[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

[Lara]

Hello Rick.

Welcome to the NeuroTalk Support Groups.

Here's the link to the
Multiple Sclerosis Forum

You surely are a very courageous person.
I look forward to reading how you are progressing and thank you very much for posting your story so far.

[Kitt]

Welcome Rick DeSantis.

[Rick DeSantis]

Originally Posted by Lara

Hello Rick.

Welcome to the NeuroTalk Support Groups.



You surely are a very courageous person.
I look forward to reading how you are progressing and thank you very much for posting your story so far.

Thank you Lara. Could you also post my story in the MS forum for me as I am not very computer savvy.

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

[Lara]

I'll see what I can do, Rick.

Edited to ADD:

Rick, your first post has been copied over to the MS Forum.
Perhaps you can repost your own copy of Part Two on your thread there.

Here is the link to your post there.

http://neurotalk.psychcentral.com/thread208788.html
New to the forum but not MS

I hope that helps.

[Rick DeSantis]

Thanks Laura for your help. I will continue my story in the MS Forum