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Focus on ALS
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My Story -1995

I have never been a sports fan but my eyes were glued to the TV on September 6, 1995. Cal Ripken beat Lou Gehrig's record of  2,130 consecutive games breaking the record at 2,131. I felt both a sadness and triumph. Sadness for Lou Gehrig who had held the record for  56 years and taking himself out of the game he loved, and triumph for Cal Ripken who brought awareness to ALS with such power and not having to die to do it. By this he created a fund for research into ALS and other neuromuscular diseases called the Cal Ripken/Lou Gehrig Fund for Neuromuscular Research.

I had just been diagnosed with Lou Gehrig's disease and read about what an American hero Lou was and wonder how many more games he would had played had he not become ill with ALS. I believe there will be yet another triumph. There are increasing number's of basic and clinical research studies in ALS. Also the first drug to be approved for ALS in 1995 - Rilutek. I didn't have much interest in computers either but my life has changed. I now spend hours on it. I'm using a Milo soft Total Access Virtual Keyboard to write this. It's downloaded free from March of Faces "a patient driven non-profit organization, governed and operated by People with ALS (PALS) and their caregivers." Truly dedicated to bringing an end to this nightmare through turning up the volume to awareness for much needed funding for research.

I am 44, married to one of the most loving and caring man God made, Chris. I have two handsome sons Jason and Ben. Jason married the love of his life Missy and have given me three darling grandsons, JJ,  Jordan and Josh visit my Brag Book. I also have a beautiful stepdaughter Jenny and a cute, funny,  laugh till you cry stepson, Mike. When the kids are here the house comes to life!

My first symptoms of this disease were only noticed when I laid down. A tingling from my left side just under my arm to my hip. I ignored it. That was Nov.1993.

By January '94, I began having trouble walking down stairs. It felt as if my muscles were shrinking. My feet would swell and I started having "feelings of falling" (you know the kind when your dreaming of falling and that jolt that takes your breath) every night for a month! I even had the same dream for a month! it was about driving down a gravel road not aware of my destination. What's up with that? Again, I ignored it.

Now it's March 1994 and I'm having feelings of "pop corn popping" in the calve of my legs only when I sat down. It wasn't painful but very distressing. I had never felt anything like this before. I can't describe it any other way. I concluded this can't be ignored. I called my family physician.

He ordered blood tests and a physical exam.  And told me I should expect changes at my age, ouch! ( I was turning 40 in April!) He told me to exercise more and gave me anxiety pills for my "falling feelings" The "pop corn feeling" in my legs?? Maybe walking on concrete 8 hours?? No clue!

I'm 5'2 weigh 110 lbs. I worked full time in the paint department of a hardware store as a sales clerk. My job required a lot of walking, climbing stairs, walking faster (irate customer) bending, and lifting. I felt I was physically fit. I could lift four gallons of paint easily, and did often. But I did what the doctor suggested and started to exercise. Then I realized; I couldn't run!!  My mind said "go legs go" but the harder I tried the less they would move! I knew something serious was happening and it wasn't my age!

I didn't know who to call! Did I need a neurologist or an orthopedic specialist? I called a referral service and they recommended an orthopedic. I made an appointment within a week. He did x-rays and had me do simple exercises like hopping on one foot and "jumping jacks" (couldn't do that) After waiting another week for results of x-rays and showing normal, but being unable to do the simple exercises he said it could be one of three things 1.Pinched nerve 2.MS or 3.Lou Gehrig's disease. (ALS)

I was referred to a neurologist and had an appointment in a couple weeks. Still trying to exercise and not wanting to think about MS or Lou Gehrig's. I began having "charlie horses" in my legs, trouble standing from a stooped position, stumbling, and losing my balance.

At the neurologist I had x-rays, an eye exam, and an MRI to test for MS, and an EMG. The MRI and EMG were normal but the x-ray results showed pinched nerves in my neck. He referred me to a neuro surgeon. I was relieved! So happy it was something that can be "fixed" Another appointment After looking over my x-rays and all my tests came back normal, he recommended surgery within three months or risk paralysis. .....

Part 2


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Debbie Tope dx 1995, leg onset, cane