they really gotta go. Then they can hurry to the toilet and…read more.

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.