Tuesday, August 20, 2013

Multiple Sclerosis? Really?

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 I decided 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.

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.

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 said 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 15 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.

Tuesday, April 19, 2011

MS and the Insurance Bullies

Received this letter from a friend of mine that has been dealing with MS longer than I have

I am a Multiple Sclerosis patient. I was told I have to change Neurologist as He is no longer able to treat ms patients with Tysabri or Cellcept. The State of New York is making him do this. This is effecting over 300 ms patients directly as well as the good doctor.
Ecellus took this good doctor before the State board using ten of his patient files and a second opinion doctor (paid by Excellus) that said his treatments with Tysabri and Cellcept were not necessary. The State agreed and are making him stop treating this population of ms patients.
I am a Delphi salaried retiree that had all of my healthcare and benefits taken away through Bankruptcy court. I was being treated with another ms med where I would give myself a injection everyday (under this good doctor's care). When I lost my benefits, I started skipping daily doses trying to save some money by maybe only buying eight to ten months supply per year rather then twelve months. had been n this med for 11 years with very quiet ms symptoms and no major attacks. Well five months after my self "dose reductions", I had another major ms attack. I'd lost the use of my hands. Fortunately with two (usually only one Intravenous steriod treatment is needed) intravenous pulse therapies and almost 16 months later, I have regained enough to type this note.
I can tell you my Neurologist is the most competent Doctor I have ever met. He has more degrees then people have shingles on their roof. He developed the first non-invasive test for nerve function in the 70's. He is like Dr. House only square his abailties with the erascible personalty too. He truly is the reason I am not blind and messing myself in a nursing home along with most of the rest of this ms population.
The real reason Excellus took him before the board; The sum total cost of annual treatments to this population is just over $25 million dollars and that is why Excellus targeted this Doctor. This actual cost is only going to get exponentially more not allowing these treatments and altering them. Doing this will cause more disease activity and with other treatments are much worse side effects too.
I believe the State is allowing this insurance company to do this because of their political power and nothing else. The real culprit here is the Pharmaceuticals allowed to charge these ridiculous amounts for the medicines. Why isn't their more pressure on the pharmaceuticals by the insurance companies as well as the government? This is abuse of the system and the system needs to be fixed so it helps people not hurting them. That will be the real economic win too.
Thank you, MS Patient from Rochester, NY

from Todd,
I know this gentleman personally, and I don’t know that there is anything any of us could do to change this situation. I think being aware of what the bullies in State Government can do in the name of protecting us is criminal. The takeaway here is that in an era of a more caring health movement I think that the patient should have been considered first. Would it really have been that difficult to find these folks another infusion center before shutting this doctor down? Instead the government (insurance bullies are in the background) shut this doctor down and left the patients to fend for themselves. I don’t know who I get madder at the insurance companies or the government for letting themselves be manipulated.

Monday, August 23, 2010

Dragon Tattoo - Book Review

I usually like to talk about Multiple Sclerosis in this blog. Well my reading schedule is part of myself prescribed treatment. I am a firm believer in reading books over articles and online, the cognitive exercise of having to remember where you left off the day before has just gotta be good. Today I am not here to recommend a book I am going to tell you which one not to read.

The Girl with the Dragon Tattoo by Steig Larsson

I will summarize below, but first I have to say this is one of the better books I have read this year. This book has all the elements – Mystery, Deep Character construction, exotic locale etc. If the publisher had not made me so damn mad I would highly recommend this book. Here is where it all went wrong-About ¾ of the way through I realized that advertising made its way into my book. This is not an ad like you see on TV or read in a magazine, this is an insidious product placement ad. The author instead of saying laptop computer refers to an ibook (Apple product). Well you say the author was just being thorough and trying to paint a more robust scene. I thought so too until the end of the book, when they refer to a computer that had been hacked of course it was a windows machine. That is when it dawned on me that specifically naming these computers was not germane to the story but was in fact a product placement ad. I am a business man and am certainly not opposed to advertising. When I watch TV for free I expect to see ads that is my payment for this form of entertainment. However, when I buy a book there is no expectation of advertisement. My one bad review is certainly not going to hurt the author or publisher but I will never again by a book written by Steig Larsson or published by Alfred A Knopf.

Summary- Mikael Blomkvist, a once-respected financial journalist, watches his professional life rapidly crumble around him. Prospects appear bleak until an unexpected (and unsettling) offer to resurrect his name is extended by an old-school titan of Swedish industry. The catch--and there's always a catch--is that Blomkvist must first spend a year researching a mysterious disappearance that has remained unsolved for nearly four decades. With few other options, he accepts and enlists the help of investigator Lisbeth Salander, a misunderstood genius with a cache of authority issues. Little is as it seems in Larsson's novel, but there is at least one constant: you really don't want to mess with the girl with the dragon tattoo. --Dave Callanan

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
go to 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.

Saturday, July 17, 2010

Numb by Linkin Park - New Meaning to some of us

This one really struck a chord (no pun intended) What a great job and the words in this song mean something different now. I cannot take credit for this one it was posted to YouTube by this courageous person - Haley (click to read a little more)

Friday, July 16, 2010

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

Saturday, July 10, 2010

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


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