As hard as it is to believe, it has been nearly ten years since my son, Jeff, graduated from College! He is married now, with a family all his own. But that doesn’t stop me from thinking about the powerful influence he has had on my life ever since he was born, but especially from the age of four which is when I had two spinal surgeries within 24 hours. The surgeries left me paralyzed from the shoulders down; all I could do was shrug my shoulders. 

That’s when Jeffrey, age four, charged himself with the mission of helping me get better by helping me (literally!) with my physical and occupational therapy.

After my discharge from the rehab hospital, I had therapists come to my house during the day. Once I returned to work, they would come after their workday (and mine) was done. Jeffrey would watch quietly while the therapists showed us different exercises. Once they left, Jeff remembered all the exercises and helped me with each one. He would patiently work with me on each exercise until I was able to do at least some of it on my own at which time he would change roles and become my cheerleader! I can hear him as if it were yesterday, “Yay! Mommy you’re doing it! You’re doing it all by yourself!”






Those words did more to lift my spirits and increase and intensify my determination to work as hard and as long as was necessary to get as much return as possible. A child’s faith is unlike any other; it is unfailing in its sincerity and in its completeness; it’s depths are inmeasurable. Jeffrey’s faith in me and his words of encouragement helped me to achieve goals that the doctors in the rehab hospital told me were out of the realm of possibility. Even today, as I think back,to what a little boy did for his mom brings me to the verge of tears but it also brings a smile to my face!

Those days bonded us like nothing else could; but as he grew up, he also helped me overcome both physical and attiudinal obstacles that I faced from time to time (and sometimes, day to day)!
 
Three years after my return to work and when I was driving again, he would sometimes go food shopping with me.  He helped me get things from the lowest shelves or wherever I couldn’t easily reach. We made it fun and he got to pick a special dessert—usually chocolate pudding-- which we made when we got home.
  


These are such fond—and fun—memories, reinforcing my belief that good can (and does) come from bad, leading me to ask the question that remains,  the one that is the title to this blog: How do you repay kindnesses? How do you repay acts of selflessness? Or more directly, CAN you possibly repay such a debt?
Is it with gifts? Can a tangible gift actually repay someone for their generosity of spirit? 



The former can never truly be made to be the equivalent to the latter. But that didn’t stop my husband, Walter, and I from trying!
 

To read about what we did and Jeffrey’s response to our plan in my companion story, “Paid In Full”. The link is:

http://www.christopherreeve.org/site/c.mtKZKgMWKwG/b.8557363/k.8BFF/Paid_in_Full.htm

Every year for my son's birthday I have written a note for him in his card. I remember writing in his card for his 18th birthday. It said something like, “Where did eighteen years go??"

He recently turned 31. Now I can't figure where the 13 years since I wrote that message have gone! They say that time goes by faster as you get older. And I am living proof of that. . .

All I know is in what seems like a whirlwind of events and speeding years, Jeff graduated elementary and middle school, then high school and college. He  went back for an extra degree, got a job, bought a condo and left home.

Parents raise their children to become independent and self-sufficient with the hopes they will live happy and successful lives. This was true in our family, as well.

When Jeff told us that he was putting in a bid for a condo that was closer to his job, my husband, Walter and I were pleased and very happy for him! Then as the reality of the situation dawned on me, I was also saddened. I needed time to adjust to this major change in all of our lives—lots of time!

When my spinal cord injured occurred, Jeff was four years old. At that young age, he became an unofficial part of my rehab team—and probably the most effective one, at that.




I thought back to times during those early, dark days when Jeff and Walt visited me during my stint at the rehab center. Jeff did his best to cheer me by telling jokes and even memorizing the words to a song that was popular at the time, “That’s What Friends Are For”.  Note: From that day forward, this song has been my all-time favorite and we “danced” to it at Jeff and Katie’s wedding).

When I got home after  being discharged from rehab, Jeff went to day camp for a few weeks. He even asked the counselor who led the exercise group if he could give him exercises to do with me to improve my hands.

These memories and so many more came back to me in a flash.

Now, Jeff is married and has a daughter of his own.




The link to my story is:
 
http://www.christopherreeve.org/site/c.mtKZKgMWKwG/b.8382721/k.1DC/Condolences_Letting_My_Condo_Condor_Soar.htm
 

In my mind’s eye, I planned all the things we could do together as she grew up. But then reality loomed large in front of me and it stumped me. How was I going to interact with her? As an infant, it was easy enough to hold her and interact with her (if she wasn’t sleeping!). I feared that as she got older I wouldn’t be able to hold her and then what would I do?  What would happen to the very special relationship I dreamed of having with my sweet Karaleen?

Well, I should known better. Not to worry! Karaleen is a very sweet and pleasant toddler. She  greets each day with her big beautiful smile. When she sees me she screams out, “Meemaw!” --(her very own name for me!).
She comes up to the wheelchair and tries to lock or unlock the chair. While saying over and over., “Meemaw! Meemaw!” in what I can only assume is her attempt to have me go whatever direction she is currently headed.


During my last two visits with her, we watched her favorite show, “The Mickey Mouse Club”; she entertained me by dancing and clapping her hands when “Mick” Mouse ( as she calls him) and his friends end up back at the clubhouse  and dance and sing. She joins right in! 

Somehow, I think she knows instinctively that I love books—reading and writing them. After she was finished dancing,  she grabbed one of her books,  clambered up next to me on the sofa and pointed out the people and objects pictured on the different pages. When she was finished doing that, she turned to the front of the book again. This time,  she pointed at  the words and began “reading” to me. Of course, I didn’t understand what she was saying. But I understood what she was doing. She was making our time together accessible! Love has a way of doing that.

Karaleen is, in a worrd, simply amazing. When Jeff and Katie call or when we Skype and she doesn't hear my voice or see me, she keeps repeating my name, "Meemaw" until she hears my voice. When we visit she peeks out the door and then runs  happily into the house doing what she loves to do when she is happy but lacks the words to express herself--screaming!! It is really quite a heartwarming sight and makes me feel so wanted and welcomed!

To read the companion story, "A Grandma's Heart" that was written a week after Karaleen was born and published in Chicken Soup for the Grandmother's Soul last year, please click on the following link:

http://www.christopherreeve.org/site/c.mtKZKgMWKwG/b.8011669/k.8329/A_Grandmas_Heart.htm#



 

 

Happiness is an attitude. We either make ourselves miserable, or happy and strong. The amount of work is the same.
-- Francesca Reigler

 I was thinking recently about all the help I've received through the years. I’ve always hated asking for help with anything. That is, up until my spinal surgeries a little more than twenty-five years ago. After my surgeries, I had no choice; I needed help with just about everything.

Needless to say, it was a very difficult time in many, many ways and for many, many reasons. But I do believe that good things can come from bad situations—a kind of a "that which does not kill you makes you stronger" philosophy.

My situation and experiences were made so much easier because of the love and care I received from both family and friends. Being home again were much more difficult than I imagined but the help I received in so many ways helped smooth the wrinkles out, at least the major ones.

Things were sometimes still difficult but it wasn’t until I figured out that while people could help me physically, I  was the only one who could control how I felt.

But that was just one piece of the puzzle of getting back on track for me.My then-four-year-old son, Jeffrey provided one of the other major pieces for me. How did he do that at such a young age? Mainly, by being himself..

Jeff watched the therapists as they worked with me and when they left, he imitated them and thus became my “therapist”. He also became a “cheerleader” for any and all of my small successes. “You can do it, Mommy, if you believe in yourself!”

One day at camp, after doing exercises, he asked the counselor what exercises he could use to help my hands get better. He came home that day, I remember so clearly, and he’d stretch my fingers out and curl them in and then ask me to do it by myself.

How could I not share in his positive attitude? Jeffrey turned thirty years old in August. All these years later, he still helps me whenever he can. To read more about Jeffrey and how he has helped me, please click on the link below for my story, "Helping Hands".


http://www.christopherreeve.org/site/c.mtKZKgMWKwG/b.7797321/k.846B/Helping_Hands.htm

Facing Life’s Challenges: Lessons from Mary Lou

My two spinal cord surgeries in December of 1985 were huge reminders of how quickly life can change. Of course, there are a number of reminders each and every day. All we need to do is listen to the daily news report on the radio, television or computer. But for me, the surgeries were a huge reminder, one that has not left me since then.

Recent events in my life have reinforced that in my mind forever. We have had horrible news for my family as well as for dear friends of ours. The news of the two separate tragedies occurred within the same week.

Keeping these stark reminders of the fragility of life in mind, I am making a renewed effort to let everyone in my family especially, know how much I love and need them, and how important they are to me. While I have always done this, I’m making sure I do it every day.

My sister, Mary Lou, is undergoing surgery today and it has given me pause. We’ve shared so many things and so many memories—some wonderful and happy, others, not so much. Simply put, we have shared Life. But through it all, we’ve remained very close as sisters and the very best of friends.

Mary Lou has a genuine zest for life. She loves to be surrounded by her loving family and her large circle of devoted friends. She lives her life with a beauty, grace and charm that draws people to her immediately. She can meet people with ease and grace, while I will hang back a bit and study the situation until I’m more comfortable before I forge ahead.

We are almost two years apart but only a year separated us in school; I was born at the beginning of the year; she was born near the end of the next. When we were in elementary school, we would walk to school together. As the older sibling, I felt it was my “job” to get her to come home straight after school. But Mary Lou had other ideas. There was a short, dead-end street between the school and our house. In the spring, when it rained, she had to hop in every puddle from the beginning of the street and all the way back to where I was waiting. In the winter, she had to “skate” on each puddle to and fro. I would urge her to hurry up because I needed to get her home. Once I realized, even at a young age, that I wasn’t going to stop her, we were both a lot happier. After all, Mary Lou was just being Mary Lou! And who would want to change that??

Just the other day, we were in the car together . She grabbed my hand and held it like only she can. Neither of us spoke a word; we didn’t need to because we are sisters by birth and friends by choice.

UPDATE: I am very happy to report that Mary Lou's surgery last Wednesday went exceedingly well. The surgeon said it went just as she expected it to--she removed ALL of the tumor!! For her part,
Mary Lou has remained steadfastly strong and confident. She has faced this challenge just as she has faced everything else--with an upbeat attitude and a never-to-be-defeated optimism.

I was at Mary Lou’s house yesterday. We spent the afternoon going through old photographs that were stored in boxes in my mother’s basement for years. We found a few of the two of us when we were very young. We even found a few more with our brother, Jimmy. He was almost two years older than me. We lost him to leukemia when he was only twelve years old.
The pictures brought a few tears but also a flood of wonderful memories that we shared growing up. Jimmy was the best big brother anyone could ask for and it shows in the pictures. He was always smiling and always very protective of us. I have only very good, very happy memories of the time we had Jimmy with us.

I think facing Life’s challenges makes a family stronger. Families pull together to overcome obstacles. It is like a broken bone that, when healed, is stronger at the point of the injury. And so it is with us.

Mary Lou is upbeat and physically, emotionally and spiritually strong.
If attitude is altitude, Mary Lou is soaring to new heights.

UPDATE: Mary Lou went to see the surgeon and the oncologist on Tuesday. They were very pleased with the way the surgery is healing and with the post-operative MRI. They feel they have removed the entire tumor but want to treat it carefully. Mary Lou will begin her chemo and radiation in the middle of May.
She will also need to do a spinal tap on Monday morning,

UPDATE: Mary Lou had the spinal tap on Monday morning. She met with the oncologist and radiologist yesterday afternoon. We had more good news: her spinal fluid is CLEAR!! She will still have to have the six or seven weeks of radiation but we are very thankful that her spinal fluid is fine.

Through it all, Mary Lou remains positive and upbeat. She has helped me as much, if not more than I have helped her, If I were to list descriptive words (even these don't quite describe her vividly enough), I could begin this way: kind, loving, lovable, friendly, true friend, loyal, funny, spirited, energetic, outgoing, optimistic.

However, if you'd like to get a more in-depth and personal description, please read my companion story about Mary Lou, "Lessons of the Heart Pendant". It was published in Chicken Soup for the Sister's Soul 2".  The link is:
http://www.christopherreeve.org/site/c.mtKZKgMWKwG/b.6738097/k.C9B8/Lessons_of_the_Heart_Pendant.htm


UPDATE 6/27/11: Remember what I said about Life's uncertainty and the unknown that is lurking just around the corner? On May 6, as I was walking with my walker to go upstairs to bed. Instead, I fell ansd my right arm has been in a sling for more than seven weeks now.

Even more devastating than that, my friends who lost their son at the endof February have now lost their daughter-in-law who was pregnant with their grandchild. It doesn't get worse than that.

The only good news is that Mary Lou has just finished her radiation and chemo treatment! She has to go back to see the surgeon and oncologist in mid-July and have another MRI done. but so far her blood tests have been wonderful. The doctor told her she is a "Super star"! And, she really is.  


UPDATE: 7/22/11: GREAT NEWS: MaryLou has had her follow-up MRI and appointment with her surgeion and oncologist in NYC. The doctors told her the report could't be better!! There is no need to add any medications but as a precaution, she remains on the anti-seizure medicine until her next visit which is in October!!

Needless to say, my family and I are extremely happy and relieved! Our prayers have been answered!



UPDATE 1/.17/2012: More GREAT news! MaryLou went for her MRI and follow-up visit with her oncologist. He said she is doing GREAT!
 Mary Lou is still teaching me: the wonderful combination of prayers and the power of positive thinking can take us where we need to be! 

UPDATE 3/5/2012: As hard as it is to believe, it is one year ago yesterday that I found out that my sister was in the hospital, diagnosed with a brain tumor and awaiting what was to be the first of her two brain surgeries before the end of the month of March. I am VERY happy to say that not only did she get a wonderful report in January (see above!), she is driving again!
 Again, I have to reiterate that the power of prayer along with the power of positive thinking can make all the difference in the world. And I am so, so gratefull-and very happy!!

UPDATE 3/30/2012: One year ago this very minute, I was nervously waiting for a call from my brother-in-law. MaryLou was still in surgery for removal of the remainder of the brain tumor. Finally, after what seemed like an eternity, a torturous and painful eternity, the phone rang. Ken, my brother-in-law, gave me the news that I hahd prayed so hard for--MaryLou was in recovery and they had gotten all of the tumor out! Today Mary Lou is planning for a much-deserved vacation for her and her family! I hope they enjoy every minute of their trip to Italy!



















 

                                  Decisions, Decisions…Or, Finding a Silver Lining in a Dark Cloud


It has occurred to me (on more than one occasion) that there are different categories of decisions there are everyday decisions, answering questions such as , “What will I wear?” or “What will I cook for dinner?” Questions like these are made with ease (most of the time!) and often don’t hold much sway in our daily activities. Then there are major decisions that will impact our lives no matter what we decide. These are the types of decisions that we can agonize over, examine from every possible angle before we arrive at a conclusion as to what to do. Questions such as “Which college should I attend?’ can fall into this category. An important decision it is, no doubt, but its aftereffects may or may not impact our lives as much as we think it would.
Of course, there are the major decisions that remain major decisions: “Will I marry this person?” Will I take this job out of state?”

A fourth category is what I call the “surprise” or "stealth" decision. This is the kind of decision that fools you. You begin by thinking, “ Oh, this is an easy enough decision to make” and once it’s made, you don’t give it any more thought, mainly because it’s an easy decision and won’t affect us in any major way. BUT that’s where the surprise comes into play. That easy-to-make plan or commitment turns out to be one of the most important that you’ve made! Surprise!

That kind of decision happened in my family nearly twenty-five years ago! Following two spinal cord surgeries, I was in the hospital for six weeks and then in the rehab hospital for almost six months. My son, Jeff, was not quite five years old. Once I was home, I had both a physical and occupational therapist coming to my house five days each week.

My husband, Walter, thought he would give Jeffrey a day at the track where they could see the colorful jockeys’ silks, see the bugler in his bright red coat musically announce the beginning of each race, and maybe visit the playground for a while, too.

Jeff said goodbye to me the morning of their outing; he was reluctant to leave me alone. I knew it would be good for both Walter and Jeffrey to spend the day together and put hospitals and therapists aside for at least a little while. Walter and I agreed; it would be a fun day for the both of them. It was just what was needed after the long seven months we had just endured.

When Jeff and Walter returned home, they were all smiles. Not only did they have a great day together, Jeffrey discovered a new love: horse racing! He had always been interested in running and racing; he would line up a golf ball, tennis ball, basketball and soccer ball at the top of our driveway and give each a push (a head start!) and proceed to race them toward the bottom of the driveway and into the backyard! Then he would come in to tell me in what order they all finished. He LOVED that. But this was even BETTER! He could stay at the finish line and watch the horses as they finished the race.

Remembering how happy Jeffrey was when he came bounding into the house after a full day of watching horse racing is the one bright spot in an otherwise dark memory bank for me. He brightened my day because Walter had brightened his day! And, this was just the beginning of how this one decision affected not only my memories of that otherwise bleak period but all of our futures, as well.
  
To read more about their day at the racetrack and how that decision proved to be such a surprise, read my story, “Not Just another Day at the Races” by clicking here.

                                                                    Holiday Markers

Halloween has always been a “holiday marker” for me. Once we get to Halloween, I believe we hit the “fast-forward” button and before you know it, Thanksgiving is looming directly ahead.

Halloween is one holiday by which the years can be counted by virtue of the costumes kids wear each year. This year, I found a picture of a very young Jeffrey, masquerading as a circus clown. There was a flood of memories when I saw pictures of my granddaughter dressed as a very cute ladybug! Where did all those years go?

Having just passed Halloween, we are now on a fast-track to Hanukah and
Christmas and the holidays leading to the end of yet another year and the start of a new one. Around this time every year, I get to thinking of times past and wondering how all the years have slipped by. This is the time of year for me to get sentimental. But this year it has hit me harder than usual.

It’s been a year of changes, both good and bad, happy and sad. My son, Jeff, is married now to our wonderful daughter-in-law, Katie. They have a beautiful baby, my granddaughter, Karaleen—such an exciting time in our lives! However, our happiness was clouded because soon after Karaleen’s birth we lost my mom. It will be wonderful to have Karaleen join us at the Thanksgiving table but we will miss my mom very much. The faces around the Thanksgiving table are changing again. All of this prompts me to think back to times past while still looking towards the future.

This December also marks the twenty-fifth anniversary of my spinal surgeries. Again, it is very hard to believe it has been a quarter of a century. How is this possible? I am sure I do not know.

I wrote a story, “Jeffrey’s Roomful of Memories” with a similar theme: thinking back to the days shortly after my return home after five unhappy months at the rehab center following two spinal cord surgeries that were done shortly before Christmas in 1985. By the summer of 1986 my daily routine was pretty much set;: it included daily visits by a physical and occupational therapist. These sessions were closely watched and (and monitored!) by then-five-year-old Jeffrey. After the therapists left, it was then time to practice whatever the therapists worked with me on during their visit that day. Jeffrey made sure that I practiced everything and then he would give me a pep talk: “I think you did great today, Mom! I think you get an ‘A’!”

To read the companion story to this blog, please click on the following link:
http://www.christopherreeve.org/site/c.mtKZKgMWKwG/b.6381099/k.C582/Jeffreys_Roomful_of_Memories.htm

                                                                                         …It’s Back to Work I Go….
                                                                                                 By Donna Lowich

During my stint in rehab, from January through June of 1986, my primary focus was to do my best each and every day in my therapy sessions because that was the way to get out of there and back home to my family. It was my primary motivation and a great incentive for me.

Once I was home, my focus switched: now I started thinking about going back to work and all that would entail. Encouraged by my friends and co-workers during their visits, I began to plan. I was in a difficult situation: I was looking forward to working again but I found out that I needed to be back within a year. That meant my return to work date would have to be November 2, 1986. I was receiving physical and occupational therapy five days a week. I needed to make progress and a lot of it in order to get cleared so that I could go return with a minimum of problems.

My physiatrist (rehab doctor) was wonderful, always encouraging me in each of my visits. In fact, he said I was doing so well that he was going to continue my therapy for five days a week all the way up to, and even past, my return-to-work date.

I needed all the encouragement I could get because despite my progress in therapy, things were very different since I was last at work. I no longer was driving, and I was now in a motorized wheelchair. These were major changes, and although I tried to prepare myself to deal with them, the reality of the situation still stung when confronting them on a daily basis. It was harder than I had ever imagined. But, I enjoyed my job too much to leave. Quitting was just not something I wanted to consider.

I was a corporate reference librarian. I loved looking for the answers. Things were different now, and far more difficult than I anticipated. The fact that everything took me so much longer aggravated me. I had to learn to be patient with myself.

I guess patience worked because I stayed in the library for another fourteen years! In December 2000, I was promoted to a job in a new department. I was happy there. Then my friend, Kathy, called me one evening to tell me about a job opening as an information specialist here at the Reeve Foundation.

It was a whirlwind of events. Before I knew it, I had applied and was interviewed for the position. Now, the only obstacle was finding a way to tell my boss who had gone through a lot of time and trouble to effect a promotion for me.


I was honest with him, and let him know how important this new job was to me. I was happy (and relieved!) to find out that all my fears and trepidations were for naught. When I told my boss he was very supportive and encouraged me to take the job, which I did.

And the rest, as they say, is history…

To read the companion story to this blog, click on the link below:
 http://www.christopherreeve.org/site/c.mtKZKgMWKwG/b.6244779/k.8FAB/The_Big_Picture.htm
 

Clinical Trials and Tribulations


Imagine! Me, in a clinical trial! I was skeptical at first, and that skepticism eventually changed to fear. Not a massive, overpowering fear like the kind that grips you in the midst of an important exam, but a small, gnawing fear that nibbles away at your determination to see the clinical trial, for example, through to its conclusion. The fear stemmed from not knowing what to expect: what was expected of me, and what to expect from this new experience ahead of me.

The whole concept of clinical trials was foreign to me. I knew what they were, in a general sort of way, but never considered participating in one. I have a spinal cord injury due to surgery more than twenty-four years ago. Too many years had passed for me to think about anything like that, or so I thought. Then, when I began working for the Paralysis Resource Center, all of that changed. Or, at least some of it did.

I learned of a clinical trial for a medication that could potentially help reduce spasticity and bring about better mobility for me. My first reaction was: Sign me up!

After reading the possible side effects that included seizures, however, I wasn’t as sure as I had been just a few minutes earlier. After some soul searching, and urging from family and my co-workers, I decided to go to the rehab center where the trial was being held, about an hour and a half away from my home, and find out more information. Maybe I could help with research that could help others, and also help me in some way, as well. That would be a win-win situation.

Entering the large rehab center, I was impressed with the obvious easy rapport the therapists had with their patients. It was April, and many therapists were working with their patients outside near the gardens that lined the sidewalk leading up to the front door. “This is a good sign,” I thought to myself. “It’s a lot different here than when I was in rehab.” It made me feel better to know that the place where the trial was being held had such a positive image surrounding it.

Inside, I met the physiatrist (rehab doctor) in charge of the trial. Dr. Fonzetti met me in the large meeting room across from his office. He spoke with me for a few minutes and asked some questions to see if I met the qualifying criteria set for the trial. Yes, I was between the ages of 18 and 65, my level of injury was within the guidelines, and it was incomplete. I made it so far!

The next test would be whether I would tolerate the medication, if I happened to end up in the group that gets the medication instead of the placebo group. When you sign up, there is never any guarantee that you’ll get the medication. But that’s the chance you have to take. But first, I would have to come back in a week for baseline tests to which later tests would be compared. As I mentioned, the trip to the rehab hospital where the trial was being held was about an hour-and-a-half from my home, which was a bit intimidating, at least at first.

Dr. Fonzetti gave me a schedule of the days as well as a schedule of tests that would be done during the next four months. I could choose the time, and know in advance when which particular sets of tests would be done. Every visit would entitle me to a blood test. Every three weeks was an electrocardiogram (EKG). A complete physical was scheduled for every sixth week. In addition, I was required to complete a questionnaire on any improvements I experienced during the previous two weeks, and I needed to rate my level of satisfaction with the medication/placebo.

I was also assigned to a physical therapist. Jody was my PT for the duration of the trial. Each visit, after checking in with Dr. Fonzetti, I met with Jody, who checked me for the level of spasticity. Jody tested my arms and legs by bending and straightening them, watching for ease of movement as well as range of motion. She assigned a numerical rating. In addition, Jody asked me to rate my spasticity from each previous visit, rating it from “Mild” to “Severe”. This information was written down, sealed in an envelope and sent to the company collecting the data for the trial.

Another of my responsibilities was a dial-in report. I was given a phone number and a nine-digit identifying number, and had to phone in on a daily basis, to report any missed doses, and any functional improvements based on prerecorded questions that I answered with numerical responses.

As time passed, I became more familiar with the trial, the tests, and my responsibilities. Despite the blood tests, I began to look forward to my trips to Burke, even when they jabbed both arms, looking for a good vein!

That is because, after just a few weeks, I noticed some improvement in my spasticity. Dr. Fonzetti couldn’t tell me for sure that I was on the medication, but I was sure that I was. It was either that, or I was experiencing a really powerful placebo effect!

The improvements continued. I remained on the medication for almost ten months. By the time of my last visit, I had a list of improvements: increased sensation in my right leg for hot and cold, reduced tingling in both hands, increased fine motor movement with my fingers, and goose bumps when I got chilled. I was even able to stand better due to my reduced level of spasticity!

During my last visit, Dr. Fonzetti assured me that since I had completed the trial, that I could stay on the medication (or begin the medication, if I was on the placebo), until the drug is approved by the FDA. I was all set!

Unfortunately, the plans that I thought were firmly in place, changed rather quickly. Within a week of that last visit, the company sponsoring the clinical issued a statement that the results of the trial were disappointing for the spinal cord injury portion of the study, but very promising for the multiple sclerosis study.

As a result, the MS study was going forward. The spinal cord study data was not going to be used for FDA approval of the drug! The company was not going to be able to continue to provide medications to participants such as myself due to financial considerations! My hopes were dashed!

But there was nothing left for me to do but gradually wean off the drug, which took a couple of weeks. I eventually got over my deep disappointment, but I don’t mind telling you that it took a long time, longer than I would like to admit.

I kept in touch with my contact at the company that was sponsoring the clinical trial. Periodically, I’d call just to check on the progress of the continuing trial for multiple sclerosis. I was very pleased to hear that the Phase 3 trial was going well with great results! But even so, I knew it would take a long, long time before the trial was completed, the data recorded and sent to the FDA to be reviewed and hopefully, be approved for the prescription drug market.

Fast forward to Monday, February 1, 2010. I saw a press release announcing the approval of Ampyra, the market name for fampridine, the clinical trial drug that I was on all those years ago. The drug is approved for patients with multiple sclerosis to improve their walking speed. I called my friend at Acorda and she told me my doctor can prescribe it for me because it is “open label”. The only barrier is that the monthly cost is more than $1000. I have to wait and see if my insurance will help with the cost. The patient assistance program is for MS patients, at least at this point.

I’m waiting for a call back from my doctor. She can call and get more information on insurance assistance for me. I’ll let you know what happens…

9/2/10
Looks like I've hit another snag, though! My doctor's office hasn't gotten back to me yet on whether they've actually faxed the information Aetna needs to complete the application.ARGH! Nothing's ever easy, is it?? 

9/27/10

All of a sudden, everything is changing--and NOT for the better! Apparently, the one  form needed for Aetna was received. now I have received a letter denying Aetna's coverage of the drug for me. Because I have a spinal cord injury and not MS, I have been denied access to a medication that I KNOW will help me.

 My doctor's office has appealed twice and twice denied. Now I a in full-throttle panic. I'm calling everyone I think wouldbe even mildly interested in hearing me talk/vent//cajole about it.but most times I am leaving messages that are not being returned. I gues it's more bad news. I'm going to let it go for a few days. Not mentally because I'm thinking about it all the time. I just have to plan what to do next.

10/26/10
After  making some calls on Friday, I got a call back from someone at Acorda. She gave me some ideas on how  to pursue different ways to possibly get Ampyra. No guarantees, of course but at least it's something to keep in mind.

I made some more calls today and am playing the waiting game again.

11/1/10

I received a voicemail from my doctor. She tried to call for a phone appeal to the insurance company. They never called back. She asked for the contact information again. She said she wants to try this way because it would mean a lot less paperwork than trying one of my other remaining options.

I called her back and left a voice mesage with the information and asking her to let me know what happens.

And the wait goes on....

11/8/10

No word from my doctor yet. I called and left another message. I have a feeling that this means the phone appeal ddin't work. Looks like a may have to go to Plan B. As soon as I develop one, that is.

11/16/10

Still no word on what happened with the insurance appeal. The only glimmer of hope that I have3 (and it is a small glimmer, I admit), but I haven't received a letter saying "NO!" rfrom the insurance company. I'm afraid to call because of what I'll hear. I still like to cling on to that itty-bitty glimmer for as long as I can.

I know I have to implement Plan B at some point but I'm afraid to stir the already-murky waters that I'm trying to traverse.

I've said it before and I'll say it again: ARGH!

This really shouldn't be this hard!!

12/1/10
I left yet another message for my doctor, asking if she would be willing to do the paperwork necessary to get the medicine.
This is my Plan B but so far no response. I think I know what THAT means...

12/9/10

In order to implement Plan B, I have to abandon Plan A. SO--no more calls to my doctor. I am tired of banging my head against the wall. It took me a while but I have learned my lesson. Continuing to make calls is useless and fruitless.

 I will continue talkiing about Plan B in a new blog.,..watch for it!!