My story [2]
"I'm damned if I do and damned if I don't". Don't I risk paralysis with neck surgery!? I was relieved that it wasn't MS or Lou Gehrig's. But I was frighten about the surgery. I decided on a second opinion. I saw another neurologist with the same results and same prognosis.
My condition worsened. Walking is becoming hazardous. I started using a cane.
I often wished I didn't have to work but I was thinking more like WINNING
THE LOTTERY!
Be careful what you wish for) :0) I felt the surgery was my only hope
from being paralyzed. I agreed to neck surgery. October, 1994 would
be my first surgery.
I quit work in September a month before surgery and thankful I had insurance. I smoked about a pack a day then and had quit two weeks prior to surgery by the advice of the doctor. I knew I'd need time to heal from surgery. I felt I made the right decision.
Surgery, I survived. I went home feeling good about getting that behind me and looking forward to throwing away the cane and get on with life. But things didn't improve by February 1995. I agreed to another neck surgery to relieve what was thought to be pressure on my spine causing my "funny walk" and the "pop corn popping" in my legs. But still smoke free! :0)
I was so terrified when I knew things began to worsen. March, 1995: I started to lose bladder control. The neurosurgeon prescribed baclofen for neck spasms which are common after surgery and percocet for pain, physical therapy and ditropan for bladder control, but by his reaction of the new symptoms, he realizes he has made an error and refers me to a new neurologist.
Now teetering between optimist and pessimist, I chose to pray! This time I prayed for strength, courage and acceptance. While waiting for my appointment with the new neurologist, I began physical therapy three times a week. My husband, Chris has been by my side from the very beginning. Taking me to therapy mornings and then going to work. He worked second shift. I have been truly blessed to have his love and devotion. I've never known true love until becoming ill. I took so much for granted. Chris has given up his life to care for me and has become my voice, my arms, my legs, (No he won't shave his legs!) Laughter brought us together and is keeping us strong.
April, 1995, I saw the new neurologist. She ordered more blood tests, another EMG, spinal tap, another MRI, and another eye test. I'm becoming more off balance ( mentally and physically). The test results came back inconclusive but she suspected MS. She then scheduled me an appointment to the Cleveland Clinic Mellen Center at Cleveland, Ohio in three months to confirm her suspicion of MS and told me about a new drug for Multiple Sclerosis .
Chris and I were at the library almost daily reading everything about MS. I read about Lou Gehrig's disease but dismissed it, loss of bladder control was not a usual symptom for ALS (but is for MS.) The baclofen has helped with the muscle spasms and the ditropan has helped bladder control.
Both our families and friends and our faith have given us a tremendous amount of support. I love them with all my heart and am eternally grateful. If not for them, I wouldn't have made it through this.
July, 95' with all my x-rays in hand we went to the Cleveland Clinic Mellen Center to confirm the diagnosis of MS. I wasn't there long. I explained what was happening to me. The "pop corn popping" in my legs. He understood and told me he didn't think MS was the cause. He sent me to see Dr. Hiroshi Mitsumoto in another part of the clinic.
Dr. Hiroshi Mitsumoto at that time was the Medical Director of the Cleveland Clinic ALSA Center and Chair of ALSA's Medical Advisory Committee.
I'm impressed! But more frightened!
He did a family history, more blood tests, and another EMG but this was a little different. The test took about two hours. I was sent home and would need to wait for test results. They needed to rule out other diseases.
I never told my mother about what was now suspected. She was sick with emphysema and on oxygen. I couldn't burden her with my illness and I began seeing and talking to her less. I was in emotional turmoil. I couldn't talk to anyone with out crying. My family agreed not to tell her. They have helped me through the beginning and continue to help me. I am grateful for all their love and support. I can't say it enough.
I became a grandmother, thrilled with the thoughts of having little hands to hold and all the fun and laughter little ones bring yet I was heart broken that my arms are getting weak. I'm not able to hold him much.
I know I won't be able to baby sit him or take him to do fun things. Thinking of what was ahead for me and trying to cope with this took away a lot of precious moments with my family. The phone rang. It was a doctor from CCF and the words " probable" AMYOTROPHIC LATERAL SCLEROSIS better know as Lou Gehrig's disease the name echoed for ever it seemed.
I knew from what little I read, it was terminal. I prayed daily for this not to be MS. (when praying... be specific! :O)
I had to be in Cleveland Monday to see Doctor Mitsumoto. It's been eleven months since my first neck surgery and I hadn't had a cigarette but Sunday night I wanted one badly! I remember things by events like (quitting cigarettes, turning 40, becoming a grandmother) It's been a total of twenty months since that tingle in my left side that I ignored.
Late August 1995 - Doctor Mitsumoto explained what was happening to my body and gave me a name for those "pop corn popping" legs. They're fasciculations, and are characteristic in most ALS patients. He also told me they were having clinical trials for BDNF (brain- derived neurotrophic factor) .The trial was jointly sponsored by Amgen and Regeneron Pharmaceuticals of Tarrytown, N.Y. The trial, in which the drug was administered subcutaneously, (just under the skin) included 1,135 patients at 38 sites. Each patient was treated with either BDNF or a placebo and lasted nine months. I qualified for the study. It was in the phase three, which would end September 1996.
I was terrified! But I had hope in the drug study.
I started the drug study in October, 1995. We drove 140 miles to and from the Cleveland Clinic Foundation (CCF) once a month since October, five months till the end of the study. I had mild itching and redness at the injection sites and some diarrhea as far as side effects.
I notice other patients carrying the little igloo coolers where we keep our little boxes of 31 vials of BDNF in. Some were walking in haste, showing no signs of weakness but I soon realized they weren't able to speak. They carried a pad and pencil to communicate. I thought how can they find a cure for something that effects people so differently?
June '96 The trips to CCF are every three months now. My legs are shaky and the fear of falling only makes them tremor more. Through MDA, I received an electric wheel chair. I'd become one of Jerry's kids. I had a lot of mixed emotions. I am so grateful to the MDA. I finally felt safe again and independent.
September '96- The study is finished and all the participants are receiving the drug as a compassionate use while waiting for FDA approval. There wasn't any change in muscle strength. But I had a positive outlook. I still had Hope.
January 97'- I receive a call from CCF to stop taking the drug. Amgen ordered the drug returned. Results were showing no significant benefit Several experts have suggested that neurotrophic factors will have to be injected near the brain or spinal cord to be effective, because little of these substances can reach the central nervous system (brain and spinal cord) when they are injected under the skin at the periphery of the body. I was disappointed but not hopeless.
April 97'-Amgen and Regeneron will pursue the study of BDNF in ALS, but doctors will inject the substance into the fluid surrounding the spinal cord (cerebrospinal fluid, or CSF). This form of drug delivery is called "Intrathecal," or BDNF (IT). The drug will enter the fluid via an access port implanted under the skin in the abdomen. The system is manufactured by Medtronic of Minneapolis.
By this decision patients were allowed to continue with the BDNF as a compassionate drug. I chose to continue with the subcutaneous injection. A few patients were showing slight benefit, but still questionable.
May 97'- I begin to notice a change in my voice. My speech became slurred. I haven't had any "falling feelings" for several months. I'm starting to have fasciculations in my arms but they're not as aggressive. (It's a constant reminder that I'm dying.)
February 98'- I was choking on everything and was dehydrated. I spent four days in the hospital from not drinking and eating. I decided to have a peg tube placement. This was something I said I would never have done but I'm glad I did. I can still eat by mouth but not enough to maintain bodily function. The procedure took maybe fifteen minutes. I spent one night in CCF.
The feeling of helplessness, is debilitating. Days of feeling my "spirit leaving my body" were frightening yet peaceful. My thoughts of heaven became more frequent. And soon in the mail came a gift, a book by, Joni Eareckson Tada called "Heaven... Your Real Home" I had never heard of Erica's story. I didn't ask for a book. Who sent this? I didn't even know the lady who sent it. But, I was so very grateful, it brought me peace, comfort and Hope. This was the beginning of what would be a never ending show of true love. "One heart beating for another"
I starting receiving comforting letters and cards, more books from my family, friends and people I haven't met. More hope, encouragement, and love.
Never deprive someone of hope ~ it may be all they have.
I can only walk with help by someone (we call it the Gehrig waltz) :O) Since receiving Medicaid I qualify for help through a Waiver program that allows me to have a caregiver two hours a day five days a week. (This gives Chris a break.)
There are communication devices that can speak for you, or help type your thoughts or needs. You can download some for a free trial. The cost varies. Check out the Communication page for a list.
I'm now using an on screen key board called My-T-Soft AT and Words + to write, speak and use the computer. My computer is becoming my "life line". The Central & Southern Ohio Chapter in Columbus, Ohio "loan closet" let us try Monologue 97. I met some incredible people who will stand by you and help you through the rough days. (I think they're Earth Angels) For information on ALS Association chapters across the country, visit www.alsa.org
I use a BiPAP machine called a Quantum PSV. The machine has been a help to me even though the mask can be uncomfortable. I don't know the exact cost of my machine but $1500 is a starting point. With a qualifying diagnosis and physician's prescription, this item is covered by Medicare and Insurance.
This is a cruel disease as it's slowly taking away my ability to walk. It's taking my voice, my ability to dress myself, bathe myself, and feed myself. I can't brush my hair or scratch my ass. It's taken away my strength to return a hug, a kiss, and may eventually take my breath away. But! I will not surrender my faith, my love, my hope, my courage or my laughter.
I will not let this cause me to feel anger or hate. I will not allow this disease to cause me to become a bitter person. I will use the love and laughter, courage, hope, and faith that many have used to get through each day. I have never been angry at God or any of the doctors for misdiagnoses. I know it's a difficult disease to diagnose. I've never asked "Why me?" Who am I to think I'm "too worthy" to be spared with this or any kind of horrible disease? I pray to God daily for a humble heart and thank him for allowing me to be chosen and not my sons, my husband or my siblings or anyone else in my life. I give thanks to God for a never ending life in Heaven that is promised to all who believe and accept Christ as their Savior.
I have another site called "FiddleStix" where I am following one of Morrie's words to live by: "Be occupied or focused on things and issues that are of interest to you. Remain passionately involved in them."
Read more about how I cope with ALS and From the outside looking in is where I spend my days. The pages are slower due to graphics.
I am literally "Living On A Prayer"
and antioxidants and vitamins and...:O).........
Thank you for visiting my sites. Thank you all for your kindness, encouragement and generosity. Stay strong in faith and never lose Hope.
If you learn from your suffering,
and really come to understand the lesson you were taught,
you might be able to help someone else who's now in the phase you may have just
completed. Maybe that's what it's all about after all
~Anonymous~