Tuesday, November 17, 2009

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.

Friday, October 9, 2009

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....

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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

Thursday, August 6, 2009

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

Multiple sclerosis T-shirt

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!

Monday, July 6, 2009

Is it Time for a New Doctor?

Big Disclaimer here – I am not a doctor; this is my experience as a patient only!!

You’d think this would be an easy decision. I have a tendency to approach my life decisions like I do my business decisions. If a vendor doesn’t get the job done he’s gone and I get someone who can get the job done. But a doctor to an MS patient is much more personal than that. The more I thought about this the more difficult this became, because I have not had a major episode in years. Then why would I want to replace him you ask? Well one very seemingly innocuous statement. He says- “Sir you haven’t had a relapse in a couple of years, I think maybe we should take you off of Copaxone” At first I like the sound of this (I am really tired of shots); however is this like half full? Half empty?. I think I have not had a relapse because I am on Copaxone and not in spite of it.

My mind looked like one of those movie sequences you see. Picture me walking all night…fade to the pier scene…fade to me walking down a city street… fade to the sunrise. Ok not that bad but I did come to a decision. I need a new doctor, but how does one just go get a new one? (It’s not like new shoes you know). Here is why you want to go to meetings at a local MS chapter. I was able to ask everyone I know in the Upstate chapter for the best doctor in my region. Surprisingly I received almost the same answer
from everyone. Hey this was going to be easy I’m calling this guy (no names, no hurt feelings). Again easier said then done. I called made the appointment but on my way down there I felt dishonest. I almost didn’t go in I was so conflicted. Wow was I relieved when the new doctor said he would contact my old doctor for my records. All I could picture was me writing a Dear John letter and having to deliver it (I have an active movie like imagination)

My point to reiterating this saga is to encourage you to trust your gut instinct when it comes to your health professional. I would also encourage you to contact your local MS chapter and go to a couple of meetings. The information and contacts that you can make are a valuable tool in fighting MS.

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Thursday, June 11, 2009

Multiple Sclerosis T-Shirts

MS Artist T-Shirt Sale

I really appreciate the positive feedback I have received from non MS’ers and people that are diagnosed with multiple sclerosis, in regards to an up and coming MS artist t-shirt sale. What I have not spoken to is how much this sale will benefit me. See I have an internal war waging everyday. I was diagnosed with MS in 2000 and I am a conservative. So what’s the problem you say? To tell you the truth maybe there is no problem except in my head. I find myself not telling my MS friends that I am conservative(not republican please save the nasty e-mails) also I find I do not discuss MS with my business associates. The fund raising sale I have initiated allows me to donate to a cause I am very passionate about and I get to sell something(it’s in my nature). So I really owe a big thank you to the artists and others that allow me to do this.

Last fall while surfing the NMSS site I ran across a section of artists that have MS, I was impressed with the talent of these folks. Now being a t-shirt guy I saw this art on t-shirts instead of canvas. I could sell these and make a donation to NMSS. Bing!(not the search engine) an idea is brewing. After speaking to these artist I thought they deserved to be in the revenue stream as well. Great! I was stoked (my son says that) Now I can directly help a person with MS and make a donation that will help all of us in the future. Tada- MS T-Shirts.com was born. In the coming months I will highlight each artist in a little more depth. I am very lucky to have met these folks they are very inspiring to me.

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 MS T-Shirts and help find the cure

Multiple sclerosis T-shirt
Carole Murry

Some notes from the Karolina Wojdak

"Although i never attended any art classes, I've been drawing since I was a little child. And now I know where were my visions coming from.
I've been diagnosed with MS at the beginning of '07, when I utterly lost control over my right arm and eyes, the neurologist assumes I've been ill since '02. I'm still trying to regain my drawing ability, by the help of my family and friends I know I can't give up trying - drawing is my whole life.
With my art I'd like to help MS people like me - to finally get the normal life, to get the cure."

Friday, May 29, 2009

MS Story with a Happy Ending Part 2

This is my to hell and back reiteration part 2;

to read MS my Story Part 1

The News

The Neuro I had first visited came to my room and politely told me in his heavy Irish accent that I had Multiple Sclerosis. And I was actually happy to hear this after thoughts of tumors and such. I was promptly started on intravenous Solu-Medrol. After a few days on this powerful steroid I was able to kind of see again and the first thing I see is Maury Povich. Here comes the really frustrating part I could not change the station because my hands were not strong enough, to shut off the ignorant urban slang coming from the TV. Ah well the nurse meant well I looked bored and she left the TV on for me.


Thinking about a life without the use of my legs or 20/20 vision was not helping my mood or willingness to really try at rehab. As I made small gains in the use of my extremities, I was reminded of what I had lost by 80 year hip replacement patients walking faster than me. I am kind of a black and white logical sort of person but even when it looked obvious that I had contracted a debilitating disease I had yet to admit it to myself. I remember at one point asking the Doc if I could go home tomorrow and he looked at me with a very serious face and said you know you have something more serious than a cold. About then it hit home in the back of my head some place that I wasn't going to figure my way out of this as easily as I thought. So I knew I had something serious but I held on to my denial because it was my lifeline back to the way I was. I needed that because the outlook wasn't great the Doc told my wife I might not get any better than I was currently. So denying that I would not stay in a wheel chair and I could work again was what I needed at that point.

Maury and the Great Escape

OK I promised a Happy Ending (not the naughty kind) so let's get to it. At this point I was hoping to have a dramatic moment to speak about because it makes for a better story. As these thoughts bang around my head I now realize it was just the combination of having my family around me and hanging on to my denial. Now being in denial is not a recommended mental state but it was working for me. I used my denial like motivational tool and that kept me from becoming depressed which didn't work for me at all. I thought if I refused to be disabled then I would not be (ah if it were only that easy). I had physical therapy (pt) at home 3 times a week and I was making small gains which I was able to build on. Taking those first few steps as cliché as it might sound was the key to making a recovery. Now here's where Maury Povich comes in again. I had just finished PT and was feeling pretty good. And again the TV was left on for my amusement and yes again Maury was on TV speaking to the legalities of if a brother and sister move away from the hills, are they still legally married?(I'm kidding but it was something equally as ridiculous). However this time my hands were strong enough to work the remote. But damnit the remote was across the room and so was my cane after PT. With a will of steel and burning desire to change the station; I got up took the 5 or so steps retrieved the remote and banished Maury from my TV once and for all. Now this might not sound so amazing but it was a huge step, and at that point I never looked back. My recovery came rapidly at that point because I think I tried even harder than before. Now what I really wanted to do was to get back to work. My T-shirt shop was not far away but they had asked me not to drive for obvious reasons. But luckily they had not taken away my license just hidden my keys. After seeing the coast was clear I did a few John Belushi moves (aka Animal House), and then made a break for the car and sped off to my shop which I hadn't been to in months. Thank God I had some good employees and good friends they kept it running and even picked up business that wasn't there before.

The Happy Ending

I still wake every morning and walk like the tin man from Wizard of Oz, but after my second cup of coffee most people would not know there was anything going on with me. I still have a few bad days but they are few enough that it has not been a problem. The shop has grown to a 25 person shop with embroidery, screen printing and digital services. But the real happy ending was staying home long enough to realize I needed a balance between home life and work. So I don't know if you can call MS a gift but it did help me set some priorities.
Buy a Shirt,Help an Artist,Find a Cure.

Artists that have Multiple Sclerosis have contributed their time to createto t-shirts like the one below
Please Visit the  MS T-Shirts and help find the cure
Multiple sclerosis T-shirt

Some notes from the Carole Murry-
MS is a thief. It sneaks around in the night and takes what is most valuable to you. It can take your strength, your intellect and your abilities. But the one thing that it cannot take, unless you give it willingly, is your hope. Through the National MS Society and projects like this one, we can keep hope alive to one day find a cure for this devastating illness. This painting is special to me because it reminds me to keep looking to the future. To a time and place that is yet unknown. To a day when there will be hope for people who are living with MS. Stay hopeful. MS does not have to take our future.

Thursday, May 28, 2009

Multiple Sclerosis Story with a Happy Ending

The Tingle

I awoke several days in a row with a pain at the base of my neck and tingling sensations in my hands(sound familiar). Of course I was a male in his 30's with that feeling of invincibility; I dismissed it as overworking. I will freely admit I was and still am a workaholic. It was not unusual for me to work 80-100 hours a week. I often wonder if that wasn't my trigger (doc says no). The pains and sensations would not go away so my very smart wife convinced me to go get it looked at. I begrudgingly arrived and waited what I thought was too long (he was worth it), now after about 15 minutes in his office he looked at me and suspected MS. What a shock! I thought I would hear about a pinched nerve and that I should get some rest. I was convinced as I left the office he was overreacting.

Crappy Morning

I awoke a mere 7 days later unable to walk straight and I threw up every time I made the attempt. Now my wife knows me, she called me out of work and then called an ambulance. See I have never called out of work (I'm a workaholic remember), so she knew something bad was going on.

Smart woman because within a short period of time I could not walk at all and at about the 4 hour point most of my systems were beginning to shut down.

Scary Hospital Stay

They moved me from ER to a room because it really looked like I would be staying a few days.

The docs started a battery of tests looking for things like cancer or brain tumors and other nasty stuff. Knowing what I know now I don't blame them MS normally does not present like this. I was unlucky to have my first good size lesion on a nerve center that sent crazy signals to all sorts of places in my body. I couldn't see, walk, eat or any number of bodily functions I don't want to talk about. They decided after seeing a spinal scan which was lit up like a Christmas tree (that's the phrase that was bandied about) that I needed a spinal tap. Spinal Taps are scary enough but I was so out of it I don't even remember the procedure.

To be continued....

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

Artists that have Multiple Sclerosis have contributed their time to createto t-shirts like the one below
Please Visit the  MS T-Shirts and help find the cure

Multiple sclerosis T-shirt
Jenn Shelton

Some notes from the Jenn Shelton -

My artwork became very important to me after I became diagnosed with MS in 2007. I used to have a career path in Finance,
but now concentrate on making abstracts using acrylics as my medium.
This painting was done on an oval canvas shortly after my diagnosis.
It expresses the various sensory symptoms and what we sometimes have to deal with. The orange represents the desire to find a cure and is used by the NMSS.