Thursday, February 28, 2013

Carnival of MS Bloggers #134

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Ignorance is Bliss
by Alison of Beauty and meaning in a broken world

When I was 28 I was living up a steep flight of stairs, and I noticed that my one leg was weaker than the other. It carried on for a while so I went to the doctor to have it checked out. The doctor looked puzzled and told me that if it carried on she would like to have me tested for MS. Well, I was horrified and felt that she must be a terrible doctor, rather than thinking that it may be true. For of course I could never have MS, not me! The obvious course of action for me was to never see her again }: (

I then forgot all about it.

Well of course I was wrong and she was right, but in some ways I am glad that I didn't know until my 40's as there was not much that could have been done back then and it saved me a lot of anxiety. I didn't have many problems, mainly tiredness. I found it hard to ski or skate but I just thought I was unco-ordinated and it wasn't a problem. I also suspected that I had a problem with my immune system, but put it down to having had a bad case of mono as a teenager.

Now MS is affecting many things and I have come to terms that this has happened to me. But I am glad that I had less to worry about and that I was able to tackle some other tough things while oblivious to the time bomb that was ticking away. I do feel for those that have know for much longer and have had worse symptoms than me. MS can make life such a struggle and I know that I have been spared from something that could have been much more difficult.

This concludes the 134th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on March 14, 2013. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, March 12, 2013.

Tuesday, February 26, 2013

Vitamin D Deficiency and RA

Reduced vitamin D intake has been linked to increased risk of developing RA and vitamin D deficiency has been found to be associated with disease activity and musculoskeletal pain in patients with RA.  In a recent study, researchers evaluated vitamin D status in 44 patients with RA and looked for any relationship between vitamin D serum levels and disease activity.  A control group of 44 persons was evaluated as well. 

Vitamin D circulates in the body in two forms.  The liver converts vitamin D to 25-hydroxyvitamin D3 [25(OH)D3], also known as calcidiol.  The kidneys convert calcidiol to activated vitamin D, also known as 1,25-dihydroxyvitamin D [1,25(OH)2D] or calcitriol.  When measuring vitamin D levels in the blood, the recommended test measures serum concentration of 25(OH)D3, reported as nanomoles per liter (nmol/L) and/or nanograms per milliter (ng/mL).

Persons who have serum concentrations of 25(OH)D3 less than 12 ng/mL are considered deficient in vitamin D.  Levels between 12 and 20 ng/mL are considered inadequate in healthy persons.  Greater than 20 ng/mL is considered adequate in healthy persons.  According to NIH, levels greater than 50 ng/mL may cause undesirable adverse effects.  However, some rheumatologists (including my own) recommend serum concentrations between 50-80 ng/mL in patients diagnosed with autoimmune disease.

Read this post in its entirety:
Vitamin D Deficiency Associated with Disease Activity in RA

Tuesday, February 19, 2013

Hearing Problems and MS

When one experiences prolonged exposure to sounds greater than 85 decibels, the tiny hairs in the ear which help transmit sound can become permanently damaged.  So I have had a good excuse for any “what did you say?” moments.

But I’ve noticed something which has changed since I developed MS.  I can’t hear well although I have extraordinary hearing.  Doesn’t make sense, I know, but it’s true.

Let me describe what it feels like.  Sound waves traveling through the air that reach my ears first are the sounds which I hear most prominently.  If the TV is on and you want to talk to me, then you’ve got to talk more directly to me and much more loudly than the TV so that your voice reaches my ears first.
Read this post in its entirety:
Turn it Down Please: Hearing Loss and MS

Thursday, February 14, 2013

Carnival of MS Bloggers #133

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Can A Cold Day In Hell Be Possible?
from Paul Pelland's Endless Road Tour

I’ve been told to go to Hell so many times, you’d think I’d own a time-share there.

Like most people diagnosed with Multiple Sclerosis, I fear going to Hell mainly because I can’t tolerate the heat here on Earth.

Temperature effect on patients with Multiple Sclerosis is called Uhthoff’s phenomenon, first described in 1890, by Dr. Wilhelm Uhthoff.  An elevated core body temperature, even as slight as one-quarter to one-half of a degree can further impair the ability of  already compromised nerves to conduct electrical impulses, resulting in temporary worsening of MS symptoms. Core temperature can rise with hot weather, exercise or activity (vacuuming, ironing, grocery shopping, doing the dishes, folding laundry or watching Grey’s Anatomy are big triggers for me), sunbathing, hot baths, emotions, stress, fever or illness, catching on fire, or anything associated with raising the core body temperature.

The heat  stops the nerve fibers from working properly, especially if the nerve or myelin insulation has been damaged.  The nerves are supposed to allow the brain to send messages to other parts of the body.  Remember, in Multiple Sclerosis, the insulation or myelin sheath and the nerve it protects have been chewed away leaving scar tissue. At normal body temperature, a message barely gets through the damage pathway, and when heated up, the message will almost certainly fail to make it through. Therefore, symptoms usually get worse. If my head had fuses or circuit breakers, when I overheat, they would trip or blow. Cooling down resets my circuit breaker. This is usually not a sign of new damaged areas, and is just a temporary problem. By cooling down the core temperature, this temporary worsening of symptoms goes away.  These temporary attacks by heat as well as similar ones brought on by fatigue are called pseudo-exacerbations.

By now you can see why staying cool for me and others with MS is extremely important. My issues are mostly cognitive, and a hot headed biker who doesn’t know his own name, or has trouble remembering if he should put his feet down at a red-light or not, might be a quite dangerous.

Staying cool, and controlling my core temperature while riding means staying alive.

The word cool has been used to describe many different things over the past few decades.


In the seventies, you were cool if you said, “Dig it”, wore earth or platform shoes, bell-bottoms or anything tie-dye.  You were cool if you had a muscle car with an eight track player and CB radio. Cool was Smokey and the Bandit, The Fonz, Rocky Horror, Atari, pet rocks, lava lamps, Walkman radios and streaking.

You were cool if you listened to Aerosmith,  Alice Cooper, Eagles, Fleetwood Mac, Billy Joel, Elton John, Led Zeppelin, John Lennon, Pink Floyd, Bob Seger, Bruce Springsteen, or The Who.


In the eighties, cool was chewing globs of Hubba Bubba bubble gum with a Mohawk, Rubik’s cubes, big hair, leg warmers, sweat bands, parachute pants, NIKE’s,  black Reeboks, or tucking your 501 Levis into the tops of your unlaced Timberland Boots. You were cool if you had a camcorder, played video games (Nintendo, Pac Man, Game Boy), or used the phrases, “Where’s the beef”, “PSYCHE”, “NOT” or sang the Funky Called Madina.  Cool were the California Raisins, skate boarding, baby on board signs and pretending to, ”Just say no”.

Arsenio Hall, David Hasselhoff, Erik Estrada, Gary Coleman, Heather Locklear, Andrew Dice Clay, Bobcat Goldthwaite, Eddie Murphy and Sam Kenison were cool. Cable was in full swing, MTV was a mega hit. Slam dancing, lambada, vogueing and break dancing were cool. Records were shattered by the sales of CD’s. The bigger the ghetto box, the better.  ”Is that a car phone antenna?” COOL! 


In the Nineties, cool was Tae-bo, in-line skates,  tattoos and body piercings, Fresh Prince of Bel Air, rat tails  and AOL chatrooms. The cool actors were Michael Douglas, Joe Pesci, Tom Hanks, Tom Cruise, Sigourney Weaver, Meg Ryan, and Michelle Pfeiffer. You were cool if you could dance the Macarena without spilling your beer. Grunge was cool and Gangsta too.

The cool music artists were Mariah Carey, Boyz II Men,  Selena, Hootie & the Blowfish, Alanis Morisette, Janet Jackson, Garth Brooks, Celine Dion, Madonna and the Spice Girls.


What is cool is forever changing and  staying on top of what is in and what is out, what is hot and what is not, becomes less important to most of us the older we get.  I have no idea what was cool in the 2K’s, I guess being cool doesn’t really matter to me anymore, except when I’m riding.

I Really Want to be a Cool Biker

Bikers may be considered cool, but a running motorcycle is very HOT.  How hot? Open the hood of your running car in the summer and sit on the engine. I don’t care how fast your spouse drives around, your ass and thighs are going to burn.  Even riders without MS need to stay hydrated and cool. Here is a great read from the IRONBUTT magazine  regarding riding in hot weather.

As someone who rides with full gear (see my last post here), riding suit, boots, gloves, full face helmet, anytime the weather gets above 75 degrees, I have to be careful. If I get stuck in traffic at any temperature above 40 degrees, it could begin to effect my symptoms. For quite a while I have been using a little trick  when the temperature creeps up and my memory starts to go to mush.  When I am not looking, I switch the ambient temperature reading on my dashboard to Celsius. Instant cooling! It seems to work for a while, but lately I’ve been catching myself doing it.  Another trick I learned years ago was to toss my helmet in the ICE cooler outside gas or convenience stores when I stop for a break. Ten minutes on ice really can help out for a while, but not sure what my sweat dripping, bug splattered brain bucket does to the ice in the cooler.

Riding a million miles, I really needed to find a better system.

There are many commercial options for staying cool. I have tried many different types of passive or phase-change cooling garments like ties and vests, the type you soak in cold water, or that use frozen cold packs, but as I tend to ride many hours at a time, They just didn’t work. I need a product that would last for many hours on end, without a lot of fuss or maintenance.

I think if BMW twins can finally be allowed to get a liquid cooling system, by Jack, I should be able to get one too.  COOLSHIRT is the world leader in personal cooling, offering systems tailored for emergency personnel, industrial applications, athletes, race car drivers, pilots, motorcyclists and surgeons.  Their therapeutic division Miller Therapeutic Cooling Products, was one of my very first sponsors and will indeed help me reach my million miles for MS. I received a COOLSHIRT  personal cooling system recently and as it is winter, have had  a little difficulty giving it a real test.  The idea is a fairly common one, cold liquid circulating around a hot surface, removing the heat from the surface and flowing back to the cooling source.  All of our cars use a radiator, and the COOLSHIRT system functions very similar. The system contained a 24 qt cooler with a circulating pump, insulated hoses with automatic shut off, and quick release connectors to an anti-microbial moisture wicking compression shirt. The shirt has 50 feet of medical grade tubing sewn right into it.  Here is a video  from Modern Marvels on the History Channel. For motorcyclists, they have fanny pack systems, backpack systems, smaller thermos systems, as well as a 12 or 24 qt system like mine. I picked the bigger cooler because I will have plenty of room for it on my touring bikes, and when filled with block ice, it should give me 6+ hours of relief. Until they have an affordable bike system that  that doesn’t require ice, this is my best option. I’m sure I will add to this after the summer season, but I just had to test it out!

Here is my system.

Paul's new cooling System

And on the bike, the testing really wasn’t fair, I did stay very cool though, I didn’t even have to turn it on.


I felt as though ice runneth through my veins,  even though I never put ice in the cooler. This winter is really getting long. I believe Winter is just a season created entirely by big box stores to sell more ice melt and shovels. I thanked the officer for the escort home, and promised to check the weather forcast next time.

I thought long and hard how I could simulate riding in hot weather, and holy blazing saddles, I had a a great idea. In order to really test the system, I needed to get HOT.

cool9My first brilliant idea was to sit and type this post in front of our home’s heat source, a Jotul wood stove. The stove temperature reached 500 degrees, and I sat for half an hour in front of it before noticing my boot sole melting. I used a 12 volt power source to run the cooler, and had a bag of ice and water in it. Fully suited up, I never overheated or felt my symptoms were getting worse. It kept my core cool, and the ice was not even melted during the short test.

Brilliant idea #2 for simulating getting over heated involved waiting until the lifeguard was no longer on duty, and possibly a couple of Sam Adams. At 103 degrees, a hot tub clearly would simulate a hot motorcycle ride, wouldn’t it?

I also had to wait until my neighbor went to work, as explaining why I was in their hot tub at all, would have been hard enough.


Despite this brilliantly JENIUS idea of how to test the cooling system, the hot tub test was a semi epic fail, due to not remembering to hook-up the cooling system prior to the conclusion of the test  as well as destroying my notepad with all my observations which was in my hip pocket. I spent over an hour just covering up the melted snow prints that suspiciously led back to my house.

Brilliant idea #3 would involve not only a heat test but also a stress test with full cardiac work-up. I did wait until the Aerostich suit was dry, but the boots were still a bit squishy. This was fool proof and possible fully legal. The system was running with ice cubes and water, I suited up and hit the treadmill. In normal exercise attire, I usually can jog a mile or two before really getting overheated.  In full heavy riding gear, I should have lasted about one minute before summoning the EMT’s. I strapped my emergency contact information onto my dog, and went at it.

Snapshot 3 (2-10-2013 12-11 PM)
I was able to jog as much as I do in shorts and sneakers before taking a break, and that was quite amazing! If you have never seen a Pug applause with joy you have not witnessed a happy dog. The COOLSHIRT system will be a great addition to my summer riding and as long as I get ice before I have reached the point I need to cool down, I should be ok. Knowing the ice will last for many hours in the large cooler lets me plan ahead.

I decided to continue, to see how far I could push myself. (This is sign #1 my cognition was getting affected by my exercising, I lose the ability to make sound  decisions)  I blame the dog for not stopping me sooner. I eventually get fatigued and my body temperature did slightly increase and I began to lose my balance.  The rest is pretty easy to guess!

Snapshot 1 (2-9-2013 10-35 AM)
In conclusion, when getting hot or overheated would normally prevent you or I from taking part in something we enjoy, there is an assistive technology solution. An active cooling system.  Check it out.

However, now that I am COOL once again, the rules have changed so……..

Give me a damn hand-basket,

I now have no fear of going to Hell!

Ride safe, and keep cool!

This concludes the 133rd edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on February 28, 2013. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, February 26, 2013.

Wednesday, February 6, 2013

Breathing Deeply Can Help MS

Problems related to breathing in patients with MS can be caused by respiratory muscle weakness, bulbar dysfunction (involving muscles which control speech and swallowing), or abnormalities with breath control.  Reduced muscle strength and spasticity can result in lower lung volumes (less air in the lungs) and eventually stiffness of lung tissue and chest wall due to diminished range of motion.

As a musician, the ability to breathe deeply and control my air flow is vital to accomplishing my job.  From the beginning stages, band students learn to take in a lot of air and move it forcefully through a narrow instrument to create a beautiful sound.  It takes a great deal of effort and power to do so.  But outside of performing on an instrument, even musicians may breathe shallowly and fail to utilize their full lung capacity on a regular basis.

Read this post in its entirety:
Lung Volume Recruitment in MS