Taking Inventory

For the next several days I spent silent hours meditating on what was going on in my body and what options, if any, did I have to either slow the progression and/or make my life better. My legs were very weak and I had to use a wheelchair in the house for safety's sake. My speech was slurry and hesitant at times but then it would seem normal again. My fingertips had a strange feeling in them and it was difficult to manipulate objects. My one fear was not being able to type, research or keep in contact with friends and family.

It was absurd to dwell on the impossible but I could research motor neurons and find out what was causing them to die off. I did this and without getting technical about glutamates, I such discovered that protection of the cell was of utmost importance. Without mortgaging the house to be able to take the only approved drug, Rituzole, how else could I accomplish this feat.

I always have said there is no such thing as coincidence. And that is how I met a special man, a Biochemist and researcher,Bill Kent, only a few days later. A friend who is legally blind asked me to speak on the phone to this man who was giving her information about Parkinson's disease. I needed to give him some information she couldn't read. We got to talking and he told me about his website which identified natural foods and vitamins for hundreds of diseases. He was an avid proponent of natural healing and just the person I needed. We proceeded to have many conversations about ALS and his research gave me an assortment of ideas and the names of natural foods and vitamins I could safely take to inhibit cell death. Was there any guarantee? No. But Rituzole didn't come with a guarantee either and it claimed to do the same thing. The only difference was the many, nasty side effects that came along with it. Liver damage and a reduction of lung capacity being two of the important ones. The expense was also a negative to me.

So it was that we became partners in my quest to have more time with my family. Only time will tell. The "doing" of it was the important thing. And whatever the outcome, God Bless Bill Kent for helping me.

The Final Verdict

March 14 had finally arrived cloudy but warm. I would like to say I leapt out of bed as that would be a minor miracle in itself. Let's say I struggled to free my feet from the covers, propped myself on one elbow and pushed to a sitting position. The sounds emanating from my mouth would put a weight lifter to shame. After the vital first cup of hot, steaming coffee it was time to face the day and whatever events it would bring. The two hour trip seemed endless and despite getting lost and construction delays we made it in time with ten minutes to spare.

I was determined to stay in control as the obligatory paperwork was filled out. There was no time to consider or speculate as my name was called immediately and I toddled into the examination room. The very renowned doctor followed not more than thirty seconds later. No twiddling your thumbs in an exam room here. We were very impressed.

We shook hands and the questions began. Why was I here? Who sent me? And why did we come? Because I had a double diagnosis; a Neurologist whose name he recognized: because you are known to be the best. Several neurological physical tests followed that I had not had before. The first was what I considered a rude gesture that always disgusted me. I had to stick my tongue out and wiggle it side to side as fast as I could. This had to be a disaster. He would tell me to wiggle it faster and faster which was not going to happen but gave it my best shot. Next I closed my lips tight and he proceeded to try and pry them open. That went fairly well. The next would have sent me into gales of laughter had it not been so serious. I was asked to clench my teeth together. But, I had forgotten in our rush to get here to put in my bottom plate so there was nothing to clench except my upper teeth and my lower gums. The doctor was too nice to make a comment. Bob said the resulting grimace was hysterical. I would be doubled over with laughter remembering this total humiliation in days to come and the telling of it was even funnier.

The next set of tests checked for fasciculation's in my arms which visually could not be seen but were felt as he pressed his hands to them. Oh, and now the legs. My ghastly, spindly legs were exhibited in all their glory. The previous evening I had attempted to shave them. What a debacle ensued as I dabbed at cuts up and down my legs. So much for vanity. Looking down as the doctor tested and probed I could also see my left foot which was a deep purple color, icy cold to the touch. Like he hadn't seen that before. Yet nervcs and muscles were dying off bit by bit and I thought only of cuts and a purple foot. Ego is a strange thing.

The stomach was next. Here we go again. The dreaded spare tire image invaded my thoughts. He would be hard pressed to find a firm muscle there. Please let this end. He wouldn't ask me to present my rear, would he. No, thankfully he was finished. Bob helped me dress and brace my leg when the doctor left the room. Would there be a verdict today or more doubts and anxiety. I opted for a verdict and got one.

On his return the doctor sat next to me with pencil and paper. He drew a picture of the brain and spinal cord complete with nerves. Patiently and in great detail he showed us the differences of the effects of both HTLV and ALS. Due to my research I understood the terminology even though he tried to keep it simple. It soon became crystal clear that my long shot hope had been shattered. He didn't have to verbalize it now. The final verdict. I had ALS. It didn't come as a shock as deep in my soul I think I knew. The waiting had given me time to keep hope alive. Now it was gone.

I cried a little, more from a jaded kind of relief than anything else. Through the strength prayed for by friends and family we were able to discuss the ALS clinic held every three months. There would be no formal treatment plan as such. The only drug available for ALS which might slow down the process a little was prohibitive on a teacher's pension. However my insurance might pay or not. This would be put on hold.

The ride home was quiet each of us dealing with the truth in our own way. Once home the obligatory phone calls were made. I felt badly as it is hard for people to know what to say or do. I chose to thank them for their prayers and changed the subject. I wanted them to think of me as the same old person, not the dying friend. Let's get on with life and laughter. Time enough for tears later.

A March Wind Doth Blow

Yes! March had finally arrived. My long awaited appointment was now only two weeks away. I called and checked my appointment time and made positively sure my records had been sent. Mapquest directions were printed out and tucked away in the car. What if they canceled my appointment. What if there was a snowstorm and the roads were bad. I couldn't wait any longer for this consultation. I had to know my fate no matter what it was going to be. With all this cluttered in my mind I waited and waited.

The week before the trip I called and pre-registered to insure we could go directly to the Doctor's office. I'm sure they thought I had a drink in my hand as I stuttered and slurred through the conversation. Also had a coughing fit and dropped the phone while trying to blow my nose. The patient woman laughed when I said I had ALS and really was a very sober person. I still wonder if she believed me.

KLEENEX

I have stopped wondering why I burst into tears every so often. Years ago I blamed it on hormones. Now I blame it on ALS. Somewhere in my research I was told to expect the unexpected and took that advice with a grain of salt. Now I know why. The following is a list of occasions that inspired my tear glands to work overtime.

An empty cake box

The phone ringing

The phone not ringing

An old beat up sweater

Trying to put socks on

Trying to take socks off

The thought of selling my car

Choosing music for my funeral

Listening to "Meatloaf"

Making the bathroom in time

Not making the bathroom in time

Etc., etc., etc.

No sense fighting the tears and they made me feel so much better. Funny thing, though, and I read this somewhere, too. A fit of laughter sometimes follows which makes everything okay again.

Winter

The holidays arrived and I wondered if this would be my last Christmas. Last minute gift buying left little time to think about it. Christmas dinner had to be planned and the house needed a cleaning. Christmas Eve dinner was at Jill's house. I hated the thought of the clunky brace under my dress pants. Still a bit of pride left. I managed to keep my emotions in check which was difficult watching my grandchildren open their gifts. But I got into the spirit and finally let go of myself. The innocence and wonderment on their faces drowned out the last remnants of self pity. We were having so much fun it was not difficult at all to suppress my tears. Like magic all bad things disappear when your grandchildren are around. Friends arrived and we had a wonderful evening filled with laughter. Christmas day was also a success with more family and friends and the tasty Italian meal with all the trimmings thanks to Bob. We had made it through.

January raged in cold and seemed to go on forever. My big appointment was still two months away. The fingers on my left hand began to feel strange and fear gripped me again. Paranoia reigned as I used a hand and finger exerciser to keep them strong. It didn't seem to help. My temper flared as I tried to pick up uncooked spaghetti that had dropped on the counter. It was not enough I had to use a tool called a reacher to pick things up from the floor. Now this was an insult.

February brought more cold weather. Bob and I both had pneumonia at the same time and were down and out for over two weeks. Our daughters shopped for groceries and looked in on us or called. Bob should have been in the hospital but refused to go as he was fearful of leaving me alone. So we took care of one another. Six more weeks to go. I missed the warmth of the sun on my face. On fairly nice days, which were rare, I bundled up and hobbled out to the driveway where a chair awaited me. I basked in the warm rays as if I were on the beach. I really wasn't wishing my life away. And letting the sun wrap its arms around me with a needed hug was a huge treat. Neighbors gawked at the sight but I couldn't care less.

Each day passed as I found things to do to fill the hours. Books were scattered in every room as I attempted to read three at a time and became adept at remembering the plot of each and who was who. Closets were cleaned as I reasoned my family shouldn't have to get rid of clothes and shoes that were five years old. Instructions were given to just dump the contents of my dresser into plastic bags and don't look back. My daughters scowled and gave me yeah, right, mom look. The days passed as I waited, waited, waited.

One very bright spot on a cold, windy day, my friend Sally, e-mailed me from her home in Virginia. She and her husband, Michael, offered their home in Myrtle Beach, SC to us for a week as their guests. What a gift, I thought, but didn't consider it a viable plan. I told my daughter, Jill, about the offer during a phone conversation and was scolded for not accepting this gift from good friends. I only thought of the negatives such as toting the wheelchair with us, difficulties getting on the beach and what a pain I would be for everyone involved. Boy, did I get it loud and clear. After all I'd been through how could I not want a vacation with Bob who deserved it also. We might never have this chance again with an uncertain future. I considered that it was, indeed, selfish. By the following day the offer was accepted gratefully, plane tickets reserved and the family happy we could spend this time together. Oh, well, I thought. On April 29 Myrtle Beach, here we come! And a million thanks to the Carlo family for letting it happen. What special friends.

Footprints

I love the poem "Footprints" and have read it over and over through the years. Now it has so much more meaning to me. A higher power than I is clearly picking me up on my worst days and gently putting me down when I can again cope. How do I know this to be true? Trust me.

I was reared as a Roman Catholic and was never exposed to the various religions of the world. Religion was taught as a subject throughout grammar and high school. We never questioned, only memorized, the tenets of our faith. The good Sisters infused our young minds with horror stories that were sure to occur if you broke a commandment. Their favorite statement was "woe betide you" if you didn't listen to your parents or broke a rule at school. For years I didn't know what the words meant but they sure scared the living daylights out of me. Attending a Catholic Girls College provided the same moral structure. There I would be afforded the benefit of meeting students with an open mind. It didn't happen as most had the same background as I growing up. Moral Guidance was a biggie and I was sure they gave a course in Guilt 101.

Graduating and leaving town for a teaching job in a different state was a shock to my system. Here I was out in the world thinking black was black and white was white. Not so I soon discovered and felt the guilt permeate my being as I was faced with situations I was not prepared for. There was a constant tug of war as I began to question my faith, belief system, and the mind boggling rules of right and wrong. It was many years in the making but after reading volumes of material and learning to think for myself I came to a decision about organized religion. Thus began my quest for spirituality.

I arrived at the belief that God lives in all of us. And we all live in Him. We are put in this school called Earth to both teach and learn lessons. Sometimes the hard way. One of my children was stricken with severe diabetes at a young age. My twelve year old daughter had to deal with a rare cancer that took from her the ability to reproduce. Throughout these ordeals as a mother I learned to draw on a strength and courage that seemed to fall from the heavens. I had begun to pray in my own way. The Rosary was always a part of my life. But simply talking to the higher power I call God gave me the peace of mind needed to keep life on an even keel. I learned that it is fine to ask for an answer but it is not always the one we want to hear. Still it is an answer. A dear friend who was one of the few people I felt comfortable discussing spiritual matters with gave me some sound advice. When faced with a problem listen to your gut. What you feel in there is most often the correct and good thing to do. It never fails.

A fatal illness is a strange bedfellow. After the initial shock and grief you look at the world a little differently. Things that were of concern before have little impact on you now. Everything seems clearer and you begin to look at issues in a different way. Material blessings are great but don't hold your interest as they once did. You look at the world with all its problems and the demise of morality. We take so much for granted and never stop to say thank you. Greed and lust permeate the entire social strata from politics to entertainment. Nothing is private and personal. We are bombarded with visuals and media, pollution and noise. Our country is again at war and our sons and brothers are dying. All these thoughts are central to you now. Society is looking down the road to destruction.

These are the things I talk to God about and wonder if it will ever end. Presenting oneself at church every Sunday is wonderful for the masses and I refuse to feel guilt that I do not attend. My church is in my heart and soul and there it will stay until the end of my life. If my God should judge, let it be on who I am, how I have lived my life and what I do for others. I trust his plan for me has in some way been fulfilled. I trust He will help me die with grace and dignity. I ask strength for my family. This is my one fervent prayer.

Amen

Laughter Always Wins Out

There is a balance in life now that I don't care to upset. Normalcy is necessary for all concerned. Life goes on as it should with all it's ups and downs. I have friends who are ill and dying. Concern for them and the help I can give are important to me. Support for their families is imperative. The giving always comes back in some shape or form. Having fun with family and friends can make the spirit soar. I meet regularly with friends who know and love me. They are concerned as friends should be. We talk about what is happening with my body. That over, we are back to the business at hand which is enjoying the moment, eating, reminiscing, joking and solving the problems of the world. I have been having speech problems over the past month. Hesitation and slurring of words is common. My daughters get a kick when it happens. In my frustration to get a word out correctly I will stop and let out some "loose language" which is always articulated perfectly. It happens so often my son-in-law swears I have Turret's Syndrome. We also have some dark fun making up the signals I will use if ever I lose the ability to speak. One blink of the eye for yes and two for no. Roll the eyes to signify laughing. In a comic way I tell them about my preference for the fetal position while lying down and how many pillows to use. Leave one foot out of the covers. Dress me in pajamas, not nightgowns. Make sure the bottoms are not too tight on my behind. No more bras. Leave my bottom teeth in the drawer. The list goes on and on and so does the laughter. A bit of levity is more than desirable even though the conversation is somewhat serious. This is our way of getting through important future issues. Funny but not so funny.

My husband and I have learned to really listen to one another. I need to know how he feels and give thought to his needs. He patiently holds me when I cry and hears what I'm trying to say. He tends to my every need and makes life much easier. Physically I have to depend on his strength. If I say thank you a hundred times a day it would never be enough. We are partners and need to be strong for one another. There is no other way. God bless my family and dear friends. God bless old friends who write letters and send angels and books and give support from afar. God bless them for their unending thoughts and prayers and hopes. It makes the journey bearable.

Home Again, Home Again

Trying to get an appointment within a reasonable length of time was akin to sweeping the sun off the roof. The intervention of my doctor held no importance. I was just another number in an ocean of numbers. My appointment was four, long months away. Cancellations were rare but I was on the list.

Days and weeks seemed endless. It was harder to stand for any length of time. After two months my legs were becoming weaker. I was fitted with a brace for the foot with the offensive "foot drop". It would allow me to walk with less fear of falling. It fit from the bottom of my foot to mid-calf. I had to buy sneakers a size larger to accommodate the brace. Now the right shoe was too large and two innersoles were needed so it wouldn't flop up and down. Walking was a little easier even though my feet were clunky and strange looking. Shoes with Velcro straps were summarily dismissed as old-lady shoes because that's how they appeared to me. My daughters, years ago, had forbidden me to wear anything with polyester and shoes with Velcro fit into this category in my mind. My husband with great fortitude has to force my foot and brace into the laced sneaker. No complaints from this good man. I know he must love me despite my idiosyncrasies.

In bed at night I feel the fasticulations in my legs which tell me in no uncertain terms that my muscles are dying. I pray they stay only in my legs. One night I felt them in my left arm and hope fades. I walk now like a toddler trying out his legs. Short steps while trying to keep balance. Rising from a chair takes much energy. Exhaustion is part of ALS and care must be taken to rest between activities. I sleep for hours at night and awaken weary...too tired to dress and start the day. Yet there is no giving in or so my mind tells me. I laugh and joke with my children and grandchildren but will suddenly come to tears but hysterical laughter usually follows. This is also symtomatic of ALS.

Hope holds my heart and soul together but is slowly dwindling. I can feel it in the center of my being. Moods swing from high to low and confuses me. I am tired of dancing the waltz of faith and hope. Thoughts of death wrap around my mind. I see it, feel it, live with it. I pray not for the miracle of a cure but for more time with my family. Grief takes hold as I feel how very much I will miss them. It is right and just to grieve for one's life and everyone left behind.