Category: Symptoms

For the Love of Dog

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I have become a tobii wizard. It’s true. Once upon a time, it took me fifteen minutes to type one paragraph. Now, I glide across apps, carrying and adding to my content, dipping into shortcuts to rearrange my words into uniquely crafted messages that sound authentic to yours truly – all at a speed that constantly wows clinicians. Despite my skills, though, using the tobii is still taxing work. I will never be fast enough to keep up with the natural flow of conversation. Still, I hurry and exhaust myself in the process.

However, there is one individual who eases the tension of the race to communicate because she is also nonverbal. For five years, Malka (introduced in “Someone to Watch Over Me”) has been my faithful, furry companion. On the surface, we don’t have much in common: she has four legs and I have wheels, she swallows her kibble whole and a gravity bag slowly drips formula into my stomach. I am becoming  more mechanical, and she remains pure, divine animal. But when we lay down side by side, we speak our own secret language. Eye contact and perked ears or my raised brows, touches, wiggles, and wags… There’s nothing we can’t say, and our talks are just my speed. She’s a source of solace like no other as I fight the monster inside of me, and sometimes when she looks at me, I swear she understands what I am fighting and her role in the battle. I am endlessly grateful for my silent soldier.

This song reminds me of my fur baby every time I hear it. It also reminds me of Evan, but pretty much everything does. “We laugh until our ribs get sore, sharing beds like little kids” even though everything outside of them grows scary. At least we have each other.

Getting Back My Voice?

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This news is both moving and a profound reason for hope! When I was diagnosed three years ago, voice banking would have taken eight hours, and I simply didn’t have the strength – or money – for such an endeavor. As you will see in the video,141136 this company was able to recreate this man’s voice with only three hours of recording. Maybe one day, my half hour of recording will be enough to get my voice back!

“I’m shouting hard… This is the start!”

The Sun’ll Come Out April 19th

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I haven’t written a lot about the problem that has rendered me bedbound for quite a few months now. You may think you understand the severity of the situation. However, what you know is the tip of an iceberg that you soon discover is actually the edge of a glacier that is moving inevitably into the sea to raise and heat the ocean around you. In other words, you don’t know the full story. Yet.

The first two minutes of this video offer an explanation of what has been happening to my body.

The spasms affected me first in predictable ways, like decreasing my mobility and flexibility. Then my caregivers began to struggle to dress because of the extreme rigidity of my joints. Bye bye to my fitted retro clothes. Hello baggy sweaters. Maybe this doesn’t sound like a real loss, but when you have ALS, or even just live in a wheelchair, there’s already so little you can control about the way you present yourself to the world and the impression you make. A teal camisole under a blue tunic topped with a gold 1960s cardigan was my way of telling new people, “I may look kinda funny, and yeah, I need a computer to talk, but I’m happy and playful!” Those clothes made me feel like my old self. Losing the clothes was a stinging paper cut type of hurt: sharp, yet invisible.

Soon, the effects of my spasms took unexpected, dangerous turns:

– I spasmed in my shower chair and nearly fell. I would certainly have broken a bone since my limbs were locked.

– My jaw clenched so hard that I can’t brush my teeth anymore. This put me at risk for more than cavities. Dental hygiene is a first line of defense against pneumonia, which is all too often fatal for people with ALS.

– I became bedbound because moving me became too risky with how violently I shake. As a result, I am vulnerable to circulation problems, bed sores, and serious mental health issues.

I am now officially on every antispasmodic and pain medication my mind can handle. I had another one, but it causes nightmares so violent about the pets, I am haunted by them. I can’t even tell Evan, that’s how bad they were. Still, despite all the medicines, my spasms are so bad that I even sense them in my dreams and wonder why my dream body is shaking. Other people in my dreams avoid me because they are afraid or judgmental. The new medicine disturbs me. I wake up suddenly because, for example, I hear a crow and see it rushing at me out of the dark with the face of a human. I also have a black owl with raven feathers who guides me through the dark forest that is now my dreamscape. (clearly, I’ve been reading too much Rosamund Hodge). I wake up in pain, exhausted, and breathless.

I wasn’t supposed to get to this point. My doctor recommended that I have a Baclofen Pump implantation eight months ago, which my insurance denied immediately. So began an epic struggle with my insurance on one side and my doctor, the amazing team of nurses at the clinic, and my mom fighting valiantly on my behalf. Guess who finally won? Are you guessing the good guys? I can’t see you. You should be guessing the good guys.

BUT BEFORE THE SURGERY… I needed to do a successful Baclofen Pump trial.

The trial will look like this. No needles are actually shown in the video, only syringes, the tubes that hold medicine at the top of a needle. There is no blood. You can safely watch this while eating lasagna and your weak little tummy won’t so much as turn.

The trial was four hours of pain, but I got through it. Evan was with me, and Evan makes all suffering 50 – 75% better according to the latest study in the Harvard Medical Review (2017 Nov. Volume 4). The pain wasn’t caused by the needle in my spine – been there, done that – but by the fact that I can’t have any baclofen – my main antispasmodic – before the procedure, and it took four hours for the baclofen pumped into my spine to take effect. That meant four hours of spasms so intense that my whole body shakes and cramps, my jaw rattles, my teeth start chattering so wildly that I actually chew skin off my lips, and I beg Evan to cut off my limbs (usually starting with my right arm).

It was worth it, though, because it worked. The trial worked.

I forgot how luxurious it is to feel comfortable in my own skin, and after April 19th, the date of the surgery, I will feel that way all the time. the other side of the surgery…

I imagine that’s where sunshine lives, the daylight outside my bedroom window that I so long for. It’s where holding hands with Evan on the back porch watching the dogs play has been waiting for me, and so too the quiet scent of the poetry paperbacks in the last aisle of the Blue Room at Powell’s City of Books.

On the other side of the surgery is everything I love and live for, and I am overjoyed that I will have it again.

I will keep you posted on the events around the surgery. For now, start around minute two where the pump first shows and stop before the explanation of side effects to gain a better understanding of how the implant works.

Draw on the Magic of New Years to Improve Your Health (Even if You Have ALS)

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I have never really been one to get excited about New Years. Early on, my mom instilled in me a lasting fear of the hordes of drunk drivers careening about all night. I am now 30 years old, and to this day, I have never been to a New Years Eve party I couldn’t walk to. I will probably continue this habit for the rest of my days because no one can prove that it hasn’t saved my life.

Rachel does a Sparkler Dance

2006 ; The acceptable distance to a New Year’s Eve party = My front porch

As for New Year’s resolutions, I remember my dad saying every single year, “I don’t see the point of making resolutions. If you need to make a change in your life, don’t wait. Do it immediately.” This advice, combined with my perfectionist tendencies, made me a reflective, proactive individual.

Lately, though, I have been thinking about the value of making resolutions. I still agree with my dad’s advice because, frankly, if you’re only taking stock once a year, you’re not living your best life. However, when everyone around you is examining their lives and discussing changes they want to make and goals they want to set, a uniquely supportive environment forms. If you randomly tell someone at any other time of year that you want to be better about keeping in touch with family or watching less TV, you just don’t get the same reaction as you do if you share those goals as resolutions around New Year’s. This time of year lends gravity to decisions. It signals that this is a Big Deal to you, which can elicit bolstering enthusiasm from your social circle or prompt advice and conversation. Best case scenario, you may end up with a resolution buddy who loves your idea and hops on board. Having someone to help you through rough patches, prevent backsliding, and celebrate successes with can make all the difference in the world.

Because mental health is on my mind more and more, I have been thinking about what gets me down, what triggers my depression and PTSD, and how I handle (or more accurately, don’t handle) stress. I began research new-to-me ways to improve my mental health and maybe even my physical health as a result.

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This NY Times article offers suggestions on ways to be healthier in 2018 that even those of us with ALS can try. The ones that appealed to me the most were:

  • GETTING BETTER SLEEP 147154 – There is a LOT of information on this page. It is divided into five sections, which you can navigate by clicking on the submenu text immediately beside the title in the black bar. Or you can just hit the down arrow. I especially liked “How to Wake Up,” which is nested under the section called “Morning Lark or Night Owl.” (See what I did there? Nest? Lark? Owl? You’re welcome.)
  • CONQUERING NEGATIVE THINKING 151155 – The art of acceptance is a tough one to learn, but if I want to stop the cycle of dark thoughts that keep me up at night, I better start learning.
  • REDUCING STRESS 151156 – Whatever your anxious little mind likes to obsess over, from relationships to your health, there’s something here to help. Now the key is not to stress about reading this whole article.

One of the ways that the article lists to decrease stress on the body and mind is yoga. That may seem impossible for many of us with ALS, but chair yoga is real thing. I recommend exploring video guides on YouTube by searching “gentle chair yoga,” which will yield countless results. I especially enjoyed this ten minute wheelchair yoga video. The neck stretches felt heavenly (using the Tobii requires me to keep my head very still, and after a few hours of writing, I get vicious neck cramps).  I could not actually do most of the movements because I can barely move my arms, but I think a caregiver could help me. I’m super excited to see if I can get in Eagle Pose. Before ALS, that was my favorite way to ease back pain. Note: it  is important that you do close your eyes when the instructor tells you to. This will allow you to focus on the sensations of the practice.

A Happy Halloween

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I consider this Halloween costume an absolute success. I dressed as the Little Mermaid, and had a sign on my wheelchair to tell people that ALS stole my voice! Ursula, you’re off the hook. Plus, I had some royal arm candy (wink wink).

I am glad I was able to dress up and pass out candy to a gaggle of cute kiddos. Earlier in the day, I had such severe pain that I missed some important doctors appointments. I do take an abundance of pain medication, and it works well on days when my spasms are mild, but when they are more intense, my body locks and shakes so violently that my joints hurt. Afterwards, I am breathless, exhausted, and so sore I feel like I just ran a marathon.

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As I wait for the surgery that will fix the problem of my spasticity, I am learning that a key to living happily – with or without ALS, is to practice resilience. I say “practice” because it is a skill that takes intentional, daily cultivation. I used to think of resilience in terms of bouncing back after a major life event, such as getting fired or going through a break up. Now, I understand that resilience doesn’t mean bouncing back. We are not deflated basketballs who will return to their original shape with an infusion of air. Difficult events, large and small, change our shape, so we can’t return to how we were before our day is marred by illness or a boss who shoots down our exciting idea. We are human, so we experience anger and sadness. The trick I use is to give myself a bit of time to feel those emotions, and then set them aside to salvage the remainder of your waking hours either by carrying on with your original plans or practicing self-care by doing something rejuvenating. If you choose a passive activity like binge watching your favorite show, check in to make sure you aren’t just numbing yourself by asking questions like, “Am I enjoying this? Is my mood improving?”

Note that I am not suggesting that you bury your feelings. I am saying not to let them rule. Revisit your feelings as much as you need to in order to be at peace. Put in the time and work to process your emotions. That may mean discussing your feelings with a friend, venting in your journal, or talking to a counselor. Just know that repressed emotions always rise up, and when they do, they tend to feel ten times worse.

Also keep in mind that salvaging a rough day that isn’t always possible. Some days really are ruined by traumatic events  – for example, taking a loved one to the ER  – but hopefully those are few and far between.

Feeding Tube Foodie; or How I’m Being Lured to the Dark Side

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The sound of the microwave whirring to life sliced through my interest in the book I was reading in the living room. I made a beeline for the kitchen where my husband Evan was clearly up to something delicious. (it was a good day for me in terms of hand strength, so I was able to steer Ruby, my beloved power wheelchair, myself) Just as I suspected, Evan was warming up some leftover pizza.

“Hey, hun. Is that your dinner?” I asked. I knew I had to play it cool to keep Evan from becoming suspicious.

“That’s the plan,” he replied, settling in at the kitchen table.

“I think I’ll just hang out here while you eat,” I said, rolling up to the table. “Hey, as long as I’m here, can I watch you eat?” I grimaced. Real smooth, Rachel.

“Um, I guess.”

“Cool, cool, cool.” Yes, keeping it casual. This time, I would control myself. I would NOT make it weird.

Evan took a bite, then another. I was riveted.

“You’re really starting at me.” He shifted in his chair.

I made a conscious effort to blink before saying, “You know, I was just wondering if you can try chewing slowly.”

With obvious discomfort, Evan complied with my request. One bite later, he stopped. “You’re leering at me. It’s freaking me out. I am going to eat in the living room.”

I huffed in frustration when he walked away. I miss food desperately, and I am always looking for ways to hold onto at least the memory of the joy of eating.

At my most recent clinic, my speech therapist put me on a pureed foods diet after she discovered that I can no longer move my tongue from side to side. Losing that motion makes me unable to sculpt my food and move it between my teeth. As a result, I have little control over where the food in my mouth goes. I am at risk of choking if I deviate from the pureed foods diet because anything I eat can slide to the back of my throat and block my airway. Even crumbs are a danger. Then there is the possibility that tiny particles of food may slip into my lungs without me even knowing it. This puts me at risk for pneumonia, which can be fatal to someone with ALS.

To protect my lungs and prevent choking, I get most of my food all of my hydration through my feeding tube (I can’t drink water because it moves so quickly that aspiration is inevitable). I eat orally at dinner, usually a pureed soup my mother-in-law Brenda made for me that morning – she concocts everything from broccoli and feta soup to savory butternut squash puree – or a fruit smoothie. I get a decent variety of flavors, but the lack of texture is starting to get to me, I fantasize about chewing on a piece of cheese or sinking my teeth into crisp slices of tomato, bell pepper, zucchini, and apple. Lately, I am nursing an obsession with all things toasted, specifically paninis. The longing keeps me up at night, and I suspect it’s chipping away at my sanity, which led to this, ahem, eccentric text exchange with a friend. Read on to witness the burgeoning madness of a Foodie on a feeding tube…

Me – I would do unspeakable things for a panini.

Melissa – Has anyone ever invented something like a chew toy for humans?

Me – Someone really should. I want to bite something and feel it crunch.

Melissa – I feel like I could put a panini in some mouth safe baggy and hold it in your mouth to feel on.

Melissa – Or I could just put a panini in your mouth and then take it back out, over and over, with purée in between so you get full.

Melissa – These might be very foolish, even offensive ideas. I just would love to please your mouth. I feel so strongly for food and I can just imagine the panini longing.

Me – no, I love it! I would drool all over a panini bag.

Me – I am desperate and the more desperate I get, the more violent I am willing to be to get what I want.

Me – I am like bargaining with some powerful dark force. ” if you let me eat a panini, I will burn down Chicago.”  **

Melissa – I can’t say I know what you’re going through, but i know it can’t be easy! When I’ve had to not eat solid food for just some period of time, i went mad.

Me – I always saw myself as a force for good, but it has taken so little to push me over the edge. Am I truly a slytherin when all my life I thought I was a hufflepuff?

Melissa – Serious hunger can push any human to the brink.

Me – Exactly. My teeth are depressed. They have lost their purpose and they are not taking it well. I think I feel at least two spite cavities forming.

Me – Can I put this conversation on my blog? I think it is a wonderful representation of my life as a feeding tube foodie

Melissa – I’d be honored.

 

 

 

Save Medicaid from Being Slashed!

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The health care bill draft currently being reviewed by the Senate slashes Medicaid to the bone. If the bill is passed, 14 million of the most expensive beneficiaries – particularly, the elderly and disabled, including those suffering from ALS – will be kicked off Medicaid! Use the following text to write to or call your representatives and let them know that you expect them to oppose this health care bill (contact information here138). We must act quickly since senator Mitch McConnell intends to have the Senate vote by JUNE 30th!

The Honorable [NAME]
United States House of Representatives (or: United States Senate)
United States Capitol
Washington, DC

Dear Representative (or: Senator) [NAME]:

I am writing to ask for your help to ensure that people with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s Disease have the coverage and health care they need and deserve. If passed, the Better Care Reconciliation Act will seriously impact the lives of people suffering from ALS and their families. In fact, it may even be a death sentence since many will be kicked off Medicaid.

The cost of living with ALS is staggering. Depending on the level of care a person needs, expenses can reach $250,000 per year. If patients are left with the burden of paying all the costs that Medicaid currently covers, these people will go without the feeding tube surgery and supplies that prevent them from starving to death. They will lack the medicine that relieves their tremendous pain. They will not be able to afford the caregivers who help them with toileting, medication, tube feedings, bathing, and monitoring vital machines such as ventilators. Most cruel of all, thousands will face the decision to go on a ventilator, or forgo the life-saving procedure in order to avoid bankrupting their families. In short, thousands of Americans with ALS will lose their dignity and their lives an agonizing death if they are deprived of Medicaid. (Optional: insert personal story of the impact of ALS on your life).

This is a matter of life and death, not politics. This health care bill is inhumane. I know there are a number of initiatives and programs under review. However, I think, and I hope you do as well, that Medicaid, which saves the lives of countless citizens, must be preserved and well-funded.

As a resident of (STATE), I hope that I can count on your support and look forward to watching closely as the health care bill moves through the legislative process.

(Optional) If you need more information on the impact of ALS on the people in our state, please don’t hesitate to contact the ALS Association of (STATE ORGANIZATION) at: (insert chapter website).

Sincerely,

Your Name

Pacing Myself

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I have always struggled to acknowledge and accept my limitations to the point that I often push myself far past them. From middle school through college, I participated in at least three extracurricular activities each year. OK, that’s a lie. It was more like four or five. I was in a leadership position as often as possible, too. Of course, that all came on top of a driving need to get straight A’s (and yes, I know that is a misplaced apostrophe, but I stand by it as a legitimate way to make a letter grade plural).

Latin

In high school, I was president of Latin Club. In this photo my dad and I are on a Latin Club field trip.

My first year teaching, I started the middle school book club, served on the information technology curriculum committee, proposed and planned an interdisciplinary curriculum fellowship and a fellowship to rework the English curriculum to include multicultural literature.

I love being busy, operating at full speed, running out of room in my planner, making multiple to-do lists and slashing through each item before falling into bed exhausted.

Now, though, at least half the days of the week, just functioning leaves me too tired to do anything productive. ALS puts such a strain on the body that simply existing is like running a marathon every day. Three years into this nightmare, I’m finally coming to terms with the fact that I can’t set the same amount of goals for myself as I used to. Doing that sets me up for depression, frustration, and failure. If I want to preserve my mental health and use my time well, I have to learn to prioritize and decide where to scale back. I’ve got to stop spreading myself too thin. Thus, without further ado, my freshly pruned list of goals:

1. Enact Phase 2 of my “Save the Registry” campaign (you didn’t really think I would stop at an article and blog post, did you?)

2. Fundraise for The Walk to Defeat ALS

3. Write one essay or section per week for my book on living with ALS

What I expect to sacrifice to accomplish all of this is the frequency of my blog posts and social media updates. Rather than posting every few days, I think it will only be manageable to post once every 1.5 weeks. I consider this a loss since connecting with readers is such a source of joy for me. However, I am hopeful that after I torpedo Trump’s attempt to defund the National ALS Registry and complete my fundraising efforts at the end of September, I will be able to write for my blog weekly. Getting my muscle spasms under control would also be a big help since I wouldn’t spend half the week sedated by Baclofen and Vicodin. The plan right now is to increase the amount quinine sulfate I take and undergo a test to see if installing a pump to push Baclofen directly into my spinal fluid would eliminate the spasms. The pump should increase the effectiveness of the Baclofen while diminishing the sedating side effects. I will definitely keep you posted on that.

For now, I will conclude by thanking you for your support of my writing, my health, and my dream of a world without ALS. I’ll write again soon(ish)!

A Wild and Lonely Belief

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9Dedicated to Dr. Goslin for giving me permission to believe, and my husband Evan, who shields me from the worst of the winter winds.

I am a voracious reader. I always have been, thanks to my parents and grandparents, who planted books around my house in places I could reach even when I was still crawling. They were treasures I was allowed to discover on my own, and as a result, they felt special and personal to me. The books I read in my childhood became a part of me in that they showed me how to dream, hope, and believe. Even now, those stories influence the way I understand the world and cope with the rocks and daggers it throws at me. When I spot trouble coming my way, I snatch up one of these books, opening it wide to use the front and back covers as a shield while I confer in hushed, hurried tones with the characters inside.

Lately the shield I crouch behind is the work of one J. M. Barrie, and Peter Pan is whispering in my ear: “Every time a child says, ‘I don’t believe in fairies,’ a fairy somewhere falls down dead… Do you believe in fairies? If you do, clap your hands! Don’t let Tinker Bell die!” I watch the children bring Tinker Bell back by clapping and shouting, “I believe!” But what good can Peter Pan’s words do me, a young woman dying of ALS? More than you might ever imagine.

You see, I have this conviction that I will not succumb to my disease. I believe I will survive this. I can count on one hand the people who share my belief. I often hear other pALS (people with ALS) talk about their sadness over the special moments they will miss after the monster we are all battling cuts their lives short. On the earth beneath which we have been laid to rest, our loved ones will blow out birthday candles, throw graduation caps into the air, walk down the aisle, paint nurseries, and build cribs. We can only hope they think of us now and then as the flowers of their lives continue to unfold long after our own blooms have wilted and shriveled.

That’s not my story, though. My blossom is wilting because winter has come, not because I am dying. Bitter winds may batter my petals, but my roots are safe and strong. They remember spring and are waiting for it to come again. I have been told not to get my hopes up, and my answer is always the same: “What harm can believing do? If I am wrong, I won’t be around to cry about it.” The fact of the matter – which I rarely endeavor to explain anymore – is that believing is a source of strength for me. After all, Peter Pan said belief can save a life. If you need to hear about the power of belief from someone with more authority, consult another prominent book from my childhood. Open the Bible to Matthew 17:20 where you will find the following words: “If you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you.”

To me, belief is so powerful because of what it inspires. The magic of belief lies in the way it empowers us to live, and when necessary, fight. I believe that I will be cured, but that doesn’t mean I expect an easy path. I know that only if I work hard and plan carefully, I will survive long enough to be cured. This conviction shapes how I live now. In order to last until the cure, I need to keep my lungs strong and clear with daily use of the cough assist and AVAPS machines. Each day, I also complete two dozen physical therapy exercises and follow my feeding tube meal program. I can bear all this and more – hours spent in the hospital for clinics and drug trials, daily vitamin injections, even a tracheotomy if my lungs fail – because I know that my story will have a happy ending.

This is my wild lonely belief: that I am not a withering rose, but a winter one, waiting with patient certainty for the sun.

Summer Dreams

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Something about spending time on a covered porch always leads me reminiscing and daydreaming. As the rain clears to make room for the summer sun, I spend hours out there, watching my dogs play and letting my mind float on the afternoon breeze, I remember, and I plan.

This beautiful weather makes me miss canoeing with Evan terribly. The sound of the water as our paddles slid through the gentle waves slowed my thoughts so I could exist in that moment, working in perfect synchronization with Evan. I especially loved our sunset excursions when the world we knew drifted off to sleep and another secret world began to stir, a nocturnal kingdom we could only glimpse before we lost the light and our way.

When I am cured, Evan and I will return right away to the water. We will buy a red canoe and name it Carlos, and he will take us on dozens of new adventures.

The other activity I am missing is something I only did once. I was shy and nervous, so I didn’t get up the nerve to try karaoke until rather late in the game. When I finally sang into that microphone, though, I was hooked. I especially loved singing duets with Evan (he makes everything at least ten times more fun). When I have my voice back, I am going to hit every karaoke bar in town!