I’m A Shopper
~ Ellie and I thinking about some retail therapy ~
I’m a shopper. That’s one of the things I love about myself. We love what we’re good at and I’m good with a capitol G. Even the remotest possibility of going shopping fuels me like no other and if there’s a sale you better lead, follow or get out of the way.
The passion and genetic evidence for shopping comes from my mother’s side. I was just a wee lass in a stroller when my tutelage began. If it were offered as a class, I’d be in the accelerated one and would have aced it with my eyes closed. Not bragging ~ just saying.
Nan, my ever loving ~ Irish ~ grandmother took me to every brick and mortar store in the Chicagoland area when I was growing up. Nan lived in River Forest, a western suburb of Chicago and Moppets and Marshal Field’s, both in Oak Park which was the next town over, were the two stores we frequented most.
Moppets was a small, popular children’s clothing and toy store in the 60’s and 70’s and down the street was Peterson’s Ice Cream so that worked.
Shopping at Marshal Field’s, the beloved department store in the Chicagoland area and surrounding suburbs, was kind of a win because we never left without a pastry box filled with petit fours (bitesize layer cakes with poured fondant icing) and bismarks (jelly-filled and sugar coated pastries).
But shopping at Marshal Field’s came with a price; it meant you weren’t leaving there any time soon. Nan loved to browse, meander, then circle back in what felt like every department they had. She could never resist touching every garment she passed before we headed to the next department ~ and what’s worse than that when you’re a kid?
On top of it, my beautiful redheaded Nan never tired, I was the old person always looking for a place to park her fanny. I adored my grandmother ~ so I kept all of my ~ whiny, ants in the pants, I can’t take another step, I’m going to die so pleeeeeze can we just go now, feelings to myself.
My mother’s style of shopping was quite different. Ellie had a magnificent sense of artistry in everything she did and shopping was no exception. (Actually my grandmother did too, she just took longer.) My stunningly beautiful ~ not exaggerating ~ mother whom I also adored, had razor sharp focus, never dilly dallied and much to my chagrin was another one that never tired.
She was in a league of her own and I miss them both terribly.
As if my genetic predisposition to shopping wasn’t enough, God saw fit to have me marry a developer who specialized in retail development. How’s that for irony?
I bring up shopping because that’s often where I come face ~ to ~ face with my struggles. I never think of myself as having limitations. Slow, yes. Limitations,no. Clothes shopping, grocery shopping, any kind of in person shopping meets me with a hefty dose of reality and why this catches me off guard, I can’t say. Maybe because in my head I’m still the old me. The old me that I was used to ~ for 49 years. That me.
I may not see myself as a handicapper but I sure do look the part as dressing rooms love to remind me.
When shopping for clothes, it’s always exciting heading to the dressing room knowing everything that caught my fancy will look so smart and snazzy once I get it on. (That’s the sunny side of me I can’t seem to shake.) After much pulling, wiggling, tugging, wrestling and yanking to get my clothes off, I start the whole process over again trying to get the new clothes on.
Then I stand up to get a good look in the mirror only to sit right back down again. The person looking back at me in the dressing room mirror is not exactly what I expected. She rarely is. She’s bent forward and leans to the right like the S.S. Minnow taking in water.
Does this ever happen to you? Do you ever think you’re going to see the old you just because you’re trying on something pretty and new?
Meanwhile, sales ladies are forever asking me if I need any help just because it takes me an hour and a half to try on 2 sweaters and a scarf. Rude. When I do finally emerge from the dressing room I look like I’ve gone twelve rounds with a 300lb alligator in a phone booth and I politely hand back the items because they just weren’t doing it for me.
I’m ok with going to 30 more stores till I find what I came for. It’s ~ the thrill of the hunt ~ my friends.
As my hands became weaker, my clothing options became fewer. Early on it was obvious elastic waistbands and loose tops would be my new besties. Turtlenecks, buttons and pant zippers were stealing my joy so they were sent packing almost immediately.
Aside from being one of my happy places, shopping is still something I can put my stamp on. My métier, my long suit, is the ability to find the perfect ~ they’re going to die when they see this ~ kinds of gifts. I’m the 6 year old at the party yelling “Open mine first! Open mine first!”
There’s lots of letting go when it comes to shopping with challenges, but you will not hear me complaining. No ma’am ~ I’m a shopper with a capital G ~ remember?!
…Which brings me to one of my absolute favorite shoppers at the moment.
Meet Molly from @all.fashion.able. Molly is another shopper with a capital G!
At 13, Molly was paralyzed from the shoulders down after a spinal cord injury and was told she’d probably never walk again. Most people would accept their fate but Molly is a warrior who takes no prisoners. She relearned writing, feeding herself and getting dressed as a lefty and walks with pink forearm crutches. And now she’s out there doing more heavy lifting. Literally ~ and ~ figuratively.
Molly shops for adaptive clothing in regular stores because she knows pretty clothes aren’t frivolous. They’re armor. They’re the difference between getting dressed and feeling like your old self again. Molly also shines her light on accessibility all over Chicago, the suburbs and wherever her travels take her. Molly is a Rock Star and someone you should know. Find out more about Molly @all.fashion.able.
The Mother of All Game Changers 2/2
~ Walkin’ for Kate ~
On “Walk day,” I was one half like a kid on Christmas morning, eager to see what Santa left under the tree. The other half was sitting in the endodontist’s office waiting for my root canal. I was curious, excited and filled with just enough angst to wish there was a ‘practice Walk’ first.
For starters, we couldn’t have asked for a more picture perfect day. Not a cloud in the sky but that’s not all. We had a gorgeous setting for an unforgettable day on every level. What made this Walk unique was we’d be walking through one of Chicago’s most iconic neighborhoods. One minute we’d be passing the Lincoln Park Zoo, the next minute we’d be walking through beautiful gardens.
Lincoln Park has always been a very hip place to shop, eat and the nightlife never disappoints. My friends and I have been known to trip the light fantastic a time or two there, ever since we could drive and ask for the car to go to the library.
Shortly after we arrived at the Walk, I spotted some friends and a few neighbors that had told me they were coming. Then out of thin air my brother Jimmy appeared!
My brother Jimmy who lives in Deerfield Beach, Florida!
Yes, that Jimmy! Wait, what?!
Next thing I knew, friends and neighbors started multiplying like loaves and fishes. Friends I didn’t know were coming, out of town friends, siblings of friends, friends of my siblings.
It was one surprise after another, and they were all wearing Walkin’ for Kate team t-shirts! This was the best surprise party I could have never imagined!
The great Lou Gehrig even made an appearance!
I’m sure there was music playing, registration and information tables buzzing and ALS staff and volunteers everywhere making sure the event ran without a hitch.
There could have even been streakers (those were the days, weren’t they?) but I couldn’t say for sure because…
I was seeing and feeling so much joy and hope on everyone’s faces, everywhere I looked. Even on the faces of those whose progression had taken everything but their spirit. They displayed a grace so beautiful you couldn’t help but be reminded of God’s presence. In what felt like a blink of an eye from when Megan announced we were signed up to participate in this Walk just 8 short weeks ago, here we were, hundreds of warriors, raising awareness and funds for an end to ALS! It was ~ OMG ~ all day long!
At the exact start of the Walk, the skies dumped a biblical amount of rain on us, non-stop, until the very moment we finished. We sloshed our way forward laughing, soaked and a force to be reckoned with, until we reached the finish line. And right on cue, the rain stopped.
The Walk ended around noon and since we were very near one of Chicago’s favorite diners, we invited the Walkin’ for Kate team to have lunch with us there. Ed Debevic’s is a 1950’s retro diner themed restaurant with a snarky waitstaff in full character who love roasting their customers, which was half the fun. You came for the experience. What a day we were having…
This entire day had been surreal. I walked in (pun intended), half expecting the Walk to have somewhat of a somber undertone and instead I left inspired and uplifted beyond my widest dreams. It flipped my perspective and turned my world right side up again.
Yes Virginia there is a Santa Clause. That’s what being part of a community of “ like warriors “ is like.
It was an incredible feeling to be a part of this new ALS community. It would still be another year and a half before I found my pALS (people with ALS), my other people ~ but this was a big win in my self-imposed, isolated from all things ALS world. I just wish I hadn’t told Ellie not to come..
Yes, I told my mother to not bother coming because it would be depressing. How did I know it would be a full blown celebration of courage and determination to wipe out ALS? The 2010, Walk to Defeat ALS at Chicago’s Lincoln Park was a Masterclass of joy and resilience. If you are sensing a theme of Masterclasses in my posts you would be correct. ALS is similar to one of those teachers you dreaded like the plague, but they are the ones you end up learning the most from. That day I found my voice. ALS may try to silence it, but it will never have the last word. God will.
The Mother of All Game Changers
It's glaringly obvious something is not right. By now I'm walking with a walker and wearing an electronic bracelet on my lower extremity, much like Martha Stewart's.
Even so, I was keeping my diagnosis semi private, only telling family, close friends and TMZ. As my teeny tiny, big things come in little packages Gramma 'O' used to say "If you're going out ~ take the party with you ~ if not, stay home." That's the Irish in me, we carry our troubles close to our pearls and beads.
Most people thought Lou Gehrig's Disease was something only baseball players got and that worked for me.
My mother called my malady the Tipping Disease because I fell so often. What can I say, Ellie called them like she saw them.
I could not bear ~ the visual ~ of my future self in a wheelchair and wasn't about to let others see my future self that way either. Keeping things upbeat and private was working out nicely until April of 2010. Then came the ~ great disruptor.
The Walk
In early April of that year, my daughter Megan came flying in the door one day over the moon, telling me she and her good friend Jordan were looking online for ways to help fight ALS and came across an upcoming Walk to Defeat ALS ~ in Lincoln Park.
Megan: "The ALS Greater Chicago Area Association, now ALS United Illinois, is having a Walk To Defeat ALS in less than two months and I signed us up! Isn't this wonderful mom?!"
Me: "Wait, wait, can you say that again Megs?!"
Megan: "Finally, there's something I can do to help you mom, something we can all be a part of, to help find a cure!"
Me: (Now everyone will know what I have.)
Megan began describing all the details of the event with so much love and excitement and I thought… how did we go from keeping my diagnosis under the radar to skywriting it over Lake Michigan?
I did the only thing a mom can do when her daughter's joy is a runaway train, I hopped on.
This would be a first. Not our first fundraiser, we've attended plenty of those over the years. This would be the first time I would be one of the faces and names people are fundraising and walking for. And this time my future self at every stage, would be on full display.
2010 Walk to Defeat ALS
The 2010 Walk to Defeat ALS was an outside event held at Chicago's Lincoln Park, right on the lakefront. You'd be hard pressed to find a prettier setting. This was their biggest fundraiser of the year, raising critical funds and the awareness ALS so desperately needs.
Each team would have their own custom made T-shirts and we'd all make our way around the park with music and balloons helping make the Walk fun and festive.
Even so, it broke my heart to imagine dozens and dozens of pALS (people with ALS,) at all different stages of this disease, gathered together in one place. All I pictured was a sea of wheelchairs and BiPAPS and it was killing me. This did not sound uplifting and no amount of balloons, cheering or even Chicago's captivating lakefront were going to convince me otherwise.
I kept all this to myself with one exception. My mother. I remember telling Ellie not to come. It would be too depressing. She was lighting candles and sending me Mass cards every other week as it was.
That's the Catholic way ~ we light a candle or two, call on Mother Mary, recruit our favorite saints and send Mass cards when someone needs prayers. If necessary we've been known to add a bit of Irish Blarney to make it convincing.
Megan wasted no time spreading the word and as you would expect, family, friends, and neighbors all hopped on the ~ Walkin' for Kate ~ train.
Our team shirts were made at Rumpleshirtskin, a great little uniform and printing shop in downtown Wheaton. Every year, the owner Jim would cheer us on saying he's praying for a cure! It's a blessing to live in a community like Wheaton, where people show up, shirts get made, prayers said and you never have to walk alone if you don't want to.
Leading up to the Walk I was split in two; one part of me was overwhelmed with gratitude, humbled by everyone's love and enthusiasm. (Like I just handed out tickets for a surprise trip to Ireland!) The other part of me? Still wishing I could disappear.
The great thing about my people is even in the heavy, they can always find the light and make you laugh. I would smile my way through the awkward parts and trust that we were meant to be a part of this Walk.
"Let go and let God" needed to be my mantra.
Turns out, I was as prepared for my first ALS Walk as a toddler for Wimbledon…
If you're wondering about the electronic bracelet, it's called a WalkAide — a device I wore on my calf for a few years that helps with drop foot.
Part 3: When Irony Roars
The irony of my ALS diagnosis was staggering. I couldn’t help but think of the cruel twist of fate my ALS would have on my husband.
Right now I had a different ~ kettle of fish ~ needing my attention. Understandably, people were forever asking me if the doctors knew yet what was causing my imbalance. Now that I was given the irrefutable diagnosis of ALS, Lou Gehrig’s Disease, it would be a cold day in Wheaton, before I was going to let the world in on my future.
So what do I say ~ when people ask?
Most people had never even heard of Amyotrophic Lateral Sclerosis and that was fine with me. I didn’t want them Googling it and feeling sorry for me. This was before the summer of 2014, when the Ice Bucket Challenge took the world by storm and took away much of the burden of explaining what you are dealing with.
The easiest thing would be to continue telling people what I’ve been telling them for the past three, long, years: the doctors still don’t know.
My husband’s mother Genevieve had a debilitating stroke in her 70’s leaving her permanently in a wheelchair, one year after her husband, Ted retired. He would be her sole care-giver for the next three years, until he passed. My lovely, inside and out mother-in-law sat in that wheelchair 10 long years. My future will require “wheelchair time” too, only I’m 49.
Do you see the irony here? My husband and I will be a repeat of his parents. Our lives would mirror his parent’s lives, he will be his dad and I will be his mom. I have a debilitating disease and my husband will be my care-giver.
Well, guess what ~ I don’t want a care-giver ~ how’s that for starters? I don’t want to have to ask for help, I was made to be the help-ER for heaven’s sake, not the help-EE.Why can’t I have something that doesn’t render me so desperately help-LESS?
Why can’t I be like Bette Davis, in the 1939 melodrama Dark Victory? Bette’s character relocates to the Vermont countryside after receiving her fatal diagnosis, and she exits quietly into the sunset.
There is nothing ~ graceful ~ or ~ private ~ about ALS.
ALS is not just a diagnosis, it’s a lifestyle. Anyone with eyes and ears can tell something is woefully wrong with you. ALS is the teacher you never wanted. She’s brutal. She strips away the ordinary; the casual walk across the room, opening the door for your 80 year old mother, telling the waiter you’ll have the curly fries instead of the side salad. Even getting dressed can sometimes feel like you’ve just finished Riverdance.
Then God showed me I could be ~ grace ~ filled.
God is good like that. Grace~filled has a beauty all of its own. He would give me the grace I needed to navigate my way thru this quagmire of crazy. I had to let go of what I wanted and trust in God’s goodness and grace, completely.
What I could not let go of was why my family had to be dragged into this? Why can’t it just be me, God? My husband saw the toll it took on his father, taking care of his mother for those three long years. Now he’s looking at the same future as his father’s.
You gave me a servant’s heart God, remember? You gave me a servant’s heart and I loved it, thank you, 1,000 times thank you! Remember that old adage ’Tis better to give than receive’ 100% it is. And now you’re breaking and taking away my servant’s heart?
It was going to take from here to eternity for me to come around to this ~ radical way of living ~ God was asking of me. He didn’t really ask me though, He put it out there and He let me decide for myself, how I would play out this new chapter of mine. It didn’t have to define me, but somehow I had to make peace with my ALS-self.
I would ~ walk closer with God ~ He would lead the way so I didn’t need to figure everything out on my own. He’s good like that.
I would ~ learn a new kind of grateful ~ no more taking movement and my independence for granted.
I would ~ learn asking for help ~ is not always about me. I didn’t have to like it, (still don’t) but it has shown me some of the most beautiful and loving sides of people, including strangers who then became friends, that I would have otherwise missed. I love their servant’s hearts.
ALS needed to become a bigger, more open part of my life, if the two of us were ever going to get along.
In time I would ~ do my homework ~ with a whole new perspective. Instead of turning away from all things ALS, I would get involved and see where it leads.
I’m grateful I was the one diagnosed with ALS and not not a family member ~ thank you God.
There are people who have never had one good day, I’ve had more than my share ~ thank you God.
There are families that have Inherited Familial ALS, mine doesn’t ~ thank you God.
I have the best family, friends and neighbors, I want for nothing ~ thank you God.
My progression has been slow ~ thank you God.
ALS has a surprisingly good sense of humor and we laugh a lot ~ thank you God.
My deep love and abiding faith in You has never been a struggle for me ~ thank you God.
Looking back, there were no coincidences. I now saw how God had been preparing us, my husband, my daughters, myself, for our own good/hard story.
My husband’s parents, Genevieve and Ted, when they should have been enjoying their golden years, were stopped dead in their tracks with Gen’s stroke. They moved half way across the country, from Oakland, California to Naperville, Illinois, to be near their children because they needed their help.
Their story became our stories. God could not have given us two finer examples than Genevieve and Ted on how to live a life they never would have chosen, graciously.
Now that my diagnosis was confirmed, we shifted our focus to searching for new therapies, new treatments, off label medications, anything new we could get our hands on that offered hope.
Slowly life settled into a new kind of normal in the years that followed with physical therapy and exercising taking center stage. I was swimming twice a week with a physical therapist and working out in our basement which now resembled a gym.
Whatever it took, my husband was 100% behind anything that helped me stay strong and kept me moving. I was still driving, still had loads of energy, still keeping my diagnosis on a need to know basis.
Yes, the irony here is outrageous but God’s loving hands in my life is more so. I may not understand the road, but I trust the One who walks it with me.
Part 2: One Small Sentence
Our last call to the diner involved a general neurologist and ~ not leading the witness. ~
In every other neurology appointment, we informed the doctors on where I’ve been, what was discussed and brought copies of test results, etc. This appointment would be very different. I would explain my symptoms, how long I’ve had them and then sit back. Nothing more. Nada. We’d let the doctor arrive at his own conclusion without being swayed by other opinions.
My doctor friend Col decided this was the plan of action we would take and I couldn’t have agreed more. This was a fabulous idea and I couldn’t wait for the appointment to get started. Today was going to be a very good day!
I’d walk into the examination room, get checked out and answer questions. This neurologist would finally see ~ what the others could not! He would give a definitive diagnosis, (preferably nothing too debilitating), then we could get the ball rolling with a treatment plan and/or cure before my symptoms progressed any further. Afterwards Col and I would have dinner downtown with our dear friend Nora, who worked nearby. We would probably dine el fresco since it was summertime and a gorgeous day in the Windy City.
The ~ unsuspecting neurologist ~ walked in, asked me some questions, tested my reflexes, watched me walk, and said “I’m going to send in another doctor to see you,” all under 15 minutes. Wow, this was a new record, every other neurology appointment lasted a minimum of 1 - 2 hours or longer.
Two minutes, later the ~ other doctor ~ walked in, introduced himself and asked me the same questions the first doctor asked. This doctor is very personable and chatty and all the while he’s making small talk and testing my reflexes ~ I fail to notice ~ the ALS letters on his lab coat. For the life of me, I don’t know how.
It wasn’t until the small talk stopped and the doctor turned and said YOU HAVE ALS, that those 3 terrible letters jumped out at me. I heard my husband say “So, you’re telling me what my wife has is something like catching lightening in a bottle?” “Yes.” Like I’ve been saying, what are the odds?
The doctor kept talking but I stopped listening. I could not pull my eyes off of those terrible letters on his lab coat. My brain was like the ticker tape at the bottom of a news channel, no treatment, no cure, no remission. That was the crawl that was stuck on repeat inside my head. I walked into that room positive I would leave with a hopeful, treatable condition. A new lease on life after being on hold for three years. Instead, ALS slammed the door shut on my dreams.
“How long?” I asked and the doctor said “could be 3 years, could be 20” I don’t remember what, if anything, he said after that, because I’m pretty sure I was on my way to having an out of body experience.
You know how when people ask if you remember where you were when we landed on the moon and you remember ~ e x a c t l y ~ where you were? Well this was my moon landing, just as momentous, only no celebrations.
One small sentence for the neurologist. One giant sentence, of a different kind, for me.
Well, we got half of what we came for, a confirmed diagnosis. The other half, the treatment/cure half, doesn’t exist yet. But it’s coming, and when it does, it will also benefit Alzheimer’s, ~ Parkinson’s, ~ Muscular Dystrophy, ~ MS ~ and others.
So, there we were, the three of us, my husband, Col and me. It was always the 3 of us. Col went to every single appointment. She took copious notes and her wheels were always turning, planning the next two or three steps ahead of who we should see and what to try next and ~ who else do you know ~ who does that? Only someone ~ so wonderful ~ you’ll never be able to thank them enough if you live to be 100, that’s who.
The drive back home to the suburbs was fairly quiet. Dinner with Col and Nora wasn’t happening now. Not really up for eating and laughing. Anytime my friends and I got together we laughed our sides off. Not today.
My head was killing me and I needed to turn off the ~ sunny side of the street ~ part of me. Now was not the time to give myself the old college pep talk. I had to s h u t ~ it ~ d o w n the same way this last doctor sh u t ~ it ~ d o w n for me. He dashed my plans and dreams, all in one fell swoop, with just two consonants and a vowel. I needed to get home and sit with my ALS-self.
In the evenings after my husband went upstairs I stayed downstairs. I went into the office, searched ‘people living with ALS’ on YouTube and watched endless hours of these videos, for months on end. The good, the bad and the terribly sad. I couldn’t get enough of this surreal way of life that I would one day be a part of.
I quickly learned that my best days are the here and now days, the days right in front of me. I needed to appreciate all that I can do. God never whispered this lesson; He hit me over the head with it.
Every neurology waiting room was a Master Class in perspective. One glance around the room was all it took to see how blessed I already was. I never wanted to look back and think I shoulda, woulda, coulda.
Gratitude is a major part of my story. I had a husband offering the world, whatever it would take to keep me going, daughters acting like personal research assistants, besties in the medical field cashing in all their favors, and family, friends and neighbors offering to do anything and everything; all I had to do was name it.
Irony is the other part of my story. Gratitude set the stage, but irony stole the show.
You might want to have a chair handy for my next post…
Part 1: Ignorance Was Bliss
I felt it, then I didn’t. ~ I felt it, then I didn’t. ~ No sooner did I feel it, than I’d forget about it, because it happened so infrequently. It’s only by looking back that I am able to piece together the first few years of my symptoms.
These “feelings” started catching my attention when they became a little more frequent. By “feelings” I mean just the tweensiest, littlest feeling of imbalance.
So I asked our personal trainer if losing your balance had anything to do with menopause? She did not think so and suggested I see a doctor.
Up until this point the only doctor I ever went to or needed was a gynecologist so I found a primary doctor. She watched me walk, had me follow her pencil with my eyes, asked a few questions, told me she didn’t see anything unusual and to keep exercising.
So I did ~ I kept exercising ~ and put that baby to rest.
Despite exercising more, these “feelings” of imbalance weren’t lessening ~ they were actually increasing. I especially noticed it when moving slow, slow as in standing in a line that’s moving inches, not feet.
It wasn’t until I started falling, that I took what was happening a little more seriously. I mentioned losing my balance and falling as a result of it to two of my closest childhood friends, Col ~ a doctor and Mar ~ a nurse. Their reactions were alarming and it wasn’t long before they were pulling strings, getting me into the top Neurologists in Chicago and beyond.
At the time, “Ignorance is Bliss” was my first, middle and last name, when it came to thinking the changes I was experiencing were no big deal. Maybe my symptoms would mysteriously disappear in the same way that they mysteriously appeared. I mean, why would I think otherwise?
I was in my late 40’s, married with 2 high school aged daughters, rarely got a cold, no history of serious illnesses in my family other than the typical things that happen to parents and grandparents as they age and Empty Nesterville was right around the corner. Life was going along swimmingly ~ until it wasn’t.
And so began three years of neurology appointments, testing and waiting.
The first year of our search I was evaluated at three big hospitals in the Chicago area and at Mayo Clinic in Rochester, MN. The second and third years of our search included three more big hospitals in Chicago and a trip back to Mayo Clinic.
Despite seeing Top Dogs at Chicago’s top hospitals, most were reluctant (except one) to confirm a diagnosis until the 3 year mark because of how slow my symptoms were progressing. Besides, what are the odds of getting something so rare, so cruel, that on average in 3 to 5 years it robs you of the ability to move anything but your eyelids? No thanks, I’ll take Exotic Viruses with Cures for $500.
ALS is a diagnosis of exclusion. It’s complicated and takes time. It takes ruling out everything else before doctors give you those three awful letters.
Your initial neurological evaluation includes testing your reflexes, muscle strength, coordination, speech, swallowing and walking. Listed below are the standard tests used in testing for ALS.
EMG’s are needle tests in your muscles, looking for abnormal electric activity and picks up signs of nerve damage and muscle denervation.
Nerve Conduction Studies (NCS) measure how well your nerves carry signals and helps distinguish ALS from neuropathies.
MRI’s (Brain & Spinal Cord) help rule out tumors, MS, and spinal cord compression.
Lumbar Punctures (Spinal Taps) help rule out infections and inflammatory conditions.
Blood & Urine tests check for autoimmune diseases, thyroid problems, heavy metals and vitamin deficiencies.
Pulmonary Function Tests measure breathing strength.
Genetic Testing (if there’s family history) & Muscle Biopsy (if muscle disease is suspected) are the two tests I did not need to have done.
Repeated Clinical Exams over time. Because ALS shows progression, doctors repeat these tests to track the progression of muscle weakness in different regions of the body.
ALS is finally given as a diagnosis when both upper and lower motor neuron signs are present and are spread across different regions of the body. These signs include: stiffness, spasticity, brisk reflexes, twitching, muscle wasting and weakness. They randomly appear in no given order and in various degrees of progression making everyone’s journey unique.
About six months into the first year of our search for what ailed me, I started having to use a cane. I remember getting out of my car one day to buy flowers and the wind almost knocked me over. That was scary and a wake-up call I couldn’t ignore anymore letting me know I’m not as steady on my feet as I used to be.
I got back in my car and thought…huh? Maybe it’s time? So I drove straight to where I needed to go.
The door wasn’t even halfway open before all the charm of a DMV rushed out to greet me. Nothing says Welcome to Disabilities like a home medical supply store.
No cute displays, nothing sparkly or bedazzled, just rows and rows of medical devices and compression socks in fifty shades of beige. The only positive was I wouldn’t have to worry about any impulse shopping.
Thankfully the canes were located near the front of the store because the lump in my throat would have prevented me from asking where they were. When I tell you the selection of canes was grim, I’m being polite. Not a pretty one in the bunch so I settled for the least offensive cane then suddenly realized, I don’t even know which hand to hold it in? That’s when the dam broke.
I turned and asked the sales lady, in between sobs “Do you know which hand I’m supposed to hold this in?” She answered “No,” and kept looking at me so I quickly paid for my aluminum, leopard spotted cane and tried not to let the door hit me too hard on the way out.
How do you work with wheelchairs and oxygen tanks and not engage with your customers even a dot? C’mon, it’s not like people come in here for fun? And for the record, the standard answer is ~ you usually hold the cane in the opposite hand of your weaker leg. This supports you when that leg steps forward.
~ I’ve come a long way baby! ~ What I wouldn’t give now to only need a cane to help me walk, even an atrocious one.
Picking up a temporary aid until I was given the right medicine shouldn’t have phased me but it did. The sight of so many walkers and wheelchairs hit me like a ton of bricks and I thought, “Please God, don’t let this be a sign of things to come.” What if I need a cane or worse,forever? What if I was only at the beginning of what was happening to me?
And right on cue the sunny side of me chimed in “Stop it right now. What are the odds of having something serious when you’re healthy as a horse ~ don’t be ridiculous ~ you’re fine.”
My degree in armchair medicine convinced me I had a temporary situation happening, like a vitamin deficiency or some kind of crazy virus both of which would be an easy fix. We find out what I’m deficient in or get the antidote to my virus and then I can get my life back. Check.
My friend Mar and I watched Medical Mysteries in hopes there’d be someone like me on the show. My answer was out there somewhere but in the meantime…
I couldn’t hide ~ that all was not right in my world ~ now that I was using a cane and had foot drop. The kindness and concern of friends and neighbors that first year was overwhelming and 90% of the time lunch was included. I never ate so well in my life.
Whatever was happening Christ was right there next to me. I never had to ask ~ God, where are you? ~ because I never doubted His presence.
Faith is key. Faith in God, faith that you and your story matter, faith that trials and suffering are never in vain. Faith matters if you don’t want the tidal wave of whatever crisis you’re going through to swallow you whole.
Don’t get me wrong, I ~ pray ~ plead ~ and give God advice just like the next guy. God hears me. He hears all of us and God will give us the grace to see us through, come what may. His grace is sufficient. God is good like that.
After three long years of going round and round the neurology block, my doctor friend Col came up with a genius plan. This would be the ticket, the answer to our prayers!
What happened next ~ I never saw coming…