Safety Tips For People With MS

              

      1. Grab bars are very important for shower safety.  There are grab bars that  

          screw into the walls of the shower. There are also suction cup grab bars.  

          The bars are made with a smooth or rough surface.

         

         I never understood the reason for the rough surfaces on grab bars until 

          I was in my current shower.  The rough surface bars help you grip the bar 

         when your hands are wet and soapy!  

2. Decals can be put on the floor of the tub to prevent slippage.  A bathmat that 

    is placed on the side of the tub is also handy.  I use both to help with slippage.  

   

3. There are different types of seats that can go inside a bathtub.  I currently use a bench seat but have used stools in the past.   

Equipment for MS

1.  Shower bench seat
2.  Cane
3.  Walkers
4.  3-wheeled electric scooters
5.  Electric wheelchairs

Allergic To Heat? 

What is heat sensitivity? Many people with Multiple Sclerosis find that their symptoms get worse in hot situations. This can be triggered by hot baths, the sun, or exercise. The effects of heat are temporary, but heat sensitivity can be extremely unpleasant. Plain and simple, as of 2023 I hate heat of any kind!! Since my diagnosis in ’91 heat has been one of my worst MS symptoms. That includes the sun, hot tubs, saunas, sweaters, warm clothes, hot showers and fevers from colds or flu. Humidity isn’t much fun for me, either. I can only take off so much clothing before becoming illegal. lol

When I get too hot my skin starts crawling, my eyes can blur, I feel more tired and when I could still walk, my walking would be wobbly. Not enough to topple over and fall down but I could sense something wasn’t right! Some people with MS have the same problems with cold! For many people, being cold can affect nerve and muscle activity, resulting in discomfort and mobility issues. Since my diagnosis, I’ve never minded cold weather until November 2020. In North Dakota, the winters can be cold and brutal. Lots of cold temps and high wind chills. When it’s cold like that I just don’t go outside anymore.

Dr. Wilhelm Uhthoff, a German ophthalmologist was the first to describe Uhthoff's phenomenon. He noticed that people with optic neuritis, a common symptom of MS in which your optic nerve is swollen, had a temporary worsening of their vision when they exercised. For people that suffer from Uhtoff’s, it can involve a worsening of their symptoms or triggering a full-blown MS exacerbation. The reason is that heat impairs the ability of demyelinated nerves to conduct electrical impulses.

Dr. Wilhelm Uhthoff

One of my first noticeable MS symptoms happened when I was managing a health club in Northfield, MN, USA. I would play racquetball with somebody. Every time I played my eyes would get cloudy or blurry for the first 10 minutes I was on the court. This seemed very strange to me. I was concerned but after 10 minutes my eyes would always clear up, so I didn’t panic.

My cloudy eyes weren’t just in Northfield, either. Wherever I played racquetball my eyes would cloud up. I thought it had something to do with the bright lights on the courts. In hindsight, I would always stretch and loosen up in saunas before playing. I was having what Dr. Uhthoff had discovered in 1890! The optic nerves in my eyes were being affected by the heat in the saunas.

Initially, both Uhthoff and other specialists believed that the exertion involved in exercising was the cause of this phenomenon. Researchers later discovered that the real culprit was the resulting increase in body temperature, not exercise itself. This observation led to the hot bath test. Doctors used this to help diagnose people with MS before the advent of modern imaging tests. Exactly as it sounds, the hot bath test involved placing a patient suspected of having MS in a hot bath to see if his or her symptoms worsened with the heat.

The hot bath test sounds kind of barbaric these days. However, when I think back to how I use to feel after sitting in a hot whirlpool I know what Uhthoff was talking about. My symptoms would worsen. My eyes would get blurry, my skin would feel like it was crawling and my walking would be wobbly. After leaving the whirlpool and cooling down for 30 minutes my eyes would clear up, skin quit crawling and my walking was much better!

Scooterjon

What is heat sensitivity? Many people with MS find that their symptoms get worse in hot situations. This can be triggered by hot baths, the sun, or exercise. The effects of heat are temporary, but heat sensitivity can be extremely unpleasant. Plain and simple, I hate heat of any kind!! Ever since my diagnosis in ’91 heat has been one of my worst symptoms. That includes the sun, hot tubs, saunas, sweaters, warm clothes, hot showers and fevers from colds or flu. Humidity isn’t much fun for me, either. I can only take off so much clothing before becoming illegal. lol

When I get too hot my skin starts crawling, my eyes can blur, I feel more tired and when I could still walk, my walking would be wobbly. Not enough to topple over and fall down but I could sense something wasn’t right! Some people with MS have the same problems with cold! For many people, being cold can affect nerve and muscle activity, resulting in discomfort and mobility issues.

Since my diagnosis, I’ve never minded cold weather until November 2020. In North Dakota, the winters can be cold and brutal. Lots of cold temps and high wind chills. When it’s cold like that I just don’t go outside anymore.

Dr. Wilhelm Uhthoff, a German ophthalmologist was the first to describe Uhthoff's phenomenon (also known as Uhthoff's syndrome, Uhthoff' symptom, and Uhthoff's sign) in 1890. He noticed that people with optic neuritis, a common symptom of MS in which your optic nerve is swollen, had a temporary worsening of their vision when they exercised. For people that suffer from Uhtoff’s, it can involve a worsening of their symptoms or triggering a full-blown MS exacerbation. The reason is that heat impairs the ability of demyelinated nerves to conduct electrical impulses.

One of my first noticeable MS symptoms happened when I was managing a health club in Northfield, MN. I would play racquetball with somebody. Every time I played my eyes would get cloudy or blurry for the first 10 minutes I was on the court. This seemed very strange to me. I was concerned but after 10 minutes my eyes would always clear up, so I didn’t panic.

My cloudy eyes weren’t just in Northfield, either. Wherever I played racquetball my eyes would cloud up. I thought it had something to do with the bright lights on the courts. In hindsight, I would always stretch and loosen up in saunas before playing. I was having what Dr. Uhthoff had discovered in 1890! The optic nerves in my eyes were being affected by the heat in the saunas.

Initially, both Uhthoff and other specialists believed that the exertion involved in exercising was the cause of this phenomenon. Researchers later discovered that the real culprit was the resulting increase in body temperature, not exercise itself. This observation led to the hot bath test. Doctors used this to help diagnose people with MS before the advent of modern imaging tests. Exactly as it sounds, the hot bath test involved placing a patient suspected of having MS in a hot bath to see if his or her symptoms worsened with the heat.

The hot bath test sounds kind of barbaric these days. However, when I think back to how I use to feel after sitting in a hot whirlpool I know what Uhthoff was talking about. My symptoms would worsen. However, at the time I didn’t know they were symptoms of something bigger.

Scooterjon

Weight cycling, often known as yo-yo dieting, is a trend of losing and gaining weight.  Yo-yo dieting is thought to contribute to long-term weight issues and an increased risk of obesity.  Several research studies have been conducted to see if these worries were justified.  Weight cycling and its association with obesity and diabetes were the subjects.   

A total of 19 research studies looked into the impact of weight cycling on obesity-related metabolic risk factors.  More than half of them (58 percent) discovered a link between weight cycling and increased weight and body fat, particularly belly fat, raising the risk of obesity.

Weight cycling appears to enhance the chance of future weight gain, according to three studies.  The majority of studies that looked at the risk of type 2 diabetes reported that weight cycling did not affect blood sugar levels or the risk of type 2 diabetes (76 percent).

As a result though, the researchers came to the conclusion that there is insufficient data to indicate a link between yo-yo dieting and an increased risk of obesity.   

I've been on a yo-yo diet since 1983!  That's not a misprint either, it's been almost 40 years.  I've gained and lost the same 20-30 pounds at least 10 times!  I'm 64 now which makes losing weight more difficult.  It's a fact that older people have a hard time losing weight.  The reason for this is that we lose muscle mass as we age.  Having less muscle means it's harder to use the calories you're eating. 

In the old days, I watched my weight by exercising.  I would simply put on my running shoes and take off running.  If it was nasty outside I would ride an exercise bike for 30-60 minutes.  When my MS took my standing, walking and my ability to run in 2011 I really started packing on the pounds.  

Since high school, I always weighed 180-190.  At a doctor's appointment in 2016, I weighed 200 pounds.  Since I can't stand up because of my MS I didn't weigh myself until late 2018.  When I finally stepped on a scale I was 250 pounds!  I almost had a heart attack.

I immediately put myself on a 1,500 calories a day weight loss program.  I got my sticky notes out and for two years I counted anything that went into my mouth.  I ate and drank anything I wanted to including pizza, Cokes, cookies, candy bars, ice cream and chocolate cake but I always kept up my counting.  In the end I lost 20 pounds with my calorie counting program which was good.  When 2020 ended I was at 230 pounds.  

However, as soon as I got back to 230 I quit counting cals and started eating more!  Like a true weight cycler I gained 12 pounds back to 242.  It was July of 2021 when I discovered The Smoothie Diet online.  I started the Smoothies, watching what I ate and riding my exercise bike.  I ended up losing 32 pounds by February of 2022.  More importantly, The Smoothie Diet has helped me get my weight under control. 

And this Is NOT just a big book of smoothie recipes.  You're getting the same proven 3-Week weight loss and health improvement program that's been shared with private clients.  The secret that makes Smoothie so effective is the Custom 3-Week Weight Loss Schedule.  All the smoothies are given in a very specific sequence and frequency to maximize your results.  For example, the nutrient and ingredient ratios vary week to week to make sure the weight keeps coming off and stays off. 

I still have 20 pounds to go to get to my goal of 190 pounds but I'll get there!  Try it out... The Smoothie Diet.  The smoothies taste GREAT and now you can save $10 when you join.

 Scooterjon W.

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 My First Multiple Sclerosis Symptom

     After much thinking and remembering, the first if not the very first symptom of my MS was intolerance to heat.  This would have been around 1972 or '73.  I would have been 14 or 15 years old.  Of course, at the time I didn't know it was a symptom of MS.  I would be in the backyard playing ball or mowing the grass.  I always thought our backyard was really hot so I'd be sweating which is normal.  When I went back in I would head down to the basement where it was very cool.  This was 48 years ago but I can still remember my walking would be unsteady and my skin felt like it was crawling.  At this time we didn't have air conditioning and I'd have the strange feelings for an hour or until I cooled off.  

As a teenager, I practiced or played baseball in our backyard every day in the summertime. We had a round picnic table in our backyard that the family didn't use very much. One day I got the idea to tip the table on its side and throw a tennis ball at it. To my surprise, the ball came back to me in the air! I caught the tennis ball and threw it a second time. Again, it came right back to me. It seemed when the picnic table was on its side it was angled just enough to return balls to the thrower waist to chest high! I was happy because I could play catch with myself if no one else was around.          

The bottom 1/3 of our house in the backyard was cement.  I got the idea to throw the tennis ball against the bottom 1/3 of our house. The bottom 1/3 was cement blocks. I'd throw the ball lower and it would come back to me on the ground like a ground ball to an infielder in baseball. On hot summer days, I might spend 1/2 hour to an hour throwing tennis balls against the cement block and the picnic table. I'd come in sweating like pig and having those same funny feelings as in paragraph one.   

In the summer of '75, I was 17. When school started in the fall I'd be a senior in high school.  I wanted to look good my senior year so on sunny days I'd lay on that round picnic table in the backyard. I'd bake myself until I had a great tan. I remember it would get so hot and I would make myself stay out there for at least an hour. After coming inside I always felt lightheaded, tired with itchy skin. Again, I would head to the basement. In hindsight, I think two of my worst MS symptoms were around back then. That would be my heat symptom and my cog fog symptom.

Scooterjon

Early Symptoms of MS?

I write articles about my life and my disease which is multiple sclerosis. I used to put them on different e-zines on the internet. I stopped writing about 5 years ago. I had some disappointments in my life and I just didn't feel like sharing my life anymore with other people. 

Now, I'm going to start writing this blog again because I think I have something to tell people with multiple sclerosis. I think my writing also helps newly diagnosed people so they understand what can possibly happen to them. I also have to admit that it's cathartic for me to write about my health. 

I was diagnosed in July of 1991. Now that I know the symptoms of MS I can date it back to at least 1976.  In hindsight, in '76 I might have had symptoms of MS but I knew nothing about the disease.  Who would think they had Multiple Sclerosis because you were urinating a lot and didn't like heat situations.  I wasn't dying so you just blow those things off.  I think a doctor might call you a hypochondriac!  

Back in the late '70s, my MS symptoms were so infrequent that if they were symptoms I didn't bother with them.  An example of this was 1976 at junior college. One week I was running to the restrooms to urinate after each class. I was drinking a lot of beer back then so I thought it was just the result of drinking too much beer the night before. However, I do remember saying this to myself on one of my trips to the toilet, "I wonder if I could have diabetes?" 

Now I didn't know anything about diabetes but I'd heard or read that people with diabetes urinate a lot.  It's difficult to determine if my urination problems that week at junior college were MS or something else? Looking back, I think it probably was an early sign of MS but I didn't know MS from brain surgery.  I was enjoying my new life as a college man. Now that I know what I know it could have been an exacerbation that lasted just one week.

Scooterjon

Cryotherapy

In spring 2015 I went in to see my urologist for a checkup of all the parts connected to urinating.  The doctor ordered a cat scan of my abdomen and areas related to urinating.  When the cat scan came back it showed a small growth in my right kidney. It was only two centimeters long.  We decided to keep an eye on it to see if it grew any. Many times these growths don't need attention but you need and want to keep your eye on them. 

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We checked it 6 months later in the fall of 2015 and there was no change in the size of it so we left it alone. I went back to my urologist in the spring of 2016 for catheter troubles.  We decided at that time to do another cat scan on my kidneys. This time the cat scan showed minimal growth but my wife and I decided to have the growth removed anyway.  I'd never had a surgery of any kind in my 58 years.  I'd always been fairly healthy. So this was going to be a new experience for me. The next week my wife Doris and I met the surgeon and he went over the options that could be done to get rid of the growth.  We chose a procedure called Cryotherapy.  

===================================

What is Cryotherapy?

Cryotherapy kills cancer cells by freezing them. It can cure small, early stage kidney cancers. See how and when you may have it. 

Your doctor puts small needles through your skin into the cancer area. The needles use liquid nitrogen to freeze the cancer cells. These cells fall off and normal cells can replace them.

This treatment is also called freezing therapy, cryosurgery or cryoablation. It is sometimes called percutaneous cryotherapy. Precutaneous means that the freezing probe is put through the skin. 

===================================

Who has Cryotherapy?

Cryotherapy is used to treat small, early stage kidney cancers less than 4cm across. For some people, it can cure the cancer without a kidney being removed. So it's used for people who are not fit enough for surgery. 

You may need to have the treatment again if the cancer comes back, or if cancer cells are left behind.

The specialist urological cancer multidisciplinary team assess you for this treatment. It's mainly available in specialist hospitals. Your doctor will explain the possible risks and benefits to you 

=================================

What happens during Cryotherapy?

You can have cyrotherapy treatment under local or general anesthetic.

The surgeon finds the cancer using an x-ray or ultrasound scan. They make a cut in the skin over the kidney or use keyhole surgery. Keyhole surgery uses smaller cuts and the doctor uses a camera (laparoscope) to see inside the body.

The surgeon may take a small sample of tissue from the cancer. Then they put one or more Cryotherapy needles through the skin. These go into the kidney close to the cancer.

Once in position, the needles use liquid nitrogen to freeze and destroy the cancer cells.

================================

Side effects of Crotherapy

The treatment area can be painful after the anaesthetic wears off. You will probably need to take painkillers for a few days.

Other problems after surgery can include:

• bleeding around the kidney, requiring a blood transfusion
• urine leakage
• temporary weakness caused by a nerve being damaged
• injury to the tube that carries urine from the kidney to the bladder (the ureter)
• ===============================

Complications

In research studies there have been no major complications in patients treated with cryotherapy through a cut in the skin (incision).

Complications in people who had cryotherapy through keyhole surgery are very rare, but have included bowel injury, breathing difficulties and an abnormal heart rate.

** Information from Cancer Research UK - kidney cancer
================================

This is my definition of Cryotherapy and I'm no doctor. It is a procedure where growths are frozen. Then the growths shrink and eventually the growth goes away! During the surgery my surgeon took a small sample of tissue from the growth to check for cancer.  My growth came out pre-cancerous so it could have grown into something more major.   

After checking in which took an hour I went in for the surgery. I was laid on a gurney and had two nurses and an anesthetist prepping me. I'd never had a surgery before. The anesthetist put a mask on me and said take a couple of breaths which I did. That's the last thing I remember until the nurse woke me up. I'm assuming the surgeon came in next wielding his laparascope.  Once inside me he froze the small growth.  The actual surgery only took 45 minutes to an hour. When the surgeon finished I had 4 tiny holes by my right shoulder where the surgeon went in with his laparascope. I wish I could be more detailed but I was gassed.  I stayed overnight at the hospital and was watched closely by nurses.  

After one month I went in for another cat scan to check on the growth. It was smaller.  Six months later I had another scan and again it was smaller.  Then this past week another cat scan was done which was one year after the surgery. The growth is still shrinking. The growth is still in my liver but it's getting smaller. I was able to see the cat scans and my little growth.  I'll do another cat scan in a year to make sure the growth continues to shrink or is completely gone. Anyway, that was my good news and I'm happy!!  

                                         Scooterjon - Christmas 2015


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