MS don't have me.

This came from one of our friends in PA. I don't know about all of you but I can identify

I have MS,

MS don't have me.

They told me I have MS today,

I just wanted to cry I had nothing to say.

Now I know why I am tired all day long,

this is why I have to stay strong.

My life as I know it has changed,

now everything in life I do I have to re-arrange.

Everyday I have my ups and downs,

but my MS I wear as a crown.

dont be afraid to go out,

let everyone know what MS is all about.

Come visit us at our MS T-Shirt site

Beating the Heat in Spite of Multiple Sclerosis

Can't stand the heat get out of the kitchen? Doesn't really help when everything you want is in the kitchen. That is my pun-metaphor-cliche referring to this darn weather keeping me from going outside. It was particularly difficult to explain to the kids why daddy couldn't come to the soccer game. That is not a problem anymore since the kids are older and not in youth soccer any longer. However I still would like to go outside during the summer. Thankfully I have quite the collection of heat beating gadgets. My favorite and least expensive is the Misty Mate (pictured above) This inexpensive device has saved the day many times for me. It works best in high heat and lower humidity as it depends on evaporation for the cooling to work. At under $30 it is well worth it.

Cooling Vests

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There are a staggering amount of choices in the marketplace now, the picture on the left I can vouch for as I used it in Lake Mead a few years ago. It did a great job for several hours in 90 degree heat. I bought the one with replaceable cooling packs(I kept them in a cooler), which was handy for the extra trip to the Grand Canyon that day. The picture on the right is made by Artic Online, I have not used it, but my Facebook friends speak very highly about it. It looks very well made and I was impressed with documentation on the site.

CoolMax Polo

Not only do I embroider these quite often, I wear them too. They really work! As with many of the cooling products they do not work as well in high humidity. Manufacturer description - CoolMax , a Great Way to Keep Your CoolLook and feel comfortable in CoolMax. Our newest polo lets you dress for dinner without sacrificing vacation relaxation. Made of the comfortable, moisture-wicking, wrinkle-resistant CoolMax knit

Since skiing is not an option anymore for me and it is cold here in NY. I spend way too much time inside during the winter I refuse to spend all summer inside too. If anyone has any suggestions for their favorite product please leave it in the comments below

MS Hug - Not the good kind

I woke up one day last week with my now patented "tin-man" walk and was also greeted with an old symptom referred to by many as the MS Hug. By the way this is not the friendly hug you would get from an old friend, it is more like a boa constrictor is going to have you for breakfast. I have never been able to find a great deal of information about this symptom, nor have a seen a treatment for it. For those not blessed with this symptom it is a tightening of the Chest/Abdomen area and for some people it can be quite painful. Now the good news for me at least was that this was not a signal for a full relapse, it was a reminder that I worked a little too hard yesterday . So with a little rest I am feeling much better today, not good enough to try out for the Yankees, but that will have to wait for another day. My old neuro(boy I miss him) called it the "girdle", since I am not a cross dresser I could really do without this symptom. Not every MS'er has this symptom and I have run across many who have never heard of it. I went on an Internet hunt to try and dig up some more info. Here are a few helpful articles I found.

Tips for Managing the MS Hug - This one was chock full of good tips I have not seen collected in one article. Great stuff for avoiding and not getting the Hug in the first place.

Multiple Sclerosis Hug or Girdle This person gets it. And it was the only place I was able to find a why. Yes I am a little like Curious George I need to know why. Exert -

"There are tiny muscles between each rib, called intercostal muscles which basically hold the ribs together, but also give the ribcage some flexibility; it's when these muscles go into spasm that we get the MS hug, a friendly description of an extremely uncomfortable and often painful symptom."

MS Hug by Dr. Stachowiak - Great Overview I forgot to include in my first version

If any of you out there have found another tip please post it in the comment section

And now is time for my shameless self promotion but with a cause

***Listing now includes 2 stickers for $3.75****This is a 4' x 6" Bumper Sticker that we sell in the store, and it has become my favorite since it conveys my attitude about multiple sclerosis(No I am not mad at Mississippi) You can purchase one of these stickers by clicking the image below or by clicking the "Buy Now" button below that. We make monthly donations to many chapters and the National MS Society

Ok with having Multiple Sclerosis in 2010

Well I'm not really happy about this disease(full disclosure time) and I would not wish it upon even my enemies. I am glad about the progress of treatments and support that is available in 2010. My DX came just about 10 years ago now(my saga), at that time there was just 3 main drugs available. Here Todd choose A,B or C (Avonex, BetaSeron or Copaxone). Betaseron seemed to work for about 5 years and now I am on a daily injection of Copaxone. There also was little in the way of a support system in place. There were some small groups that only met once a month at my local chapter, but I felt there should be more.

Fast forward to 2010 and I am happy to report that there is a lot more options and between what is available through the MS Society and online resources I don't feel so alone anymore.

Want to talk to MS'ers?

MS Society-

I really was quite shy after my initial DX, I just couldn't seem to bring myself to talking about this disease and how it affected me and my family. What I came to realize was I couldn't talk to anyone about it because I was still in a state of denial. I give credit to my local MS Society for reaching out to me and inviting me to a men's group meeting. I really enjoy meeting and talking to others now. I think since I have been able to talk about it, I deal with it better. I highly recommend getting involved with your local chapter.

Facebook -

There is a very large community available here. If you are wheelchair bound this is a great way to interact with other MS'ers. Get started by going to www.facebook.com, sign up and just do a search for multiple sclerosis. You will be presented with a very large choice of people and groups. Take your time it can be a little overwhelming, but it is worth the time to learn your way around. I really appreciate all the facebookers who lift me on a daily basis.

This is MS -

I have been to a lot of forums, generally I found that you had to go along to get along. I found this forum to be very refreshing in that there are a lot of actual conversations going on. A sharing of ideas and that occasional pick me up you get from a kind word.

This is by no means a finite list, just the first 3 that I like. If you prefer more reading than interacting I love 2 sites in particular - Stu's Views and The MS bloggers over at the Buzz.

Have a site that you love to visit? Please post in the comments below. Also please visit our t-shirt site to benefit MS

Have a Great Day

Don't get Mammograms until you are 50?

We were told today that women don't need a mammogram until they are 50. I have a lot of friends that are women, and to risk their health to save a few bucks really concerns me to say the least. What bother me even more is that when you connect the dots our health care system is in jeopardy.

Connect the Dots

• Government run agency makes a recommendation that will save money
• Government wants to run health care to save money
• Government health care will adopt this policy

If my bullet points are correct then it is a safe to assume that mammograms will not be covered under the age of 50. That infuriates me !! Lets take it just one more baby step further. What if they decide that the current disease modifying drugs for multiple sclerosis are not cost effective. Will I no longer have the ability to afford a drug that has been proven to stave off this debilitating disease .

I am all for more people being covered, I am all for cutting costs in our mammoth health care system. Yes we have very expensive health care in America, but it is the best in the world. When someone gets sick in the world, where do they want to go for treatment? I hope I am wrong but I have yet to see a government agency outperform the private sector. Let's all hope that common sense prevails when it comes to these policies.

Informational link to a Times article

Reading is Fundamental

Reading and Multiple Sclerosis

The scariest part of being diagnosed for me was the possibility of losing any mental faculties. Now so far (knock on wood) I have remained stable and even gained a few points based on the neuro-psych tests i have taken. I attribute my scores to doing regular brain work outs. In my opinion reading and working on puzzles are what slowed, stopped or possible reversed some of the damage that had been done prior to my starting treatment. The purists will say there is no reversing damage from MS, I agree but I think I have found a work around. By the way I firmly believe in beginning medical treatment as soon after DX as you can. Reading is no substitute for seeking medical treatment. You can do some research here that supports my opinion that reading can create new neural pathways.

Books vs Articles

My first few years consisted of reading as much material as I could get my hands on. What I didn't realize was in my zeal to absorb as much as I could, I was reading a lot of articles. probably because I could read them quickly and get another one. After a few years I felt as if I should be further along. Quite by mistake I picked up a book before bed and fell asleep reading, now the very next evening I started reading but with some difficulty. I was becoming so frustrated I almost put the book down for good. What dawned on me was I was not struggling to read, it was my inability to process what I read the night before and start reading where I left off. That was my light bulb 6 years ago. With practice I was able to retain the storyline from the night before, I have been reading every night ever since. I believe that this nightly mental exercise is helping all my cognitive abilities. Although there are some days I get out of bed a little slower, I feel sharper mentally than I have in years.

Free Bonus

All the reading I have done with is with the intention of keeping myself sharp. An Added bonus that I did not foresee was the feel good factor I like to call it. There is the escapism that comes with reading a good book. After being bombarded with the daily grind of work, bills, health care, a daily shot etc.. It is nice to just escape. Many others have spoken to the healing powers of positive attitude. Reading helps me keep my positive attitude by escaping once an evening....

Buy a Shirt,Help an Artist,Find a Cure.

Artists that have Multiple Sclerosis

have contributed their time to create

t-shirts like the one below

Please Visit the Art to Shirt Store or

go to MS T-Shirts and help find the cure

Reduce Stress and help MS Symptoms

I traded a couple of posts with my Facebook Ms'ers last week, and it reminded me of a grouping of symptoms and the trigger. For me and lots of others stress can trigger things like blurry vision, additional tingling, and my personal favorite the MS hug. The MS Hug or the girdle as my old neuro used to refer, is a tightening in the chest and abdominal region. Here are some of my tricks to reducing stress, these are the ones I use. I’m sure herbal tea and mediation and such work as well if not better, but I can’t meditate in my office.


1) Do not procrastinate - Yes I will admit I was the king of procrastinating and I found myself always stressed about everything, at some point a light bulb went on that said just get it done when presented(ok obvious but it works)


2) Make your plans the night before or in the morning - If I start the day with a game plan the day seems to go easier


3) Refrain from coffee and other stimulants - Ok guilty as charged I believe in step 3 but this is where I stumble. I did however go to HalfCaf (I mix half caffeinated and half Decaf in every pot)


4) Count to 10 and let it go - It is probably not worth hurting your body over.


5) Look at the big picture - "Don't sweat the details" cliché but true.


6) Pay your bills online - Not for everyone but I find it easier to click than write


7) Read a Book - This can take you out of your stressful environment and I wholeheartedly believe it helps re-establish neuro pathways


8) Find some solitude - even if you're at work ,take a walk and breathe

Buy a Shirt,Help an Artist,Find a Cure.

Artists that have Multiple Sclerosis have contributed their time to create t-shirts like the one below
Please Visit the Art to Shirt Store or go to MS T-Shirts and help find the cure

Some notes from Michele Levani

"From the time I was a small child, I knew that I was an artist. I loved rainy days at school because that meant recess would be an opportunity to create art! Many times my school teachers would have to stand and watch me draw because they wanted proof that I was not tracing. Throughout my life, art has defined me. When I first became ill, my ability to create what I saw in my mind seemed impossible. I felt that I had lost myself. Because of the encouragement of my family and friends not to give up, I began exploring other mediums and subjects. Today, I feel limitless and more inspired to create. My art still defines me, not my illness!
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