Jottings

      I feel I can talk about my MS with confidence because my body has experienced just about everything that MS can dish out.   The last thing was losing control of my bowels and that really started affecting me in July of 2016.   It's now March 2017 and I'm still fighting that symptom.  

     I ride my electric scooters (Max & Ginger) 100% of the time.  I use to say as long as I have my scooters who need legs!   I used to joke with people that walking was overrated anyway!   I was just talking cocky because now that I can’t walk or stand some days I think it would be nice to be able to stand up to get to my refrigerator or bathroom.   Max & Ginger will be my legs for the next 30 years and it’s slowly sinking in.   My walking and standing stopped back in November of 2011.  My spinal cord had developed or is still developing more MS lesions which are blocking the functions of everything below my waist.  I'm continually amazed at what the human body can do or not do to itself!  It's kind of weird to experience losing your legs firsthand.  I didn't get blown up in a war, I didn't have a bad diving accident and I didn't have a bad car accident.  Multiple sclerosis just happened to me!  

     MS is a debilitating disease of the central nervous system.  It can affect every part of your body because there are nerves throughout your body.   For some reason and doctors don't know why but the body of a person with MS is literally attacking itself.   If you looked at the MRI of my brain and spinal cord you'd see little white spots which are called plaque.  Myelin is the protective sheath over the nerves like the rubber around an electrical wire.   Your brain sends a signal to do something and the myelin keeps the signal going to where it has to go.  When scarring or plaque occurs on the myelin it interrupts the signal from the brain and sends the signal somewhere else.

     An example of how the plaque affects me is this.   Since January 2000 when I have to urinate I catheter myself.   The signal from my brain to my bladder to release my urine gets short-circuited.  I could stand in front of a urinal until hell freezes over and I would never urinate.   Not even a drop.  I'm not sure where the signal goes but the cathing works great for me!   I’ve now catheterized roughly 37,770 times give or take a couple hundred.   It doesn’t hurt when you use a lubricant.  

Scooterjon

Lonely Disease

I think MS can be a very lonely disease.  When you have blurry eyes, tingling feelings or bowel troubles you're the only one who knows about it unless you tell someone.  When you're first diagnosed there are counseling clinics where you can talk to counselors and other people newly diagnosed with the disease.  Now after 25 years I really don't want to talk with anyone about my disease except my neurologist.  I just want to live the rest of my life as simply as I can.  I'll probably die in the town that I now call home.  One reason I wrote this article is because many people don't know anything about MS.  I don't know how many times I've told somebody that I have MS and they've said, "is that the disease Jerry Lewis is trying to cure"?  So many people don't know a thing about it and I'm going to try to explain some of the disease as it pertains to me.

I want to emphasize that MS is not a death sentence.  I now know though that I’m going to be disabled for a long time.  When you think about that it's kind of depressing but a person must go on as best as they can!  Unless a person has complications with their MS or has a heart attack or something like that multiple sclerosis won't kill you!  It will make your life challenging and difficult at times but it won’t kill you.  I consider my MS just a speed bump to what I want to accomplish in my life.  It’s taken me 25 years but now I accept my disease and all that goes with it.  I live in a great little city where I can ride my scooter everywhere and people will help me if it's needed.  

We all have to have dreams.  Let me explain something to you so I don't sound too greedy.  I don't take vacations, I don't buy fancy sports cars (vans only for me - I have to haul my scooter), I don't wear fancy jewelry or clothes and I wouldn't buy a big mansion if I could.  What I would do if I had money is live in comfort knowing that I had a lot of money in the bank.  I want to feel secure.  MS can make a person feel insecure at times because you don't know what's going to happen to you next.   I just want to feel monetarily secure!  Looking back on my 25 years with MS the disease has been a great teacher and I’ve learned a lot about myself, the disease and my inner strength.

Scooterjon

How Do You Determine Quality of Life?

The title of my article today is really a good question.  Have you figured out your quality of life yet?  I have done a lot of soul searching in the past 10 years.  Some people might say the quality of my life is not so good anymore.  I beg to differ.  I have friends, family, my son and my wife which make me happy!  Sure, I'm not out partying and going to ball games like I used to but there is always a silver lining.  Not doing those things saves me money and what's left of the rest of my health.

Those two little letters (MS) always catch my eye even when they're not related to Multiple Sclerosis.  I've had some fun times in the past 10 years but not a lot that I can recall right off the top of my head.  I realize that there's always someone worse off than you.  I have a friend in town that became blind from diabetes in the past 3 years.  He's 63 and not married.  He can't go anywhere unless someone picks him up and takes him where he has to go.  His 83 year old mother drives 40 miles one way every week to make my friend Jim some sandwiches.  She also takes him to his favorite bar so he cans BS with his friends.  Because of his diabetes Jim can't walk very well, either.  In my opinion Jim is worse off than me because of his blindness/diabetes.  
   
I've always said that I’ll lose the use any body part to MS but I never want to lose my eyesight.  An exacerbation is a worsening of my MS symptoms.  I've had a couple of exacerbations where one of my eyes was so blurry that I couldn't see anything out of it.  Luckily, when it’s happened it's only been in one eye so I still could see with the other one but it can be very scary.  I also have a tendency to get headaches when my eyes are blurry.  The crazy thing about MS is that you don’t know what is going to happen next.  This uncertainty has led me to a decade of anxiety and panic attacks which I’ll talk about in another article and which I still suffer from.

Now for the first time in 10 years I can truly say that I accept my disease.  I feel like all the bad stuff has already happened to me and if I can stay at this level I'll be just fine.  Life is still GOOD!  It sure beats being dead but I've never been dead so I don't know.  lol  I feel there are no surprises left for me.  My eyes have been blurry to the extent of blindness, I can't walk anymore, I've lost control of my bladder and bowels, my cognitive thinking is a little screwed up, I hate heat, I don't sleep well at night and my MS fatigue is as bad as ever.

The good news is that I still have a good attitude.  I think I’m more humble and I think I'm nicer to people.  Not that I was ever mean to people but I'm more polite, kind, sympathetic, etc.  I’ve always had a burning desire to become wealthy but since I became sicker I now think that differently, too.  I just want to earn some money.  I'm learning to live life as a disabled man.  I've always had a great sense of humor but I always thought it was my beer drinking that made me funny.  I don't drink anymore and I realize that I'm still pretty funny!  To sum it up I'd have to say the quality of my life is still pretty good!

Scooterjon

Surgery Success!

In the spring of 2015 I went to see a 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 would grow any.  We checked it 6 months later in the fall 2015 and there was no change in the size of it. However, when I went back in January of 2016 for catheter problems I had another cat scan of my kidney.  The small growth had grown a little and the urologist said it would probably keep growing at a slow rate.  Since it could be cancerous my wife and I decided not to wait and to have a surgery called Cryoplasty.  We had never heard of Cryoplasty so we searched on the internet and found out.  Cryoplasty is therapy that uses pressure and cold to freeze growths in the body.  

On February 16, 2016 I went in to have surgery on the small growth.  I'd never had surgery of any kind so all this was going to be new for me.  When the time came I transferred to a gurney and they wheeled me into surgery.  An anesthetist is a person who administers anesthetics, usually a specially trained doctor or nurse.  He leaned over me, put a gas mask over my mouth and nose and said I should take 2 or 3 breaths.  I had never been put to sleep before and all I remember is taking two breaths and I was gone. When I woke up I was taken to my hospital room where I stayed overnight and was released the next day.  The surgery didn't hurt at all and the only signs of a surgery were four little marks by my right shoulder blade.  The doctors also did a biopsy on the growth and it did turn out to be pre-cancerous so it was good I'd had the surgery!    

Two weeks ago on February 23, 2017 I went in to have another cat scan to see what was happening to my growth.  This cat scan showed the growth still in my kidney but smaller.  As I understand it the growth will continue to get smaller.  A year from now I have to go in again for a cat scan and hopefully the growth will be smaller or completely gone!  If all looks good I won't have to have another cat scan for 5 years.  All in all I have to say my surgery was a success and I was treated very well by the hospital staff.  

Scooterjon

Less Common Symptoms With MS 

Speech Problems - Speech problems, including slurring (dysarthria) and loss of volume (dysphonia) occur in approximately 25-40% of people with MS, particularly later in the disease course and during periods of extreme fatigue. Stuttering is occasionally reported as well.

Swallowing Problems - Swallowing problems - referred to as dysphagia - result from damage to the nerves controlling the many small muscles in the mouth and throat

Tremors - Tremors, or uncontrollable shaking, can occur in various parts of the body because of damaged areas along the complex nerve pathways that are responsible for coordination of movements 

Seizures - Seizures - which are the result of abnormal electrical discharges in an injured or scarred area of the brain — have been estimated to occur in 2-5% people with MS, compared to the estimated 3% of the general population.

Breathing Problems - Respiration problems occur in people whose chest muscles have been severely weakened by damage to the nerves that control those muscles.

Itching - Pruritis (itching) is one of the family of abnormal sensations - such as "pins and needles" and burning, stabbing or tearing pains - which may be experienced by people with MS.

Headache - Although headache is not a common symptom of MS, some reports suggest that people with MS have an increased incidence of certain types of headache.

Hearing Loss - About 6% of people who have MS complain of impaired hearing. In very rare cases, hearing loss has been reported as the first symptom of the disease.

Scooterjon

Less Common Symptoms

There are many symptoms with Multiple Sclerosis (MS).  I've never met another MS patient with the same symptoms as me.  It all depends where the MS lesions are located in the brain and spinal cord.  This makes diagnosing the disease difficult for doctors and difficult for patients to believe.  I often wonder how I got this crap which has changed my life forever.  In my next few posts I'm going to describe various symptoms and how they relate to me.  My info is taken from the National Multiple Sclerosis website and my own personal stories with each symptom.  I'll be writing posts about the most common symptoms and then I'll be going over some less common symptoms.  I've had a majority of them at some time or another!

- Fatigue 

- Walking difficulties (gait) 

- Numbness or tingling

- Spasticity 

- Weakness 

- Vision problems 

- Dizziness & Vertigo

- Bladder problems 

- Sexual problems 

- Bowel troubles 

- Pain

- Cognitive changes 

- Emotional changes 

- Depression 

- Heat intolerance
- Psuedobulbar Affect

Scooterjon

Need some extra cash?  Check out my link... https://bit.ly/2Hv6S2Y

My Biggest Disability With MS

This post is about a crappy topic (no pun intended).  This is about bowels so if that kind of talk bothers you don't read this post.

Most people probably would say losing the use of your legs would be the biggest handicap with MS but I don't agree.  In the past year I've lost control of my bowels.  The bowel problem is the most challenging of all my symptoms.  It has changed my lifestyle dramatically and it's slowed to a crawl.  In fact, in June of 2016 and still continuing today I've become a bit of a recluse.  I don't know when I'm going to have a bowel movement anymore so I don't like to leave my apartment too much.  I mean I know when I have to go but I have to be on my toilet in 45 seconds to a minute otherwise I'm making a mess.  It's like when you have the flu with diarrhea except I can't run to my toilet anymore!  

I have to transfer three times before my butt hits the toilet seat. First, I get on my scooter, once I'm in the bathroom I transfer to a stool that is the same height as my toilet.  Lastly, I transfer to my toilet seat.  This all has to happen in that 45 seconds to a minute. Sometimes I don't give myself adequate time and accidents happen.  I've even woken up in the middle of the night and had to rush to my toilet for a BM. If that doesn't interrupt a good nights sleep I don't what will. Sometimes I'll be dreaming that I'm looking for a restroom and when I wake up I really do need a restroom!

Just this morning I was about to urinate and had my catheter inserted. Suddenly, I felt the urge that I was going to have a bowel movement.  Luckily, I was facing my toilet.  I only had about 20 seconds to turn around and as soon as I sat down I was having my movement. Then 30 minutes later I had to rush to the toilet again and as soon as I landed on my toilet seat I was having another bowel movement. The other problem I have is this.  It doesn't seem like I ever empty my bowels completely.  

The other bowel problem I have is constipation.  Because I don't like having accidents (my wife has to clean those up and I feel just horrible), I have a tendency to sit on my toilet for long periods of time and often nothing happens. I go into the bathroom thinking something is going to happen but nothing does. I bet I spend 2-4 hours per day sitting on my rear end in the bathroom.  I'm continually faked out by my bowels.  I'll think I'm going to pass gas but I find myself really needing a toilet or rushing to the toilet and then sitting for 30 minutes.  I wake up every morning and it feels like I better get to my toilet ASAP.  Then I sit on the toilet and nothing happens.  Now you can see why I have reclusive tendencies and I hope this all makes sense.

Ten months ago my gastroenterologist prescribed Miralax for me. I take it everyday. It helps with the bowel movements but it's not the same time every day.  I can have bowel movements any time of the day or night. It's kinda hard to plan anything.  I used to read newspapers on the toilet to occupy my time but now I do crossword puzzles.  I bet I've done 2,000 crossword puzzles in the past year and a half since my bowel troubles started in June of 2016.  The other thing all this transferring to and from the toilet does is make me more fatigued.  My MS fatigue is as bad as ever and my bowels don't help.  Stay tuned for more posts.  

Scooterjon

Self-Cathing For Urinating

I was diagnosed with the disease multiple sclerosis in the summer of 1991 at the age of 33.  I don't tell you the following info for pity or sympathy.  I accepted my plight a long time ago and realize I was just dealt a bad hand.  I just want to inform people what can happen to them with MS.  The first 20 years were tolerable but the last six have been challenging to say the least.  In 2011 I developed MS lesions on my spinal cord.  The lesions are interrupting signals to my lower body and affecting all my bodily functions below my waist.  I can no longer stand or walk.  As a matter of fact, my legs aren't good for anything.  I use my hands and arms to lift and move legs and feet at least 100 times a day and I don't do anything.  My legs are just dead weight.  Consequently, I'm on my 3-wheeled scooters 100% of the time.  The last thing I see when I go to bed at night and the first thing I see when I wake up in the morning is my scooter which I named "Ginger".

On of the things that is affected by those MS lesions on my spinal cord is my bladder.  I've cathetered myself full-time since January 2000 so I'm used to that. I'm guessing my spinal cord lesions must have been developing since that time.  If your worried about self-cathing don't be.  It isn't painful at all.  If you use a lubricant it should not be a problem. And I should know because I've self-cathered approximately 34,125 times give or take a couple hundred. I cath five or six times per day.  I've heard from people that the Foley catheter hurts when removed from the bladder.  The Foley is used for operations.  In my 17 years I've also had two bladder infections that needed medical attention.  I can tell now when a bladder infection is starting.  I get funny feelings in my genital area.  Nowadays, when I get those feelings I start drinking water. That seems to take care of it.  Usually, 32 ounces of water seems to stop my bladder infections.  For anyone that doesn't know people can now get 200 catheters per month free.  I'm on Medicare and Medicaid and I guess the government decided it was cheaper to pay for catheters instead of hospital visits.    

I'd always wondered how many times I could catheter without it doing something to my urethra.  I found out in the spring of 2014 what can happen.  When I catheter I use a lubricant called Surgilube.  I found the Surgilube tube is easier to handle than a KY Jelly tube.  I apply a little of that on the end of my catheter and it slides up my urethra easily. In the spring of 2014 though I was having trouble inserting catheters.  What had happened after 17 years of cathing is that my urethra had developed scar tissue and narrowed.  The urethra can be subject to narrowing so if you catheter be aware of that.  

Stretching the urethra assures the passage stays open and allows for urine and semen to pass through.  Stretching a urethra is called “Sounding”.  Urethral sounding is the medical use of probes called “sounds” to increase the inner diameter of the urethra and to locate obstructions in it.  So that was the problem with my catheters not getting to my bladder very easily.  When I met my urologist the first thing he did was insert a cystoscope into my urethra to view what was going on.  He then inserted three “sounds.”  To me they looked like sticks of spaghetti that come out of a box in the grocery store.  I'm not exactly sure how the sounds work but my urethra widened and cathing was easy again.  That was the spring of 2014 but it happened to me again in the spring of 2016.  This time I knew what to expect.  I went back to my urologist and had another sounding done to my urethra. 

Scooterjon