August Newsletter – 2018

I saw this MS joke and I thought it sounds alot like my days.

I wake up everyday
planning to be productive,
then a voice in my
head says “Ha Ha, good one!”
We laugh and laugh and then
I lay down and take a nap!

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Exercise can be a real challenge for some people with multiple sclerosis (MS). Common symptoms such as weakness, numbness and balance issues can make physical activity difficult. It may even be a little intimidating. However, exercise is just as important for people with MS as it is for everyone else. A good exercise routine can even help ease symptoms.

Many people with MS find that water therapy is the easiest and most rewarding way to stay physically active. The buoyancy of water helps to support weak limbs, making them feel lighter. Water also provides resistance which helps to strengthen muscles. People with MS may find it easier to stand in the water than on dry land and there’s also a lower risk of injury due to a fall.

People with MS may find they have an increased range of motion in the water. There’s a lot less weight on your joints when your body is submerged. Swimming also can improve endurance, flexibility, strength and balance. Fatigue is the most common symptom of MS and often the most debilitating. According to the Cleveland Clinic regular exercise can improve MS related fatigue.

Swimming also can reduce pain. In a 2012 study a 20-week aquatic exercise program resulted in “significant pain reduction” among people with MS. Study participants also noted improvement in symptoms like fatigue, depression, and disability. An earlier study found that aquatic exercise enhanced quality of life for MS patients. **Above info from the July 2018 healthline newsletter.
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I had been jogging 2 miles per day when I got my MS diagnosis. In June 1991 for some strange reason I kept pulling the calf muscle in my right leg. I’d jog one day and pull the muscle. I’d rest it for 3-4 days and then jog again. The calf muscle would pull again. I’d rest it for another 3-4 days and then jog again. I’d pull the muscle again and rest for another 3-4 days. I did this 4 times and finally retired from jogging and looked for something else to do for exercise. It was now mid July 1991. It was about this time that I got my MS diagnosis.

Looking for another exercise to replace my jogging I jumped into the outdoor swimming pool at my apartment complex. Not being a swimmer I taught myself a really bad breast stroke. lol Weather permitting I would swim outdoors for three more summers. In the wintertime I would swim at various health clubs. Then in 1994 my ex and I bought a house in a suburb of Minneapolis. There was a Bally’s Health Club about 2 miles away.

I joined the Bally’s club and started swimming there. I would swim 4-6 times per week until the year 2000. I was in good shape again! Then for some reason my MS started affecting my right leg. Nothing else, just my right leg. To do a breast stroke you need to kick like a frog. One day in January 2000 I got in the pool and my right leg wouldn’t kick like that frog. My brain would tell my right leg to kick and it just wouldn’t! It was just hanging there. My joke at the time was my left leg was kicking normally but not the right and I was tired of going around in circles! lol I often wonder if pulling the right calf muscle and my right leg not kicking in the pool were related? Maybe MS? We’ll never know?

The only complaint I had with Bally’s was that the floor of the locker room, shower and all around the swimming pool were brown quarry tile. When the quarry tile got wet it was slippery! If I had a brain I would have bought a pair of sandals but I never did. In 1996 after my swim one day I slipped on the wet quarry tile going to my locker. I fell on my right shoulder and jammed my right arm above my head! I was shook up but shook it off. The reason I tell you this is because I can no longer put any pressure on my right arm. To clarify I can put pressure on it but longer than 5 minutes and it starts aching. What does that have to do with this newsletter? Read on….
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I sleep terribly at night. Part of the reason is because my body aches. Different body parts ache when I move in different positions. I was wondering today if anybody else has sleeping problems? Send me an e-mail if you do, jwegner58@gmail.com. I don’t like sleeping on my back or on my stomach anymore. If I do my back starts really hurting at my waist in a matter of minutes. Because of my Bally’s bum arm I don’t like to sleep on my right side. Nowadays, I sleep 95% of the time on my left side.

Starting at 9pm every night I fall asleep watching TV. I might sleep 15 minutes or maybe for 2 hours but then I wake up probably because my TV is still on. lol It then takes about 20-30 minutes to fall back to sleep. I usually get up once per night to urinate. This week my bowels are a mess. If I go to the toilet to have a BM it can take up to an hour to complete. Last night I thought I was going to have a BM twice in the night so I was awake at least 2 hours. Long story short I normally only sleep 3-5 hours per night. Most days fatigue is a problem for me but I understand why! I’ve gotten so used to my way of sleeping. My neurologist says, “sleep when you’re tired” which I do.
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I dug out my ancient memory for this part of my post. In January of 1982 I started managing that racquetball club. I also started eating and not much exercise. On January 1, 1984 I was fat!! Too much beer and too many pizzas. Wanting to look like a health club manager I decided to lose 30 pounds. It took me four months to do but on May 1, 1984 I was 30 pounds lighter. I did this by playing racquetball, riding a stationary bike, paying attention to what went in my mouth and counting calories! Unfortunately, like many people I’ve been gaining and losing that same 30 pounds for 34 years now.

Three years ago in March of 2015 I got on a scale at my neurologist’s office. I weighed a whopping 251 pounds!! Never ever in my life had I weighed that much. I was a tub of flub! I guess when I stopped standing and walking in 2011 I should have stopped eating, too. lol I went home that day and immediately put myself on a 1,500 calorie per day eating program. I also figured my Cokes and chocolate milk in that 1,500! After my drinks I probably was eating only 1,000 cals per day.

At the same time I got out my Post-It notes. I wrote down everything I ate and drank for two years on Post-It notes! I ate everything I wanted to but just kept track of the calories. Calories are easy to count. Here’s some examples… eggs (75 each), can of soup (150-180), 6-inch pizzas (300), fish (160), yogurt (100), rice dishes (150), slice of bread (70) were some of the things I ate. If I wanted a desert or chocolate cake I’d just count the calories and make it up later in the week. One pound equals 3,500 calories. You have to burn off or not eat 3,500 calories to lose a pound.

By March of 2017 I ended up with (two) 4 inch stacks of Post-It notes and I was 20 pounds lighter! It was great because I proved to myself I could lose weight without legs by just counting calories. It was a struggle at times but I did it. Jack LaLanne and Richard Simmons would have been proud! Guess what I did then? You guessed it, I was getting neurotic writing down calories so I threw away my Post-It notes and slowly gained back 20 pounds. I must still think that I have good health and losing weight is easy. Can you say DUMB A**!! I can! lol

That brings me up to July of 2018. I have to lose 30 pounds again with no legs. My wife and I had belonged to a health club in West Fargo for four years. We got in shape until my bowels and anxiety kicked in. The club was only 2 miles away but I didn’t even want to drive that far with my bowel problem. While at the club though I fell in love with the NuStep T5 recumbent bicycle. The T5 counts your miles, calories burned, your speed and how many minutes you rode. There are 15 different speeds and 5 different courses to bicycle. It’s easy for me to transfer to and from. When we quit the club Doris and I made the decision to buy a T5.

A T5 normally costs $5,500 and I don’t have that kind of money. We needed to buy a used one. Doris was diligent looking for a T5. She looked on Craigslist, Facebook and Ebay. After a year of looking Doris finally found a used T5 in Colorado. The lady was selling it because a disabled relative wasn’t riding it anymore. Not bragging but we were able to buy it for $1,000 and a $1,000 for shipping. I’m riding it everyday now and getting back into whatever shape is possible with PPMS. I’m excited and going to enjoy it tremendously!
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The following information came from WebMD.

Bladder infections have a way of getting your attention. You make countless trips to the bathroom and still you feel like you have to go again. And once you’re in there instead of mindlessly going about your business you feel burning or stinging every time you pee. When you get a bladder infection it leads to cystitis which is when your bladder swells and gets irritated. That is what causes the bladder infection symptoms.

Here are the parts of your urinary tract and what they do:

– Your kidneys clean waste from your blood and make pee.

– Your ureters are thin tubes, one for each kidney that carry pee to your bladder.

– Your bladder stores pee.

– Your urethra carries pee from the bladder to outside your body.

– Women get bladder infections much more than men do. Usually, the infections are more annoying than they are serious and antibiotics are the treatment. But they can travel up the ureters to the kidneys and cause more severe problems so it’s important to treat them right away.

– The main culprits of infections are bacteria, usually E. coli. These bacteria live on your skin and in your intestines. Most of the time they’re not a problem. Everyone has them. But if they get into the urethra they can end up in the bladder and cause an infection.

– Women get infections more than men because a woman’s urethra is shorter than a man’s and it’s close to the vagina and anus where bacteria live. Having sex, wiping from back to front after you go to the bathroom, putting in a tampon and using a diaphragm for birth control are all ways bacteria can get in.

During pregnancy the baby can press on your bladder which prevents it from emptying completely and gives bacteria a place to thrive.

After menopause women have less of the hormone estrogen. That causes the lining of the urethra to get thinner and may change the balance of bacteria in the vagina making infections more likely.

When men get them a prostate infection usually is the cause. Any blockage — like from a bladder stone or enlarged prostate — can prevent the bladder from totally emptying and cause infection.

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People ask me all the time how I can recall some of the things I talk about? First, I’ve always written down all my medical stuff thanks to my Mom’s teachings. Second, my long term memory is still good, it’s my short term memory that sucks. Lastly, when something major happens to me I guess it gets burned into my brain! On with my story….

I have had two bladder infections in my life. The first was in 1990. I wasn’t cathetering at the time. It was a Saturday at noon. My ex and I were going to meet another couple at a casino outside of Minneapolis in 4 hours. I remember I was laying on my couch watching a movie and got up to pee. In the bathroom urine was slow to start and I had a light stinging feeling at the end of my penis. After finishing I went back to my couch and movie. I thought I’d emptied my bladder but 5 minutes later it felt like I had to go again! It seemed strange to me.

The second trip to my toilet produced very little urine but that stinging sensation was worse. I went back to my movie but 3 minutes later the urge to pee was back. I thought to myself “what’s up with my penis today?” I urinated very little that trip. Forty-five minutes later back on my couch I was not feeling well. My forehead was hot, my penis was stinging and I was exhausted! The exhaustion probably was from my 5 trips to my toilet without much success. When my ex came home from shopping, I said “let’s skip the casino.” She still wanted to go but she could see I was hurting. We stayed home and 2 hours later we drove to a walk-in clinic.

At the clinic I explained my symptoms and the staff got me into a doctor’s office pretty quick. I laid down on a table and was given (3) 100 ml bags of saline solution. This took from 2pm until about 6pm. It also took care of the infection! The doctor told my ex later that they almost put me in the hospital! The doctor then gave me a prescription for a week’s worth of antibiotics. I don’t know how I got that infection and the doctor didn’t know, either. What it taught me though was to trust myself and to trust how I feel.

I was at work when I had my second bladder infection. Again, the uncomfortable feelings in my genital area and when I urinated it looked like chocolate milk. I’m serious! My urine was dark brown and thicker. I left work immediately and went to my urologist. He examined me and prescribed a weeks worth of antibiotics. After a couple of the antibiotic pills I was feeling better later that day. I now know when a bladder infection is starting. I drink tons of water and the infection never gets going.

That’s all I have this month. Thanks for reading!

Scooterjon