RIP Annette Funicello

April 9th, 2013 by Laina Turner

When my mom was diagnosed with MS the only two public figures who has come out about the disease at that time were Richard Pryor and Annette Funicello. My mom identified more closely with Annette on a personal level. Being same age, gender, and having that wholesome fifties thing going on. She felt some comfort in the fact that someone like Annette had the same dreaded disease she had.

I was sad the last few years watching Annette’s decline and while I feel for the loss her family and loved ones are feeling with her passing I am happy to know she is in a better place and maybe my mohter will fin

 

 

http://www.cnn.com/2013/04/08/opinion/leydon-annette-funicello/?hpt=us_c2

http://www.npr.org/2013/04/09/176640353/annette-funicello-dies-at-70

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The MS Project volume 3

November 15th, 2012 by Laina Turner

Thank you so much for your interest in being a part of Orange is the new pink – raising awareness for Multiple Sclerosis.

In 2011 & 2012 we put out a compilation of stories by people with MS about their journey with the disease. Volume 1 came out on paperback and an ebook. Due to cost Volume 2 only came out in ebook form. We are excited to announce that Volume 1 will be available on audio at the beginning of December!!!!!

We are now ready to start compilation for volume 3!!!! Due our March 2013!

The premise of the book will be the same. The book is meant to educate, inform, and inspire.

If you feel you have a great story to share see below for what I need for you.

• Your story (can be of any length)
– please format in Times New Roman 12pt font
– double spaced
– indent paragraphs 5 spaces
• Brief bio
• Headshot (for website)

Submissions should be emailed to [email protected] by Feb. 28th, 2013.

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.

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.

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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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

Download The MS Project iPhone app

 

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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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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.