Friday, October 28, 2011

Angels in our midst...

It's easy to see blessings when you set your mind to the positive, and so I've been taking time to identify and acknowledge these in a daily gratitude journal. Sometimes the entries are simple things like an unexpected note, a phone call or visit from a friend or family member, and sometimes they are entries about the people I would have never met if not for my illness.

Strangers who demonstrated: kindness, compassion, hope and encouragement, just when I needed it most. Although, I may only name a few here, know that there have been many in the past year and as each day passes more of them appear along the way.

Dearest Pauline, you are filled with light and healing energy and through you I have gained peace, and the capacity to be gentle with myself. Thank you for your guidance and healing.

Holly, thank you for permission to allow myself to grieve and fall to pieces, when everyone around me always expects me to be strong, including the worst offender, me... Thank you for the encouragement to journal and embrace the journey.

Robert, I feel so fortunate that you did not see my disease as an obstacle to healing my shoulder. The pain began in January and by September when you came to help me, it was frozen and immobile. I thought I would never regain the strength or range of motion to use my arm again.You gave me hope, encouragement and the will to fight through the pain.

It's sad to say but when you have ALS, most of the medical professionals you encounter are focused on educating you on the progression of the disease, and helping you prepare for what's to come as you digress. It's rare to find someone who encourages you to fight! Thank you Robert for your positive spirit and faith in me.

Laurie, from the day we met, I felt as if I'd known you for years. Thank you for your visits, and listening as I babble endlessly... Your practical insights help me stay on track.

And....Joe, the neighbor just down the street, who may have never come by to meet us if he did not recognize that we shared the same challenging disease. Thank you for checking on me this week and bringing me hope in the form of new research information you gathered at a recent ALS seminar I could not attend.

To all of the Angels in our midst, it's likely that our paths would not have crossed if not for my situation, but my life has been impacted by your presence, my faith made stronger, and my heart has been touched, and for that I am truly grateful...

Thursday, October 27, 2011

The Domino Effect...

There is no cure for ALS yet, but there are medications your doctor can prescribe for the symptoms, for me it's been anti-inflammatory drugs to reduce pain, and muscle relaxers to try to relieve some of the spasticity.  Most of these medications come with their own set of adverse side effects. No worries though, they can also prescribe medication for the side effects...And so begins the domino affect, but where does it end?

Before you know it your head is spinning and it takes an hour once a week just to fill those tiny compartments in your day of the week pill organizer!  Oh yes, you'll need one of those; try to avoid the ones that look like a mid-size tackle box. They have the am, mid-day, evening, and bedtime compartments for each day; helpful to those who need to take different medications multiple times a day. 

However, I would suggest you exercise caution. If you would consider yourself to be someone akin to Felix Unger, it's tempting to get the tackle box and be that organized, but wait until you need to get those tiny pills out of the mid-day Wednesday slot!  Not so easy with the loss of fine motor skills in your fingers.

I recommend the single compartment, day of the week organizer with the locking lids. Get more than one if you need an am, pm etc. You can just open the lid for Wednesday, and pour those little buggers into your hand or a dixie cup. 

If you're more of an Oscar Madison type, with any luck you're married to a Felix type and it's already been taken care of for you... and it's color coded, not that you care... but try to make it seem like you do.

All that really need to decide for yourself how you want to handle all the prescriptions they hand you before it gets out of control. It's sort of like doing a cost benefit analysis, only you have to weigh the benefit against the discomfort, and you have choices.

In my experience, some muscle relaxers can cause some of the necessary muscles to lose control, not so good if it affects the plumbing. Now, they can fix that with another medication, but this one could cause a backup on the other end, so you'll want to give it some serious consideration.

Or you can take the one that causes acid reflux but Pepcid Complete should take care of that, and if not, we can get you a prescription for Nexium, the little purple pill, you've likely seen the commercial for that one.

There is another option, but it can cause your legs to feel rubbery and unstable, so start with a smaller dosage and increase gradually. So you give it a try and okay, things are going well, no rubber legs but... well, if you admit that you're feeling a little sad and you find yourself crying over the silly things like, feeling pressured to decide what to have for dinner, that statement will earn you a prescription for an antidepressant faster than you can say Zoloft! 

No thanks, my pill organizer is full.
There's no room for Zoloft.
You've got to draw the line somewhere...

Monday, October 24, 2011

Holding out Hope...

It was late December 2010, Christmas was only five days away, and we found ourselves sitting in a tiny room at the Mayo Clinic in Rochester, Minnesota under 38 inches of reported snowfall, getting a second opinion...holding out hope that the young neurologist we saw at home, was wrong about the diagnosis.

I prayed over and over on the long drive out, that God would intervene and we would get better news. Upon arrival at the exit for Rochester, I saw a rainbow in the sky and wanted to believe it was a sign of hope.

After all, the doctor couldn't be more than twelve; he must have missed something...   I was served a death sentence, and I wasn't going to accept it from someone who had the ringtone on his iPhone configured to quack like a duck. Funny, yes... and being the geek that I am, I could appreciate the humor, but also being a child of the sixties,   I needed someone like Marcus Welby M.D. to check things out.

This was the face of a man I could trust!

The Mayo Clinic is an amazing place, within minutes of our initial meeting we had a four day schedule of appointments with specialist and tests to be performed. This included: the collecting all of the compulsory body fluids for testing, a pulmonary test, another spinal tap and another EMG! 

Bravo to the delightful woman who performed the spinal tap without consequence. She stood less than five feet tall and likely weighed in at less than 100 lbs. She spent a few minutes introducing herself, and explaining what she was going to do as I would lay on my side, facing the wall. No need to remove my clothing or even my shoes, she simply said it works best when we just chat during the procedure. So we talked about our kids, as moms often do, and in a small exam room, without a fancy gravity table, x-ray machine or team of medical professionals, she got the job done! Never under estimate the gentle finesse of a woman.

The EMG however, was equally as painful as the first one, but necessary I suppose, and the pulmonary tests were interesting. I had a cast from a broken wrist that reached up my arm nearly to my shoulder making it difficult to use the arm for anything, so they had to call in a lip holder to assist in the testing. This was a tad awkward for both the designated lip holder and me; it's best you don't try to visualize it.

Organized, efficient and thorough, the Mayo team reached a conclusion in three days that had taken our doctors at home the better part of the last nine months to determine. Unfortunately, our Doogie Howser was right, and after we met with the specialist who delivered the confirmation, we sat with a nurse who was charged with the task of educating us on what to be prepared for as the disease progressed, clearly not the fun part of her day.

I remember taking some notes with my pad and pen, hardly legible as my tears were hitting the page, making the ink run. I'm sure I still have those notes, and the folder filled with resource information that would lay untouched for months after we returned home. It was only a couple of weeks since the first diagnosis and the confirmation stung, throwing us both back into a state of shock.

We had the answers we had come for but it was a long, quiet drive home...

Sunday, October 23, 2011

Back to the Drawing Board...

Okay, so it's not Lyme's disease, but I learned a new skill, I could inject antibiotics into a central line... and who knows when that may come in handy?

We met with the neurologist again, and he explained that he had some ideas about what was going on, but he would need to perform one more test to confirm his suspicions. He could perform the test himself, in his office.

So on December 9, 2010 we returned to his office for an EMG, short for Electromyogram. After careful consideration, I can report without hesitation, that an EMG is even more painful than a Spinal Tap, save the week long aftermath. This uncomfortable procedure involves placing electrodes in several strategic locations on your body: arms, legs, feet, and spine, while the doctor performs tests to evaluate the health of your nerves and muscles.

He begins with something called a Nerve Conduction Study, in which he measures nerve function by stimulating them with small electric shocks, not too bad, similar to the Evoked Potentials testing, only more extensive, but it doesn't end there...

In part two, he inserts a needle equipped with a microscopic electrode into your muscles, and as if that's not painful enough, he moves it around while you flex the muscle being tested. Did I say "OUCH"? When he stuck the needle in my back, my body jumped so high it left the table! For Pete's Sake...what did I do to deserve this kind of torture? Okay, I did accidentally kill my brother's gerbil when I was eleven, but he bit me; and it was not intentional; it was self defense!

When it was over and the doctor left the room, I could see by the look on my husband's face that it was just as painful to watch, as it was to actually be the pin cushion. I dressed and we waited for the doctor to return with his diagnosis.

It was surreal, like a scene from one of those medical TV shows you've watched. I could see his lips moving but the words hung in the air as if I could just refuse to accept them into my reality. ALS meant nothing to me...Lou Gehrig's disease? He was a baseball player, he died, but that was a long time ago... Two to five years... Seriously? I looked over at my husband and saw his eyes filled with tears but I held out, surely this can't be right...

Friday, October 21, 2011


We were referred to Germbusters, a catchy name for the practice, and the doctor was known to be a Lyme's Disease Specialist, born, raised and educated on the east coast where the disease was first discovered.

He was a pleasant fellow, happy to meet another transplant, and we bonded as we shared commonalities reaching as far back as our grandparents coming from nearby towns in Italy. He took my history including where I was born, lived, and traveled over my 40 plus years. While the tests were not 100% conclusive, he was fairly certain that my east coast upbringing, and ongoing trips back to the homeland, qualified me for the likelihood that one of those nasty little ticks had at some point gotten to me.

Fortunately, Lyme's Disease was treatable if caught early, but there was no telling how long ago the alleged  interlude might have occurred, and left untreated the bacteria had the potential to cause all kinds of neurological problems.

He was confident in his ability to kill the little spirochetes, and described his aggressive treatment plan that included inserting a central line through a vein in your arm straight into your heart, to pump the antibiotic into your bloodstream daily for six weeks. There was no time to waste, and while he did not promise that I would return to normal after the treatment, he could prevent further damage by annihilating them.

So, okay...I have Lyme's Disease, that's not too bad, and back to the hospital we go to have a central line installed. Interesting procedure, not for the squeamish, but it was over quickly, and it wasn't too painful. Next, were off to the clinic to learn how to administer the drug myself once a day. The nurse in the infusion clinic patiently showed me the six steps to be followed precisely to ensure I would not develop an infection. I would return to see her weekly and she would give me the week's allotment of medication, check the port and take blood for testing.

This wasn't too bad, I had to repeat the process the same time each day, so I did it at lunch time. This did occasionally throw people who walked into my office during the 30 minute event, if they weren't aware of my new ritual. But they got used to it as quickly as they did when for a span of time, I sat on a large lime green balance ball instead of my office chair. Just for fun I'd bounce up and down while working at my desk, and catch the confused look on the face of a passerby that did a double take to see what in the world I was up to...sometimes you have to make your own fun at work!

When we had completed four weeks of treatment, I saw the doctor to evaluate the progress. "How are you feeling?" he asked. "Good, maybe a little tired but nothing dramatic while taking the drug so far." I replied. He looked down, with a sort of melancholy look on his face that puzzled me. The insurance company only pays for four of his aggressive six week plan, so given the considerable out of pocket expense I asked if he thought I would benefit from the additional two weeks of treatment.

Apparently, not feeling worse indicated that nothing was happening, and if the drug was actually killing those little spirochetes, I would have been feeling awful as they fought back. He concluded that he did not think I would benefit from the additional medication, and there was nothing more he could do for me. He actually looked defeated as he referred me back to the neurologist.

So, back to the hospital to remove the central line...
I guess it wasn't Lyme's Disease after all...

Thursday, October 20, 2011

Spinal Taps Are Not Fun...

I realize I've been jumping around and my post Still Searching for Answers, left off in late August, early September 2010, so let me take the time to catch you up.  We saw the neurologist at the end of August, after the initial tests came back from the orthopedic.  He performed a neurological exam that vaguely resembles a sobriety test, only you're not worried because: he's not a cop, he didn't pull you over, and you haven't had any adult beverages before the appointment. He didn't say much during the exam, he uttered physical commands, I complied. He asked some questions, I answered and he concluded that it was all very perplexing.  He needed more information so he ordered additional blood tests, another MRI, a test called Evoked Potentials, and finally a SPINAL TAP.

What I learned over the nine months of poking and prodding, was that all of these tests were performed in succession to rule out one horrifying disease after another.  So while we were happy when these tests came back negative, it was like blissful ignorance, as they upped the ante with even more horrifying options, as you played Spin the Wheel of Fate, to see which dibilitating disease we will land on.

The MRI was no big deal, been there, done that, nap time in the noisy cocoon. I passed both types of evoked potentials with flying colors, a few electric shocks but relatively tame. Then came the dreaded spinal tap; this one scared me and my instincts did not fail me.

It suffices to say that the spinal tap was unsuccessful even after multiple attempts. While I lay face down on a cold metal table that could be tilted to the point of standing me upright, a team of four used an x-ray machine, a needle, and gravity to coax spinal fluid to leave my body. That was followed up with spinal fluid leaking from the two pin holes they created in my lower back within 48 hours of returning home. This leaking causes the pressure in your brain to drop, leaving you with the mother of all headaches, and the inability to hold down so much as a drop of water. 

The spinal tap was on Friday and by Tuesday we were heading back to the hospital, to the emergency room this time, to get a blood patch, a procedure that uses blood they take from your arm to seal the two leaking lumbar punctures in your lower back that would not produce the spinal fluid in the first place. This procedure also required a room full of medical professionals. Oh, and since you're already here, the doctor would like us to take some more blood for additional tests.

We later learned that those additional blood tests indicated that I had been exposed to a Lyme antibody; apparently it was also present in a previous series of tests but it seemed unusual, so the test was done a second time. Armed with another positive test result for Lyme antibodies the neurologist referred us to an infectious disease specialist and so the next leg of the journey begins...

Wednesday, October 19, 2011

My Boy Blue...

It’s likely that some of you will conjure up a scene from the movie Old School with Will Farrell crying out “You’re my boy, Blue!” when stumbling upon the title of this post.  We hear this all the time when people learn our dog’s name, Blue.  Personally, not being a huge Will Farrell fan, I must admit I had to Google the phrase, before I knew what people were talking about. While I can watch Elf repeatedly at Christmas time, I considered agreeing to see Talladega Nights, penance for the occasional chick flick!

When my husband and I married and combined households, I have to confess I was not 100% sold on the idea of having a dog come live with us. No offense to dogs in general, or to Blue specifically, you see, I grew up with dogs as pets and loved having them. However, I’ve spent most of my adult life sharing my home with felines. Not because I liked them any better, they just fit into my lifestyle better being career oriented and often maintaining a fairly aggressive schedule. Dogs need to be walked and cats came potty trained; it was a no brainer for me.

Although, not as rewarding; I had been a cat owner for the last twenty-three years. I say cat owner because I don’t wish to be labeled a “Cat Person”; I am an animal lover.  Let’s be clear about this because the stereotypical Cat Person is weird and everyone knows that…Please don’t send me any nasty-grams on this subject.

Where was I… ok, so here we are getting married, we each have one child, good that works out, we each have a treadmill… that might be tight but we can work it out and oh…? I have two cats and you have a dog. I might not have been 100% on board but I’m no idiot, and I am not going to be the evil stepmother who would not take the dog in… so we may need to pay for cat therapy sessions but let’s give it a try.

So, Blue joined us and the cats hid for about three months… and when Blue was in his crate, they came out, ate, used the litter box and sauntered by the crate just to let Blue know they were still in charge!

Have you ever noticed that dogs come willingly when called, tails wagging, ready to slobber all over you, and cats sit there looking at you as if to say “So, if I come, what’s in it for me?”  Well, my cats aren’t really like that; their downright needy and I’m pretty certain Nik, thinks he’s a dog. So, after a few months we all learned to live peacefully together. That’s not to say there isn’t an occasional chase…but in general they co-exist in harmony. 

The funniest part about it is the jealousy; it’s gotten to the point that when I call the cat, the dog rushes over and it’s not uncommon to have all three of them on you at once.

So… this post is for my boy Blue, who has wormed his way into my heart by following me from room to room, watching to see that I’m ok, and taking every opportunity to slobber all over my face whenever he gets the chance. You are my loving companion, and I wouldn’t want to be on this journey without you…

Tuesday, October 18, 2011

Parallel Lives...

There is a belief in China that when a child is born, an "invisible red thread" connects the child's soul to all the people: past, present and future, who will play a part in that child's life. If you subscribe to this belief, it was simply destiny that my Chinese born daughter is beside me on this journey.

Initially, upon learning of my diagnosis, I was devastated by the thought that she would have to witness my eventual decline and lose her mom much sooner than seemed fair. The question of why...why would God have joined us only to bring such pain and grief to a child? I have no answer to that question, only deep sorrow surrounding the reality of it.

Although she and I do not share any biological connection, there are so many ways in which I see myself in her. I guess it has always been a question of nature vs. nurture, but there is a connection between us that I've always felt but never expected would play out in this way.

I remember the day vividly in my mind’s eye; it was my eighth birthday, I was sitting on a bench in front of the five story apartment building we lived in waiting for my parents. In my hands a brand new red transistor radio, a gift I received that very day. While my attention was clearly on my new toy, I do recall my thoughts as I noticed my parents walking out of the building. It's likely that this was not something new I'd seen, but for the first time my usually self centered focus, turned toward them, and processed what was happening. Why did my mom need to hold onto my dad's arm so tightly? Why couldn't she walk on her own? Was someone going to explain this to me?

She was diagnosed right after I was born; it was neurological and by the time my eight year old brain noticed, it looked a lot like what I am currently emulating today. It was not ALS but there were a lot of symptomatic similarities that played out in a gradual progression of decline that a child could miss. Sadly, we lost her when I was just 16 years old. My daughter recently began to ask how old my mom was when she died, and I dance around the subject, because I cannot bring myself to tell her, that she was the very same age I am today.

So, here I sit with both the perspective of a mom frustrated by the reality of her physical limitations, and the memory of what it was like to be eight, and realize my mom was different, but not in a good way...

I've been told that my story is uniquely my own; it is not my mom's story or my daughter's story, and that my experience as a child provides an awareness my mom didn't have. I pray that awareness evokes wisdom, patience, and understanding as we travel this path together; I would not have chosen this for her... 

Friday, October 14, 2011

Wow! Mom, his name is in the food...

There are so many ways in which our family has been cared for these past ten months, I could easily write for days as I acknowledge those who have found thoughtful ways to show us their support, this post is for one of those dear friends, Sloppy Joe!

Now, don't get the wrong impression, Joe is not a sloppy guy; in fact he is one of the most meticulous people I know. One day, I was rummaging through a box of files from a project launch that was accomplished nearly ten years ago, searching for some detailed information, and I found the lunch order for the team who was working on the project, complete with names, sandwich orders, and important condiment preferences like: with or without mayo noted. Joe has always been very thorough.

Joe also knows that juggling school aged kids, getting homework done, running a household, and holding a full time job leaves parents feeling like they ran a marathon most days. Add to that equation a parent with physical limitations, or an illness and you've got even greater challenges.

I learned a lot from Joe over the years both personally and professionally. I used to chuckle when he could tell me precisely how long it took for one of his boys to brush his teeth, and how many minutes he had to quiz them in the car on the way to school, to be sure they were prepared for the weekly spelling tests. He had the routine down to a science, and before long I found myself using these strategies to run my own daily marathon.

Although Joe had so much on his plate already, he often took the time to prepare an extra batch of whatever meal he was preparing for his own family and bring it in for me to take home to my family. Complete with salad, sides, bread, dessert, and heating instructions carefully taped to the main dish, Joe delivered several delicious, kid friendly meals!

My family raved about all of the dinners, and especially loved his Ghirardelli brownies with the chocolate chunks, but my favorite response came from our youngest the first time he made us Sloppy Joes. Wow! Mom, his name is in the food! She was clearly impressed!

Joe, this one's for you! Thank you for the many delicious meals; you will always come to mind whenever we have Sloppy Joe's...

Thursday, October 13, 2011

Still Searching for Answers...

The summer was moving fast and we were still searching for something that could explain my dragging right leg, loss of balance, and the random twitching of fingers on my right hand, which by the way only seemed to happen in the still of the night.  I also noticed about the same, that my fingers were weakening, and it became difficult to write in the same block printing style I'd come to recognize as my own handwriting. 

At first, I considered the change to be a symptom of a cultural shift from using pen and paper, to typing e-mails and texting on my Blackberry. How often did I actually write anymore? I remember asking my coworkers if they were noticing the same thing, but no one seemed to be jumping on my cultural shift theory.

The Orthopedic ordered a series of blood tests, x-rays, and MRI's in July, and referred me to a Neurologist. I'd had my fair share of blood tests and x-rays but the MRI would be a new experience. I learned this procedure was fairly uneventful; although you must lay completely still, with ear plugs, if your lucky enough to be offered them, and you pray that you don't get the sudden urge to scratch your nose, which inevitably will drive you nuts for the next 45 minutes! 

The Doctor actually ordered several of these MRI's to be performed, and I learned that sometimes the procedure was done on the same area of the body twice, once in the standard fashion, and then a second time using a dye that was set up intravenously. I was not crazy about this added amenity, the complimentary ear plugs were enough, but this particular sequence of imaging was going to be of my brain, and the technician did not resemble Nurse Ratched, so I complied. Frankly, you could easily gain consensus that it was about time I had my head examined anyway.

So now we've got the dye set up, and we're ready for brain imaging in technicolor, and over and over the technician warns me that if I move, we'll have to start the whole process all over again, so at this point the best I could hope for was that I could manage to relax, and maybe fall asleep. After all, who wouldn't want to enjoy a midday siesta? Thankfully, I slept through most of these tests and emerged from the cocoon like contraption virtually unscathed and well rested.

Spinal taps were an entirely different experience...

Wednesday, October 12, 2011

Choosing to See...

Last year I read the book Choosing To See, written by Mary Beth Chapman, the wife of a well known Christian Artist, Steven Curtis Chapman. In it she writes about her journey through the grieving process after the accidental death of their 5 year old daughter, Maria Sue.

Something about the title and description drew me in. The loss of a child remains to be the most traumatic experience I could ever imagine having to endure. I lost a younger sibling at the age of 23 and to this day I cannot think of any other event that had a greater impact on me and my family. Even now, when I am forced to face the reality of my own mortality, it doesn't come close to the overwhelming grief I experienced at that time.

I had previously purchased a copy of Beauty Will Rise, the CD that Steven Curtis Chapman released after the loss of Maria Sue. This collection of songs was by far the best of his work I had yet to hear. I remember thinking how the lyrics were filled with the pain I had experienced as I moved in and out of the emotional stages of grief, and yet they managed to come through the experience transformed by faith and hope. I purchased several copies that year to give as gifts thinking no matter the reason for grieving, in the end, the process was the same and these words could heal people.

I am still impressed by this couple and their courage to share their journey with us, no matter how personal and painful the experience has been, and although at the time I had no idea of the journey that was unfolding before me, through them I have been inspired to see God's hand in my own journey.

Choosing to see for me, means not to become angry with God for allowing this disease to take my life as I knew it, but instead finding the many ways in which we are blessed by these changes, and blessed by those who have joined us on this journey.

I have always joked that my glass is not half empty or even half full. My glass is overflowing and that has remained unchanged even through this challenge.
My faith simply will not allow it!

Tuesday, October 11, 2011

May God Bless Joe...

Just yesterday afternoon, we were out in front of the house watching our eight year old daughter master riding her bike without training wheels for the very first time... and out of nowhere appeared Joe. Admittedly, we were distracted as we wanted to capture the moment, but Joe was unaware of the accomplishment, and so he strolled over as if it were just another day.

Oddly, we had never met Joe before but he was interested in chatting so we politely indulged him, while keeping an eye on our priority. "That's a nice scooter you have there...they run between $2000 and $3000." he said. "Oh, I really don't know about that; this was a gift." I replied. "Well, it's a nice one, and I may need one myself; I'll find out soon!" Joe responded. His comment just begged to be acknowledged so I took the bait. "May I ask why?" "Well," he said, "I have a degenerative neuromuscular disease..." and the conversation stole my attention.

Could it really be true? The man standing before me, a man I'd never met, who lives right down the street is also afflicted with ALS? Well yes, apparently so... only Joe can walk, and his speech is just fine and he denied any issues with breathing and swallowing. He described his unique presentation of the disease as Flailing Arms, which after further investigation via the internet, I learned was called Brachial Amyotrophic Diplegia, a form of ALS that may or may not, turn into full blown ALS.

Joe explained that he's had it for six years and that it has only affected his hands and arms. When he extended his arms toward me, I could see the misshapen hands he held out, looked hollowed in the same places as mine, his fingers curled as the tendons tightened, and the muscles in his arms were mostly gone. It was all too familiar; he indeed had some form of ALS.

He shared that he was participating in a study with Dr. Siddique, a neuroscientist with Northwestern's Feinberg School of Medicine, who recently announced his discovery of the cause of ALS. We were well aware of Dr Siddique and the discovery; it has given us hope and now we learned that Joe down the street was donating spinal fluid, blood and tissue samples to help find a cure. There are roughly 35,000 registered cases of ALS in the US on any given day, and it is believed that there may be as many as 300,000 case internationally.

So...May God Bless Joe, who can still walk, and talk, and breathe; I pray he won't ever need a scooter...

Thursday, October 6, 2011


This is for my neighbor... He and his wife and two small children live at the top of the block. Just this fall his daughter entered Kindergarten and so now we have another child taking the school bus, who lives on our side of the busy street we need to cross to get to the bus stop. Stay with will begin to make sense as to why this matters.

Anyway, I can use my scooter to accompany my daughter up to the end of the block to watch her cross the street and get on the bus; but admittedly, there are days I don't feel up to the task. While those days are few and far between; I beat myself up over the idea of letting her go alone. I was raised with a healthy dose of good old Italian Catholic guilt so its easy for me to fall into this trap. Over and over, I repeat the rules on how to safely cross the street in case one day I cannot muster the strength to go with her, but it's difficult for me to be okay with this kind of independence.

A few days into the school year I noticed my neighbor and his daughter began to use the school bus service, and so while we waited for the bus, they joined us on the corner. We made fast friends of them, because my daughter cannot imagine anyone who wouldn't be delighted to talk with her, and she started right in asking them questions so she could get to know them. Although his daughter was shy and mostly hid behind him, Dad was tolerant of her inquiries and friendly.

After a few days, when they reached the corner he turned to my daughter and said, "Shall we cross?" and she hugged me goodbye and crossed safely with them. When the bus left and he returned to our side of the street, I thanked him, offered up the customary "Have a good day!" and we parted ways to head back to our homes.

Since that day, I've come to notice that they wait to cross the street until we arrive, and I take comfort in knowing she won't be crossing alone if one day I don't feel up to the task. I'm embarrassed to say that I don't know your name, but thank you neighbor for stepping up and making a Mom feel a little less worried.

In case you're out there and you read this...Do you like brownies? I'd like to bake you some...


Re-posted from 10/6/2011 due to accidental fat finger!

It's fairly easy to accumulate a growing list of frustrations as your previously obedient muscles no longer respond to visceral commands. Simple tasks you've always taken for granted like opening a plastic jar of peanut butter, removing the small square plastic thingy from the bag that contains your loaf of bread, and turning the knob on the fancy toaster you purchased at Williams and Sonoma, become an exercise in stamina and patience. You begin to question how badly you want that peanut butter and jelly sandwich, and consider that using your teeth to tear the wrapper off a protein bar, although barbaric, might be the easier way to go.
Additionally, you decide that it wouldn't be such a bad thing if the cleaning lady suddenly developed a mild case of OCD and straightened the artwork hanging on the walls after she dusted them. It's nice to know she’s thorough, but does every piece need to be knocked off center just so I can obsess about it every Friday afternoon? I know, let it go... I'm pretty sure that someone else in this house will find it equally as irritating and set them level again anyway.

Then there's a whole list of frustrations related to dressing and undressing that make you want to live out the rest of your days in sweat pants and garments with Velcro closures. If your home alone, the sports bra you can pull over your head is going to win hands down over that fancy lace bra with underwire... and since your legs don't seem to move with the same sense of urgency your bladder has assigned to the task of getting to the nearest bathroom, why button that top button on your jeans and create another obstacle to completing that performance when the time comes?

Grooming tasks in general present a challenge: tweezing, shaving, clipping your nails, even using a hair dryer, brush, or comb can be frustrating. A good hair cut, a dab of gel and I'm letting Mother Nature take responsibility for the end result. Forget about trying to put on mascara or eyeliner unless its Halloween and it will be considered part of your costume, otherwise you're apt to frighten the children at the school bus stop with the mess you make of your face. A steady hand is required for that task and that's a thing of the past.

I realize it sounds like I've lowered the bar, and perhaps that's a little bit true, but some days you just have to pick your battles and save your energy for more important things like playing with your kids.

Wednesday, October 5, 2011

For Ladies Only...

FAIR WARNING: This one is for Ladies only!

Gentlemen, proceed with caution or you're likely to have the urge to put your fingers in your ears and run singing la, la, la, la, la... as I've seen so many of you do when the girl talk starts at the office; don't let this happen to you.

Many of my friends are in their late 40's, early 50's so we've had our share of laughs surrounding our impending encounter with menopause; the anticipation and anxiety of the most certain freak show we will embody, as our hormone levels rise and fall.

Did you know that there's actually a website that lists 34 potential symptoms of menopause? It's absolutely frightening! I won't trouble you with the entire list; I'm sure if you're reading this, you can Google it too.

I was familiar with many of the common ones like: hot flashes, night sweats, irregular periods and mood swings, and I think we can all attest to the fact that by this time in our lives we've already experienced: memory lapses, anxiety, irritability and breast pain, but who's prepared for: burning tongue, electric shocks, incontinence, and... my all time favorite on the list, 18. Change in Odor! I'm gonna' dance on a twig and assume that's not a pleasant odor.

Seriously, I'd like to take a pass on menopause, I have enough on my plate...
Are you with me?

Tuesday, October 4, 2011

Stealing pieces...

Sometime earlier this year, I received an e-mail about an exhibit called Stealing Pieces, on display at Daley Plaza in Chicago. I was curious and so naturally I clicked on the link to see what it was about. There was a brief video that depicted what I can only vaguely recall as floating limbs. The idea was that little by little ALS steals pieces of our loved ones. Remarkable! Someone had accurately described what I had been experiencing for nearly a year.

The previous June I could still run, although my right foot seemed drop in an odd sort of way, but if I concentrated I could give it that extra lift so I didn't lose my footing. I also had a difficult time climbing the Dunns River Falls in Jamaica that summer, something I had done before with excitement, now frightened me.

In July I decided that my sense of balance would make riding my bike scary, especially since I had changed out my pedals years ago to allow my shoes to lock into them. It required a certain amount of skillful control when stopping that I wasn't sure I could muster.

In August the Atlantic Ocean swept me off my feet with each gentle wave; I literally could not stand in the moving water. I grew up riding the waves on these beaches, and on this particular summer day they were tame and forgiving, and yet I could not hold myself up.

Still, I remember laughing it off...I'm not sure who I was trying to convince that it was nothing to worry, my friends, my family? Anyway, we had an appointment scheduled in late August to see a neurologist; we'll figure this out when we get home and fix it...right?

Where did you put the...

While I feel certain that I have adapted to my physical limitations, developing carefully sequenced routines, each new day presents it's own set of challenges. Now, before we go any further, I must confess that I have a self diagnosed case of OCD; those of you who know me well can stop laughing... Translated that means: I have a fairly regimented approach to daily living so "Don't move anything from it's proper place and I won't freak out." It's a pretty simple concept and one that when embraced by those around me leads to harmony in the home.

Unfortunately, I can no longer fly through the house and accomplish tasks as quickly as I used to, so my well intentioned family helps pick up the slack. Did I mention that each member of my family is uniquely gifted with their own sense of logic? This is important to note because later when you are looking for something and it's not where it used to live for the last thirteen years, it would be helpful to understand how someone else arrived at the conclusion that the logical place to put that something, was in the garage on a shelf that you can no longer get on a ladder to reach. Without this fundamental understanding and a sense of humor, the combination of ALS and OCD can be a recipe for wishing you had lost your mind too!

On that note, I'd like to thank my sweet 8 year old daughter for offering to carry my Blackberry downstairs for me this morning. Honey, next time please don't take it to school with you...Mommy needs it.

Monday, October 3, 2011

And so it goes...

Days turned into weeks and weeks into months and I began to mark time with the changes in my mobility. Looking back, in January and February we were cross country skiing and ice skating, and I fell numerous times as one would expect on the ice and snow, nothing really odd about that. Yet at my daughters seventh birthday party, for the very first time she skated past me and said "Hey Mom, I can skate faster than you!" At the risk of sounding ruffled at the thought of being upstaged by a seven year old, I'd have to say something was wrong. You see, I had been rollerblading for nearly twenty years, and when I skated it was with speed not grace, I would always push myself to the limit, but on that day something didn't feel right, and she passed me several times as I cautiously moved about the rink. I had just purchased a new pair of speed skates, and I was excited to use them for the first time but I couldn't seem to find my groove. I wasn't sure if I just needed to get used to the skates, or if something changed but I took a hard fall and decided to step off for the day.

In March, I began to have increasingly pain in my right leg and lower back, I thought it was likely to be the bursitis I'd dealt with for the last twenty years aggravated by a tight IT band from the running workout I had been doing, so at the advice of a good friend I went to see an Orthopedic Back Specialist. He examined me, prescribed an anti-inflammatory drug and physical therapy. In April and May I saw a PT and diligently did my exercises and stretches but we couldn't seem to get rid of the pain and I had developed a limp in my right leg, or as I later learned was called a gait disturbance. I could still walk at a very brisk pace but my right leg was slower than my left and it was noticeable.

On Memorial Day weekend the weather was beautiful and I decided to break out the rollerblades and try again. Maybe the wheels on my new skates were better on pavement than an indoor rink surface; I just needed traction! I skated cautiously, first in the garage, then the driveway and finally on the street in front of my house, back and forth I focused on how I shifted my weight with my hips and heels. No quick turns or fancy stops, just an even stride and concentration on finding my groove. No luck, it must be these new skates; pull out the old K2's and get back up, try again, try harder; you can do this, the voice in my head continued to push me. But the old skates did not revive my groove, and I wept on the floor of my garage knowing something that always brought me great joy was lost.