[Rick DeSantis]

I just want to share my story and how I decided to battle MS. My hope is it will be an inspiration to all who cares to follow my thread.

I am a male 68 years of age and I have had MS for at least 20 years. To look at me today you would think I was extremely fit and very young looking for my age but I wasn't always like that. MS left me an invalid for almost a year and a half.

I was always very athletic but short at 5'4" but I never let that stop me from playing all sports. I was a very quick and powerful little guy who just never quit on anything.

I was in my middle 40's when I told my wife, a Trauma Nurse, that something was wrong with me. I wasn't sick but I knew something was wrong. I was just getting weak and beginning to stumble. Off to the hospital we went. I passed every test with flying colors and was sent home. In my heart I knew something was just not right.

A few days later I wakeup numb on my left side so off to the hospital again. My wife is thinking heart attack. Again all test on the heart are negative. I then had a MRI of the brain and hundreds of tiny lesions were found so they thought I might have suffered a series of mini strokes. I was told the numbness would remain on my left side. Home I go again

Soon I was numb from the neck down on both sides of my spine and barely walking. Linda takes me again to the hospital and tells the Dr's that I would not be going home until they found out what was wrong. I went through the mill for 5 days of testing. Finally a spinal tap was given and large lesions were found on my spine.
By this time I can no longer walk or control my arms and have trouble speaking. The whole team of Dr's came to my bedside with my wife and told me I had a severe case of MS. My reply was great news now make me better. Linda grabbed my hand and was trying to hold her emotions in check when they told me MS was an incurable disease and not much could be done.
After a few days of steroid infusions I was being discharged. They wheeled me out in a wheel chair of course because I couldn't walk. Once they placed me in the car I noticed them put the chair in our suv. I told Linda I would never sit in a wheel chair. Her response was "But honey you can'y walk". My response was "Maybe not today but I will walk again and that's my promise to you. Please get me a walker instead".

After a few visits to the Neurologist I began daily injections of Copaxone and I began to educate myself on this debilitating disease. At this point I need help with everything from eating to dressing myself and everything in-between.

OK here was my plan.
I have always heard that we only use a very small portion of our brain. So somehow I would create new areas to accept information. My first battle plan would be intense concentration and focus to grab a class on the kitchen table.

Linda took off three months of work to stay with me because she knew how intense i could be at times. I sat at the table of course with my hands in my lap and a large empty glass in front of me. I focused on that glass for most of the first day with only a twitch of my right hand. You know me it was the same drill every day for hrs. Just what else did I have to do.

One day after about two solid weeks of this intense and I do mean intense focusing on that glass my hand actually moved! In my heart from that moment on I knew I was on the right track and I double my thought processing efforts. In bed at night began to visualize grabbing that glass for hours. I at this point was totally obsessed.

A month now has gone by and I'm still going at it harder than ever and making some progress. I had actually put my hand on the table but nowhere near the glass. Then one day it happened. I grabbed the glass!!!
I screamed for my wife and we both just sat there and cried. I'm actually crying now, it's one of those moments in my life I will never forget.

Much more to come

[Rick DeSantis]

Originally Posted by Rick DeSantis

I just want to share my story and how I decided to battle MS. My hope is it will be an inspiration to all who cares to follow my thread.

I am a male 68 years of age and I have had MS for at least 20 years. To look at me today you would think I was extremely fit and very young looking for my age but I wasn't always like that. MS left me an invalid for almost a year and a half.

I was always very athletic but short at 5'4" but I never let that stop me from playing all sports. I was a very quick and powerful little guy who just never quit on anything.

I was in my middle 40's when I told my wife, a Trauma Nurse, that something was wrong with me. I wasn't sick but I knew something was wrong. I was just getting weak and beginning to stumble. Off to the hospital we went. I passed every test with flying colors and was sent home. In my heart I knew something was just not right.

A few days later I wakeup numb on my left side so off to the hospital again. My wife is thinking heart attack. Again all test on the heart are negative. I then had a MRI of the brain and hundreds of tiny lesions were found so they thought I might have suffered a series of mini strokes. I was told the numbness would remain on my left side. Home I go again

Soon I was numb from the neck down on both sides of my spine and barely walking. Linda takes me again to the hospital and tells the Dr's that I would not be going home until they found out what was wrong. I went through the mill for 5 days of testing. Finally a spinal tap was given and large lesions were found on my spine.
By this time I can no longer walk or control my arms and have trouble speaking. The whole team of Dr's came to my bedside with my wife and told me I had a severe case of MS. My reply was great news now make me better. Linda grabbed my hand and was trying to hold her emotions in check when they told me MS was an incurable disease and not much could be done.
After a few days of steroid infusions I was being discharged. They wheeled me out in a wheel chair of course because I couldn't walk. Once they placed me in the car I noticed them put the chair in our suv. I told Linda I would never sit in a wheel chair. Her response was "But honey you can'y walk". My response was "Maybe not today but I will walk again and that's my promise to you. Please get me a walker instead".

After a few visits to the Neurologist I began daily injections of Copaxone and I began to educate myself on this debilitating disease. At this point I need help with everything from eating to dressing myself and everything in-between.

OK here was my plan.
I have always heard that we only use a very small portion of our brain. So somehow I would create new areas to accept information. My first battle plan would be intense concentration and focus to grab a class on the kitchen table.

Linda took off three months of work to stay with me because she knew how intense i could be at times. I sat at the table of course with my hands in my lap and a large empty glass in front of me. I focused on that glass for most of the first day with only a twitch of my right hand. You know me it was the same drill every day for hrs. Just what else did I have to do.

One day after about two solid weeks of this intense and I do mean intense focusing on that glass my hand actually moved! In my heart from that moment on I knew I was on the right track and I double my thought processing efforts. In bed at night began to visualize grabbing that glass for hours. I at this point was totally obsessed.

A month now has gone by and I'm still going at it harder than ever and making some progress. I had actually put my hand on the table but nowhere near the glass. Then one day it happened. I grabbed the glass!!!
I screamed for my wife and we both just sat there and cried. I'm actually crying now, it's one of those moments in my life I will never forget.

Much more to come

Part Two
Well even though I did grab the glass I could not pick it up and I couldn't tell I even had it in my grasp. My severe numbness I guess had something to do with that but I didn't mind one bit that glass was in my hand. A few days passed and I was able to lift the glass. I did drop it many times but I was inspired by my progress. I used the same thought process to grab a much smaller object, a fork. So you see where I am going here. I knew I had to reteach my brain to do everything I once did and I really didn't care how long this was going to take but I would make it happen. After all I did make a promise didn't I.

My next visit to the neurologist was quite interesting. I explained to him just what I was doing about my illness and my little but huge to me accomplishments but all he could do was just give me a blank stare. I think he thought I was a little crazy. Finally he said, well if this works for you than keep up the good work. My visits at this time were monthly.

Things that took two hands such as buttoning a shirt or tying a pair of shoes took longer as I was finding out my left side was very unresponsive much worse than my right. Linda now had returned to work as I somewhat in a very primitive way could get along on my own. Little did she know what I planned next.

At this time I could really only justdrag myself along in my walker so out the front door I went. My real goal of course was to teach myself how to walk. My right leg, I had just enough quad to lift my leg just a few inches, my left leg nothing at all. Just something attached to my body that I just dragged along.
This is how I started
I would move the walker forward lift my right leg as much as I could and the best way to put it, just flop it forward. It took all I had to try and drag my left leg forward to meet the right. I only got to the end of the drive way that first day and had to rest quite a bit before I began my journey back inside the house.

I kept my journey outside to myself as I knew my wife was certainly not going to approve of me wandering outside on my own. My approach to trying to walk again was just the same as grabbing that glass, just shear determination. Every day I would do this four or five times with a lot of rest in-between as this was very exhausting now not only mentally but physically as well.

Linda worked three 12 hour shifts and off four days which really worked out well. On her first day home I asked her to help me to go outside. Once outside she left me standing there with the walker and went on out to the mail box. This was my chance. I began my little routine of throwing and dragging myself along. I didn't get far at all when she was already on her way back. I asked her to wait that I was coming. It truly seemed like I was never going to get there but finally I made it. I told her I had to rest before I could try to get back and that she could go wait for me at the door. Not on your life I'm going to stay here right by you was her reply with a huge smile and gave me a sweet little kiss.

I have only just begun much more to come

[Jules A]

Welcome to the board and thank you for sharing your story.

[Rick DeSantis]

Originally Posted by Rick DeSantis

Part Two
Well even though I did grab the glass I could not pick it up and I couldn't tell I even had it in my grasp. My severe numbness I guess had something to do with that but I didn't mind one bit that glass was in my hand. A few days passed and I was able to lift the glass. I did drop it many times but I was inspired by my progress. I used the same thought process to grab a much smaller object, a fork. So you see where I am going here. I knew I had to reteach my brain to do everything I once did and I really didn't care how long this was going to take but I would make it happen. After all I did make a promise didn't I.

My next visit to the neurologist was quite interesting. I explained to him just what I was doing about my illness and my little but huge to me accomplishments but all he could do was just give me a blank stare. I think he thought I was a little crazy. Finally he said, well if this works for you than keep up the good work. My visits at this time were monthly.

Things that took two hands such as buttoning a shirt or tying a pair of shoes took longer as I was finding out my left side was very unresponsive much worse than my right. Linda now had returned to work as I somewhat in a very primitive way could get along on my own. Little did she know what I planned next.

At this time I could really only justdrag myself along in my walker so out the front door I went. My real goal of course was to teach myself how to walk. My right leg, I had just enough quad to lift my leg just a few inches, my left leg nothing at all. Just something attached to my body that I just dragged along.
This is how I started
I would move the walker forward lift my right leg as much as I could and the best way to put it, just flop it forward. It took all I had to try and drag my left leg forward to meet the right. I only got to the end of the drive way that first day and had to rest quite a bit before I began my journey back inside the house.

I kept my journey outside to myself as I knew my wife was certainly not going to approve of me wandering outside on my own. My approach to trying to walk again was just the same as grabbing that glass, just shear determination. Every day I would do this four or five times with a lot of rest in-between as this was very exhausting now not only mentally but physically as well.

Linda worked three 12 hour shifts and off four days which really worked out well. On her first day home I asked her to help me to go outside. Once outside she left me standing there with the walker and went on out to the mail box. This was my chance. I began my little routine of throwing and dragging myself along. I didn't get far at all when she was already on her way back. I asked her to wait that I was coming. It truly seemed like I was never going to get there but finally I made it. I told her I had to rest before I could try to get back and that she could go wait for me at the door. Not on your life I'm going to stay here right by you was her reply with a huge smile and gave me a sweet little kiss.

I have only just begun much more to come

Well another month gone by and it's time once again to see my Dr. Of course I can't drive, matter of fact even with Linda helping it's really quite a chore just getting into the passenger seat let alone trying to get out. When my name was called and Linda was helping me down the hallway to his office I stopped and told my wife I wanted to enter on my own. As I entered the doorway with my walker my Dr. was reading my charts. When he saw me entering he immediately stood and had a big smile on his face. Quite a different reaction than my first visit. As Linda helped me get from the walker to the chair he said, Rick now tell me again just what are you doing to make these changes.

Back at home two things were bothering me. First the medications I was on to control the pain and numbness three times a day were wearing me down and by 5 0'clock or so I just felt lousy and not able to accomplish anything. I decided on my own to stop cold turkey. That was a mistake even with my self conviction I could not handle the pain. Next step was to slowly ween myself off the drugs. First two time a day for a week then one time a day and so on. It took about three weeks but I was drug free except for my Copaxone injections and feeling better.

My second thing was walking again. I realized I had to be able to stand on my own before I could even think of walking and that meant somehow getting information to my left leg which at that time was just a limp limb.

So in-between my trips down the drive way I would just stand in the walker and try to let go. At first this was impossible but as the days went by even though I still could not stand alone the amount of pressure I had to apply to the walker while standing was decreasing. Yes you are right another month gone by and I am standing on my own. Now it's really time to get to work.

[Rick DeSantis]

Almost a year now had gone by and I have literally wore off the back legs of one walker. I was then walking about five miles a day and I was getting some response out of my left leg. It was beginning to act like my right leg did when this all began.

At just about 1 1/2 years into my illness I had doubled my miles of walking to 10 and getting better all the time. I was on my way back to the house on day and I saw Linda at the mail box maybe 100 yards away. I yelled to say hi and as she waved back I threw the walker to the ground. I started to walk on my own!!!! It certainly wasn't pretty but I was moving. It took me quite a while to cover that 100 yards but I did it. It was quite an emotional embrace we both shared at that moment. I never used the walker again but kept it to remind myself of where I once was and how far I have traveled.

[Rick DeSantis]

Over the next 15 years or so I just kept at what I was doing and improving all the time. Knowing that MS eats away at you every day I decided to start exercising. At first just a few push ups every other day. My theory was if Ms wants to steal part of me I will put two parts back. My workout today at 68 years of age is 800 to 1000 push ups every other day in various positions to hit as many body parts as possible. One day soon I will go to a gym and start lifting weights again. It will be my first time in almost 20 years and I can't wait to see how it goes.

I drove to see Eddie, my neurologist, last week. We have been on a first name bases for several years now. We usually talk about fishing not MS but this time I did have a question. I asked when is MS going to raise it's ugly head and strike back at me. Rick I can't answer that question. MS is a very unpredictable disease and in your case even more so. One thing for sure it is very good that even though who and what your are today you realize you still live with MS and you must respect that.

Every day is a great day and I always look forward to whatever tomorrow may bring. For me, "Life is a series of choices". I could have chosen 20 years ago just to sit in that chair but that just wasn't me.

I hope is that maybe someone may be inspired by my journey and find their own way to deal with this unforgiving disease.

[SallyC]

Hi Rick and welcome to our little den. Thank you so so much for sharing
your continuing story with us. It is most inspiring to our members just
starting out, as you were some 20 years ago.

I'm a few years older than you, let's just say I was 5 yrs old when you were
born.. The diff. is, I was only 23 when I had my 1st symptoms of MS. Mine
didn't come on as strong as yours and I wasn't forced to seek a DX until I
was 35.

To this day I use your, mind over matter, method of keeping it moving. Move
it or lose it. I chose to use a scooter all the time now, but not because I
couldn't walk, but because I was falling a lot and after my DH died and
because of aging, I couldn't get back up by myself anymore.

Keep it going Rick and "May The Force Be With You"..

[Starznight]

As Sally said, thank you very much for sharing. As a newbie to both this disease and in life by y'all's yardsticks . I am always impressed by the elasticity of the brain. A glorified gelatinous battery but how remarkable it's capabilities are.

Leaving aside the tiny sparks created to transmit information to limbs, or more impressive how a little energized neutron can communicate information externally, received and analyzed by another's energized neutron! Language! It's fascinating just by its everyday processes, but injury to the brain is where the awe-inspiring becomes something so much more.

We truly do use so much more of brains than earlier believed, the whole 10% is a myth, and yet our brains are still able to tap into varied areas, sharing space and information, and somehow for a lot of folks out there, not getting confused by itself in the process, when injury or disease mandates.

Of course the only way it can manage to do so is pretty much as you described... Force it! Stubbornly refuse to let your own brain give you no for answer. I really wish it was only my brain telling me no, unfortunately MS took its toll on my ligaments and tendons before the doctors could catch it, I'm just hoping to avoid anymore soft tissue damage now. So the body's pretty well been put through the ringer, but when it comes to the rest, memory, creativity... I'll be sure to continue my quest to keep the mind sharpened.

Heck I overcame dyslexia by memorizing the Oxford English Dictionary (the tome version, not the paperback ) and even took it further to learning German, French and (still working on) Japanese. So I'll be sure to keep those little neutron bouncing around and plowing through any roadblocks.

[NurseNancy]

wow rick, that is some inspiring story. i applaud you.

welcome to NT. i hope to hear more about you altho that is plenty.

i'm an RN too. i worked NICU for 35 yrs and was dx'd with MS at 53. i spent 10 yrs on copaxone and i'm off it now. thankfully i've been stable and am independent. and, i still drive.

again, welcome.

[Rick DeSantis]

I have tried a lot of things but I don't have the courage to stop taking Copaxone. Because I am very fit my percentage of body fat is very low. Trying to find an area to inject is very hard and quite painful at times. Such a small price to pay to be where I am today.

My Dr. explained to me once when I asked why I get tired so early in the evening. He said, Rick everything you do your are forcing your mind to process. All those involuntary movements that the rest of us have are not there for you. So as the day winds down you my friend are pretty mentally exhausted. That actually made good sense to me and helped me cope better with my situation.

I have also learned, believe me, the hard way that when MS speaks listen and rest. Tomorrow is always another day to do battle. I have learned to always listen and stay in touch with my body.