July Newsletter 2018

How’s everyone doing and feeling?  I like to get my newsletters out by the 5th of each month.  This month though it was too hot, too humid, I was too lazy, the 4th….I have a zillion excuses to choose from which I don’t like to do. 

I have to admit I’m not the biggest 4th of July fan anymore.  I understand the historic significance of the day, the importance of the day and all that stuff. I don’t know if others are like this but when I turned 30 years old the Fourth started to lose some steam for me.  Over time as my MS has gotten worse I think more steam has escaped!  In my defense how many times can a person oooh and aaah when watching fireworks? lol
When I really think about it though not enjoying July 4ths is probably the result of my MS!  This may sound lazy but on the night of the 4th I would have had to take my scooter outside to argue with heat/mosquitoes.  Then I have all my anxiety/bowel stuff to deal with and lastly MS fatigue!  When 9:45pm came around my couch seemed like the best option so I laid down.
This year the 4th kind of screwed up the week anyway.  I have a hard enough time remembering what day it is let alone have a break in the middle of the week.  lol  Have you ever thought how many functions you’ve missed because of your MS?  If you’re like me it’s been alot! 
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The weather has been good up here in North Dakota!  Not much rain and temperatures like most of the country have been in the 80’s and 90’s.  Most people are out enjoying the weather but it’s a tad too hot for me with my sensitivity to heat.  That’s one of the irritating things about my MS.
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I found these tips about fatigue in an old file of mine. 
Thought it might come in handy for MSers like me.
– Fatigue generally occurs on a daily basis.
– Fatigue may occur early in the morning, even after a 
restful nights sleep.
– Fatigue tends to worsen as the day progresses.
– Fatigue tends to be aggravated by heat and humidity.
– Fatigue can come on easily and suddenly.
– Fatigue from MS is generally more sever than normal fatigue.
– Fatigue is more likely to interfere with daily responsibilities. 
– Fatigue related to MS does not appear to be directly correlated with either depression or with the degree of physical impairment. 
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            Many people experience fatigue on a regular basis like I do.  However, there is one type of fatigue commonly referred to as lassitude which is unique to people with multiple sclerosis.
            Lassitude is thought to result from poor nerve conduction.  It is caused by damage to the myelin around the nerve fibers in the central nervous system (CNS).  Because of the demyelination your body has to work harder just to transmit messages between your brain and other parts of your body.     is thought to result from poor nerve conduction.  It is caused by damage to the myelin around the nerve fibers in the central nervous system (CNS).  Because of the demyelination your body has to work harder just to transmit messages between your brain and other parts of your body.    
  • Lassitude may respond well to medication so talk to your doctor about whether a prescription would work for you.  There are no medications that have been approved specifically for the treatment of MS fatigue.  There are several though which are known to provide relief for some people.  
         By the year 2000 my fatigue was getting really bad!  To combat this my neurologist prescribed a drug called Provigil.  Provigil was a drug for narcolepsy (sleeping illness) but doctors determined it also helped MS fatigue.  For the first two years I would take one Provigil pill and be wired from 6am to 11pm.  It was great!  It felt so great I went out and got a job selling cell phones!
         Over the past 18 years though I feel my body has gotten used to it.  It’s not as effective as it was in the beginning for me.  Provigil has changed names numerous times but it’s still the same pill.  It’s now called Modafinil. 
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I’m guilty of my next topic but I don’t have much choice!  I’ll be writing a larger post for my blog on this next topic but I’ll peak your interest today.
 
Too Much Sitting: Health Risks And What You Can Do
 
– Most American adults sit about 8 hours a day.
– All that sitting is not good for us.
– The longer you sit, the higher your risk of health problems.
– When you must sit for long periods there are small things you can do.
– Don’t sit if you can stand.
– Don’t stand if you can move.
– Rethink your chair.
– Walk, walk,walk.
– Sitting too long is harmful, even if you exercise.
– Stay active while watching TV.
– Keep moving on the go.
– Sit less.  Move more!
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     I was diagnosed with my MS in mid-July of 1991.   
At the time I didn’t know what to expect, how I was supposed to feel or even how I was supposed to act.  I felt really good!  I wasn’t feeling any  pain, I was running my carpet cleaning business with four employees, I was country dancing at night, drinking beer and having a pretty good time!  Multiple Sclerosis would just have to take a back seat.  However, I was about to learn some new things about the disease in a few weeks.    
     It was the third week of August in ’91 at around 8am.  It was then I had the strangest feeling I’d ever had in my life!  I don’t remember where I was driving to or why but I was on the highway near the Minneapolis airport.  While I was driving I suddenly felt like someone had lit a match to all of my toes on both feet.  They were numb and tingly.  It was like the feeling you get when you sleep on your arm over night.  My toes and feet felt like they were asleep.
     I continued to drive and when I’d driven another quarter mile the numb feeling moved from my toes up to my shins and thighs.  Remember, this is all happening within about three minutes.  From my legs that numb feeling went up to my stomach, then my chest, my neck and finally my face and head!  When the feelings reach my face I decided to pull off the highway onto the shoulder.  
     I closed my eyes and took some deep breaths.  I stayed on the shoulder for 15 minutes.  When the sensations had stopped I drove on.  I didn’t have much to do that day so I just drove home.  I rested for the rest of the day.  I wasn’t sure what had happened and why it had happened but I thought if MS is like this it’s not going to be much fun!   
     Looking back now in 2018 what I’d had was an anxiety attack and it wouldn’t be the last!  
 
Scooterjon