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I apologize for my late newsletter but the last 30 days have been trying to say the least. My newsletter is short but here is what has been going on in my life.
Because of Multiple Sclerosis September has become my favorite month of the year. I think the majority of people look forward to the summer months but I don’t anymore. High humidity and temperatures can just slow me down. And I don’t mean temperatures in the 90’s. Anything over 80 degrees and I’m looking for air conditioning! I don’t get out much anymore and I joke to people when I am out that I’m the whitest guy I know.
If I’m out too long I can also get some brain fog, too! My head and thoughts feel like there in a cloud. However, in September temperatures in the upper Midwest are usually in the 70’s which goes well with my sensitivity to heat. I can get outside and scoot around the neighborhood if I want to. Travel in general is just easier. Nowadays, it’s the little things in life that make me the happiest.
Luck sure is a strange thing. Normally, I don’t think anyone with MS would consider themselves too lucky. However, I guess I still have some left because here is what happened to me in the past month. My wife Doris and I had been looking for a handicap accessible van for the past year. It was getting harder and harder for me to transfer to the driver’s seat in our current van. In fact, it was kinda dangerous what I would do to be able to get in the driver’s seat.
We wanted to get something that would make transferring less dangerous and loading my scooter a little easier. There is a local truck equipment company in Fargo that does van conversions. We looked at their website and the least expensive converted van was $22,000 and the highest priced van was $61,900. A similar van to what we bought was listed at $33,500. We also priced other used handicap vans and they are not cheap! Even though Doris and I are independently wealthy (yea, right lol) those prices are out of our league.
Long story short but three weeks ago Doris and I bought a used handicapped accessible van. The van is complete with a ramp in it. The sliding door on the passenger side is remote controlled. All I have to do is push a button on my key chain and I can drive my scooter right into the van. Once pushed the passenger door opens and the ramp automatically comes down! It’s kinda cool! Then all I have to do is drive up the the ramp and I’m inside. Then the passenger seat swivels so I just swivel the seat around to face my scooter. I still have my upper body strength so I can transfer from my scooter to the passenger seat really easy. From there I can do a quick transfer to the drivers seat and away I go!
This sounds funny but it’s all true. The van we bought was owned by a little old lady in a small North Dakota town called Rugby. Rugby is three hours away from West Fargo where I live. The lady was disabled with heart problems and terrible arthritis. Unfortunately, the woman passed away about 6 months ago. I happened to be at a doctor appointment one afternoon in early August. When I was scooting to the parking ramp I just happened to meet the elderly lady’s daughter who now lives in Fargo. The daughter’s name was Colleen.
I generally talk too much and I’ll talk to anyone that wants to listen. lol Colleen works at the hospital and was leaving to go home. We were both parked in the hospital parking ramp. We exchanged pleasantries and somehow we started talking about handicap vans. She explained her mother’s disability and how her van had helped her. I mentioned we were looking for a used van to buy that had a ramp. Well, if I hadn’t been lucky and chatty the following wouldn’t have happened.
To our surprise Colleen said she might have a van for sale. It was her deceased mother’s van. She had to check with her family (10 brothers and sisters) to see if they still wanted to sell the van but she was pretty sure they would. She e-mailed me pics and I stared to get excited! The next week she checked with her family and they did want to sell.
I then told Colleen to get the van down to Fargo from Rugby which she did the following weekend. I had my mechanic check out the van and a deal was struck. It’s a 2007 Dodge Caravan with only 68,500 miles on it. The body was in great shape and the interior spotless. Last year Doris and I only put about 1,500 miles on our current van. Dodge Caravans are supposed to last at least 200,000 miles or more. I figure the van we just bought will be the last vehicle I’ll have to purchase for the rest of my days. We paid a good but fair price and everybody was happy!
On August 20 I had surgery to remove my teeth! Two of my front teeth had already broken off or fallen out. All the others were losing enamel so they didn’t have too long to go before they would break off or fall out. The surgeon also said that bacteria in the mouth can also get in the bloodstream. Once in the bloodstream it can possibly get to the heart and lead to heart problems.
In all I had 26 teeth extracted. My face and mouth have hurt for two weeks now. Today is the Sept. 4th and part of my chin is still numb. After the surgery my MS fatigue also seemed to be worse! I didn’t want to do anything but watch TV. Two weeks after the surgery and I’ve had no infections and I’m glad to say my MS fatigue is back to its normal crappy level.
I know I didn’t take care of my teeth too well in my youth but I’m blaming steroids for the tooth damage. I took alot of IV steroids in the 90’s for my MS exacerbations, I’ve been taking my asthma inhalers for 30+ years which have some steroids in them and recently someone told me that Copaxone can cause teeth problems. I only took Copaxone for my MS for 20+ years. My neurologists always said that IV steroids aren’t the best but none of them ever said anything about teeth being affected.
One problem that developed after the surgery was this. I was given antibiotics to help with possible pain and infections. These antibiotics can also cause diarrhea which is not a good thing for a guy with bowel troubles. I’ve battled with that for two weeks now and frankly it’s exhausting! I was scooting back and forth to my toilet 6-8 times per day. Fortunately, so far I’ve only had two accidents and hopefully no more! All in all I’m glad I had the teeth extracted and looking forward to dentures!
On Sunday August 30, I had one of my worst falls in recent memory. I don’t like to fall because it drives the nerves in my body crazy! It’s like sticking a bobby pin in an electric outlet. I have to explain this. In my bathroom I have a small wooden stool which is the same level as my toilet seat. I transfer to and from the small stool from my scooter when I have a BM. After BMs I hoist myself up onto my scooter and drive away. When I finished my BM on the 30th I transferred to my small stool. I then lined up my small stool with my scooter to hoist myself onto the seat.
When I started my hoist I knew right away I wasn’t going to make it. It was 5pm and I was tired. When I knew I wasn’t going make the transfer I tried to lower myself down slowly. It never works out that way though. I ended up falling two feet from my scooter seat to the floor. I learned a long time ago that when you fall you should try to keep your head up.
Well, I kept my head up but guess what was behind me? That’s right, my small wooden stool was still back there. I hit the back of my head on my little wooden stool so hard it pushed the stool up against the wall! The wall didn’t give and I struck with such force I had an instant welt that I still have 2 weeks later. I had some choice words about my stupidity as I lay on my bathroom floor kinda dazed. I was also wondering how I was going to get back on my scooter?
I knew I wasn’t going to be able to get back on my scooter so I decided to crawl to my living room couch. I can’t get on my knees anymore (it’s painful to do this) so I did my sliding on my butt. After 15 minutes I was halfway to my couch. Luckily, my wife arrived home from shopping. She took one of my arms and dragged me the rest of the way to the couch.
Once I got to the couch I had my wife put a pillow under my knees. She then drove my scooter so I was between the couch and scooter. I put one hand on my scooter chair and one on the couch and I was able to hoist myself up enough to sit on the couch. Then I transferred to my scooter like normal. I joke with others that you can punch me in the mouth but don’t tip over my scooter. I’m like a turtle on his back. With this last fall I proved to myself I am definitely DISABLED.
What made me the most proud concerning my surgery is that I contained my anxiety before the surgery! I don’t like doing much these days before 11:00 am because of my anxious thoughts and bowel problems. The hospital is in downtown Fargo which is about 10 miles away. I was supposed to check in at 7:45am. I had to get up at 6am to make it. Over the past 20 years I would have started fretting about that time two weeks in advance until my anxiety was sky high. I’ve always said that anxiety is worrying about nothing!
The way I’m controlling my anxiety is to simply not think about what I have to do. I’m just completely blanking out what is happening or going to happen! I realize that’s easier said than done but it does work. On my surgery day I knew the hospital staff would take good care of me and they did! The procedure had to be done and it was. I’m happy!
Moodiness and irritability:
Moodiness and irritability may manifest as rapid and generally unpredictable changes in emotions. Family members may complain about frequent bouts of anger or irritability. The increase in irritability and moodiness can have multiple causes.
* Many people who are depressed become irritable or moody
* Changes in the brain may be responsible.
* The challenges of life with MS can make many people feel irritable.
Whatever the cause emotional lability can be one of the most challenging aspects of MS from the standpoint of family life. Family counseling may be very important in dealing with emotional lability since mood swings are likely to affect everyone in the family.
A correct diagnosis of the problem is essential in order to identify the right treatment. An antidepressant may be the optimal treatment if depression is the cause. However, a mood stabilizing medication such as valproic acid which is an anti-convulsant medication that is used in low doses to stability mood. This may help with severe mood shifts and emotional outbursts.
Emotional lability is a sign or symptom typified by exaggerated changes in mood or affect in quick succession. Sometimes the emotions expressed outwardly are very different from how the person feels on the inside.
For me personally I know I can be short tempered or short if something doesn’t go my way. Sometimes I’ll snap at my wife for things that would have never bothered me before my MS got worse in 2011. I blame it on not working and having enough to do for the past 15 years. Most days I’m bored to death! I think starting my blog has helped some. I just keep plugging away! That’s all I got for this month, take care and be good! Any questions e-mail me at firstname.lastname@example.org
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!
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.
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.
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. 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.
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.
Get Some Exercise:
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!
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!