Wednesday, April 18, 2018

Fatigue/Heat Intolerence  

According to the National Multiple Sclerosis Society, 80% of people with MS have fatigue. MS-related fatigue tends to get worse as the day goes on, is often aggravated by heat and humidity and comes on more easily and suddenly than normal fatigue. 

Medically speaking, fatigue is not the same thing as tiredness. Tiredness happens to everyone -- it is an expected feeling after certain activities or at the end of the day. Usually, you know why you are tired and a good night's sleep solves the problem.
Fatigue is a daily lack of energy; unusual or excessive whole-body tiredness not relieved by sleep. It can be acute (lasting a month or less) or chronic (lasting from one to six months or longer). Fatigue can prevent a person from functioning normally and affects a person's quality of life. 

What's the best way to fight MS related Fatigue?

The best way to combat fatigue related to your MS is to treat the underlying medical cause. Unfortunately, the exact cause of MS-related fatigue is often unknown, or there may be multiple causes. However, there are steps you can take that may help to control fatigue. Here are some tips: 
- Avoid extreme temperatures. Extreme temperatures may worsen your symptoms of Multiple Sclerosis.

- Avoid exercise on hot and humid days, and never exercise to the point of fatigue.

- Use air conditioning. If hot and humid conditions worsen your MS try to stay in cool and dry areas as much as possible. A home air conditioner may be tax-deductible for some people with MS so talk to your doctor about that. Some people use a cooling vest on extremely warm days.

** ABOVE INFORMATION FROM THE NATIONAL MS SOCIETY WEBSITE   


For me fatigue is a major problem. I'm not the best night time sleeper anymore and I generally wake up in the mornings still tired and sleepy. I'm retired so it doesn't affect any job performance but I generally do my daily activities and they can exhaust me. My daily activities are showering, working out, eating, surfing the internet for information and typing on my computer. Usually by 3pm I'm tired enough to lay down and sleep for 30-60 minutes. Then I get up and seem to be recharged for more inactivity! lol Nowadays, I generally lay on my couch at 6pm to eat and watch TV until I go to bed.  


I was used to working hard because I owned a carpet cleaning business at the time. However, the feeling I was having was just total exhaustion and this was only
Personal story of mine regarding fatigue. Back in 1991 I went with some friends to northern Minnesota for a fun weekend. This was before I was diagnosed with my MS.  About halfway to our destination we stopped in a small town to pick up some ice and food. I walked into the store and all of a sudden I had this feeling of being totally exhausted. I hadn't experienced this before and I remember sitting down on some cases of pop to catch 




I sat on the pop cases for about 15 minutes until my friends were ready to go again. I remember walking slowly to the car a little woozy wondering what was happening to me.  
I wasn't driving so I sat in the backseat and closed my eyes.  I stayed like that for about 20 minutes and bingo...when I opened my eyes the tired feeling had left!  In hindsight, I remember the temperature were rising and it was getting humid out.  I know now that those are two of my worst problems that can lead  to more tiredness. 





















Scooterjon


















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Tuesday, April 17, 2018

MS Symptoms


In my 27 years of Multiple Sclerosis I've had these symptoms and others at one time or another but I'm proud to say that I'm still here and grunting out life!  
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                              At the convenience store sitting on my scooter

Numbness and Tingling - Numbness of the face, body or extremities (arms and legs) is often the first symptom experienced by those eventually diagnosed with the disease  Multiple Sclerosis. Personally, I've had alot of numb feelings. Some part of my body would start tingling or be numb once every 12-18 months. Sometimes it would just be a 3 x 4 square inch on one of my thighs. It usually meant an exacerbation (worsening of symptoms) was on the way. My first exacerbation after my diagnosis I experienced complete numbness in my left arm from the shoulder to my fingertips. I didn't have a neurologist yet that I liked so I had a numb arm and hand for about three months. Steroids would have ended it in three days. After the numbness went away normal feeling came back to my arm however I only got half of the feeling back in my left hand. That was 25 years ago and I still don't have all the feeling in that hand as of 2018.  

Spasticity - Refers to feelings of stiffness and a wide range of involuntary muscle spasms; can occur in any limb, but it is much more common in the legs. My legs currently shake like crazy if I put my feet in the wrong positions. My legs would shake all day long if I let them and didn't change the position of my feet.  

Weakness - Weakness in MS, which results from de-conditioning of unused muscles or damage to nerves that stimulate muscles can be managed with rehabilitation strategies and the use of mobility aids and other assistive devices. Since I stopped working out my body is weak as all get out. 

Vision Problems - The first symptom of MS for many people. Onset of blurred vision, poor contrast, color vision and pain on eye movement can be frightening. That symptom should be evaluated promptly. I remember during my exacerbations I would have blurry vision in one eye or the other. However, I do remember one exacerbation when  both of my eyes were blurry. That's kind of scary because I had read before that blindness was a possibility with MS. The other problem is I used to get headaches because of an eye being blurry. 

Here's another eye story. It was the spring of 1991 when I was at practice for slow pitch softball. I was in the outfield catching fly balls. A fly ball was hit my way and I ran to catch it. My eyes were looking up into a cloudy sky and without warning I lost the flight of the ball. It seemed to disappear. I remember attempting to take a couple more fly balls and the same thing happened. I thought to myself how strange and that I should make an appointment and have my eyes checked. I went to a Benson Optical that same week and had my vision checked and all was OK! Now, I really didn't have an answer for losing sight of those fly balls. 

The next week we had another practice and I was playing catch with a teammate. We were about 10 feet from each other. The first few catches were no problem but then my teammate threw a ball. I saw the ball leave his hand and then it disappeared! I stuck out my glove where I thought the ball was going and suddenly I saw the ball when it was about a foot away. I caught the ball, threw it back and then my teammate threw another one to me. Same thing happened. Now remember, we are only 10 feet apart. I thought I must have blinked or something and lost sight of the ball. It was crazy! I tried it one more time, lost the ball again in mid flight and decided to stop before I got hit in the mouth! After practice I decided to go to a Pearl Vision Optical the next day to see if the Benson Optician knew what he was doing. Again, I had my eyes checked by Pearl and nothing was wrong. The Pearl optician had listened to my symptoms and story and he suggested I see a ophthalmologist. (That's really how to spell the word, I looked it up).

I scheduled an appointment two weeks later at my local ophthalmologist. For the third time my eyes checked out perfectly. After hearing my symptoms though he thought I should see a neurologist. It was then that my multiple sclerosis journey began.         

Dizziness and Vertigo - People with MS may feel off balance or lightheaded, or — much less often — have the sensation that they or their surroundings are spinning (vertigo). If I bend over to pick something up or if I look up to the ceiling I will have vertigo. I simply close my eyes for 20 seconds and it goes away.  

Bladder Problems - Bladder dysfunction, which occurs in at least 80% of people with MS, can usually be managed quite successfully with medications, fluid management, and intermittent self-catheterization. I quit urinating in January of 2000.  I then started self cathing. If you use a lubricant on the end of the catheter it doesn't hurt at all or at least mine don't

Sexual Problems - Very common in the general population including people with MS. Sexual responses can be affected by damage in the central nervous system as well by symptoms such as fatigue and spasticity, and by psychological factors. I stopped getting erections on or about 1996. Viagra works well for me.

Bowel problems - Constipation is a particular concern among people with MS, as is loss of control of the bowels. Bowel issues can typically be managed through diet, adequate fluid intake, physical activity and medication.

In July of 2016 I started losing control of my bowels. I know when I'm going to have a bowel movement but I have to be on my toilet in about 50 seconds. With transfers it's kinda tight. Nine accidents in 2017! Because I don't like accidents I usually spend 2-3 hours per day on my toilet. That's not a one time visit but maybe 3-5 visits. 

Pain - Pain syndromes are common in MS. In one study, 55% of people with MS had "clinically significant pain" at some time, and almost half had chronic pain. I can say personally that I don't have any particular pains anywhere in my body. However, my toes and the bottom of my feet have been tingling and numb for about the last 15 years.

Cognitive Change - Refers to a range of high-level brain functions affected in more than 50% of people with MS, including the ability to process incoming information, learn and remember new information, organize and problem-solve, focus attention and accurately perceive the environment. Nowadays, I tell people I have the attention span of a 3rd grader. I try to follow videos on how to make money online and I usually don't make it past 5 minutes. I also tell my wife I have an eight second delay on absorbing information. If someone tells me a joke I usually don't get it if it's long joke.

Emotional Changes - Can be a reaction to the stresses of living with MS as well as the result of neurological and immune changes. Significant depression, mood swings, irritability, and episodes of uncontrollable laughing and crying pose significant challenges for people with MS and their families. I find myself tearing up when I hear certain stories in the paper or on TV. 

Depression - Studies have suggested that clinical depression — the severest form of depression — is among the most common symptoms of MS. It is more common among people with MS than it is in the general population. I have been having depression for the past 2 years and maybe longer. I don't take care of my personal hygiene. There are alot of showers, brushing my teeth etc. that I should improve on. However, I'm home alone except for my wife so I don't always find it necessary. I don't exercise nowadays as much as I should and I'm gaining weight again. I watch alot of old-time shows and sports on TV.  My interest in sex is waning. It seems like alot of work! I usually lay down on my couch by 6pm and go in and out of sleep until 10pm when I go to bed.


Fatigue - Occurs in about 80% of people and can significantly interfere with the ability to function at work.  It may be the most prominent symptom in a person who otherwise has minimal activity limitations. I'm always tired! I wake up in mornings tired.  Once or twice a day I have to lay down because of an exhaustive feeling people get with MS.

Walking difficulties - Related to several factors including weakness, spasticity, loss of balance, sensory deficit and fatigue and can be helped with physical therapy, assisted therapy and medications. I now ride scooters full-time. The last thing I see at night and the first thing in the morning is my scooter. I started with a cane, then a walker and finally my scooters.

Cognitive thinking - I've noticed in the last 5 years I have the attention span of a 3rd grader.  For a guy who is college educated with degrees it can be frustrating.  I'm tired now and need to take a nap!  lolol  MS can take any body part that it wants to but personally it will never take my attitude, my personality or my laughter!  


Scooterjon

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** Please excuse any typos in my blog.  Blogspot.com designs doesn't seem to listen to my directions very well.  lol