I got up this morning and Facebook asked me what’s on my mind? Nice of them to inquire.

Well I have to admit that I have been reflecting on one word as an ALS patient, that word is “wait/waiting”. Waiting is something that we ALS patients master as our condition progresses. Mastery comes through long periods of meditation… Or so it seems until someone realizes we actually need something.

Indoctrination into the Master Waiting Program begins at the doctor’s office. As the patient and their loved one patiently await the physician to return, after they say, “hmm thats interesting”, excuse themselves by “saying I’ll be back in a moment”. It may be 5 minutes or 30 minutes, but to us it’s an eternity. And then the physician returns with the devastating news that you have ALS. Worst of all are the following words, ” there is no cure and all we can do is prepare you to have a good quality of life”. Here’s the contact information for the local chapter of the ALS Association, I’ll give you a few minutes”

This scenario plays out time and time again. I personally think it should be considered a form of hazing. This being because we are indoctrinated into an exclusive Club that no one wants to be a part of.

Mastery of waiting continuous as our condition progresses. Everyday we are waiting for another part of our body to no longer function. We expect it but it still surprises us when we wake one day and your arm hand or leg basically becomes like an obstinate child and simply won’t do what you ask of them. All of this is the normal progression based on the history of ALS.

The medical establishment believes that we patients lose weight because we slowly lose the ability to swallow. I’ll let you in on a little secret, that’s not the reason. The real reason is that we have to wait an exponential period of time for every bite. Allow me to elucidate; we as patients are patiently waiting at the dining table to be fed, we are dependent on others for our sustenance as we can no longer use our arms and hands. If you were to be an observer at our dinner table you would notice a very animated conversation regardless of the topic. And if the person who is feeding me is enthralled by the conversation I have to patiently wait until they turn their attention to me. I know I’m going to hear about this next statement, just know that I love you Meg. If you know my wife you know that she must have some part Italian in her genes. When she talks she can’t help but use her hands to express what she is saying. Picture the following… She takes a spoonful of food and raises it to my mouth. As I maneuver to take the delectable morsel the conversation takes an upturn and I find myself chasing the spoon as Meg speaks with her hands, LOL. Remember I love you sweetheart! To be honest this happens with anyone who is feeding me. I often joke by behaving like a baby bird waiting to be fed, pew-pew-pew…

These types of scenarios play out every day for us as patients. So you see we quickly achieve black belt status at Wait-Kun-Do or Yu-Wait-Long, depending on which art form you practice.

Ultimately from the moment we receive the diagnosis the waiting game begins. Knowing that we and our loved ones are waiting for the inevitable.

As ALS patients we must learn to be patient with our families. We must remind ourselves that our families are learning to cope with our condition also. We as patients should be proud and happy if the dinner table continues as it has always been. This is just the new normal.

I hope everyone has a super fantastic day, be blessed.

The Juan and Only

What does ALS feel like? Let me see if I can put it into words…

Hands, have you ever carried a heavy item and when you put it down your fingers won’t move, they are stiff. After a moment they return to normal. Well for me they don’t, they remain stiff and unresponsive. They are also very weak, can’t grasp or lift a tissue.

Legs, when they aren’t cramping they are weak and while walking they don’t respond to my desired requests. They actually feel as though I have 100 pound ankle weights strapped to each leg. My knees and anklets give out from time to time risking a fall.

Eating, first off it is unavoidable that ALS takes the ability to swallow, however it begins with the tongue. You see the tongue becomes unresponsive and difficult to control. At this point imagine getting anesthesia in your mouth and your tongue is affected. In essence manipulation of food is challenging. This makes it difficult to move food away from the back of your throat causing frequent gagging. Now the epiglotis, the flap that separates your airway from your esophagus, well it starts to falter, allowing food to remain at the opening. This causes repeated swallowing and can lead to coughing and choking.

Laryngeal spasms, has your dog ever sounded like they are about to hack up a furr ball? Thats a spasm. In a person its sounds very scary. Imagine getting the wind knocked out of you, when you try and take a breath you cant… thats what it sounds like. It scares my family every time.

Neck, many ALS patients lose muscle strength and tone in the neck as it progresses, thus needing neck braces or head restraints. Imagin having a 50 pound weight on your head, eventually you can’t hold your head up. Many patients can’t hold their heads up so it look like they are looking down constantly.

Breathing, simply put, try this at home. Gather the following: large shake straw, regular straw and a coffee stirrer. Now try this, take a normal healthy breath, now repeat breathing through each straw. You have just simulated progressive respiratory decline in an ALS patients. Now don’t panic and catch your breath.

Last exercise; now find a a busy location in your home, sit in a chair and don’t move, think of your favorite drink or snack. Now without speaking or moving communicate to your family that you would like that drink or snack.

This is what ALS feels like…

TJ&O

Living with ALS:

Disparities between pALS (Person with ALS)

If you only knew how many variations of ALS there are. Not types or distinct versions, but manifestations. From onset to the final moments. Yes there is a constellation of symptoms everyone shares. However each one person manifests their own spark of light, their own symptoms. If each were a distinct color there would be a spectrum so large that you can’t even imagine it. It’s maddening to see one pALS deteriorate aggressively yet others remain with a single physical deficiency for years, eventually though ALS progresses for everyone.

I personally know this all too well, having lost friends all too quickly as I progress at a modest pace. I am both grateful and deeply saddened by this. I have connected with pALS from around the globe who have been living with ALS/MND for many years. This lends credence to the randomness of this disease. Five years from diagnosis and possibly six and a half of symptoms I can:

Still stand & walk with assistance
Eat a normal diet
Speak
Breath without mechanical assistance
Have limited use of my hands (every post with one finger)
Act like a fool (per my wife)

Each one of us simply tries to hang on one more day, one more moment. In the end moments are all we have, all of us, ALS or not.

Enjoy every moment with your loved ones.

Truth behind the strength and resilience of persons living with ALS.

You have read time and time again from me and many others how strong ALS patients are. There is truth behind this. But where does that strength come from?

Are ALS patients just wired differently? I venture to say no, we are not. We simply choose this outward affect for several reasons, let me remind you these are my thoughts.

For me the reasons are: Anger, Fear, Resentment, Obstinacy and a slew of many other feelings and emotions.

Anger because I don’t deserve this, neither does anyone else. This is a dreadfull way to live, knowing there is nothing you or your loved ones can do. Angry because my wife, kids and parents don’t deserve to live with a ticking time bomb that is ALS. Angry because so many organizations have the ability to make drastic impacts on ALS, yet money, politics and outdated health care policies stymie progress.

Fear, because, well it obvious; because its scarry as shit to live with ALS. Im afraid of waking up trapped in my body. Afraid of leaving my family with a gaping hole in their hearts. Scared as hell of struggling for every breath as my condition progresses. Scared that a cure or viable treatment won’t hapen in my lifetime.

Resentment, because anger and fear create it. I accept my condition but I resent it. I resent the physical limitations even though my mind is in tact. I want to do but simply can’t command my body to do so. I resent becoming a burden. I resent that my family resents me, well not me but my ALS.

Obstinacy, why this? Because I have learned that ALS has caused my stubbornness to surface. And I will sure as hell not let ALS dictate our lives, influence yes, but not dictate! I will try every therapy availed to me to kick ALS’s Ass.

Yeah we pALS may come across as hyper-resilient, but as you can see theres a fire fueled by so many internal factors. Factors that create the outward appearance that we are unstoppable. Just know and understand that although our outward affect is strength we still need You and your support, we draw courage from it.

Stay strong my friends…

The Juan and Only

Forgive me as I take a deep dive for a moment. You see over time we continue to lose pALS, most we don’t personally know other than through social media. Either way it is painful. ALS is just so relentless I detest it. These are good people they, no one, deserves this.

Everyday I read a post on one forum or another …
“My pALS passed away”
“My pALS got their wings today/last night etc.”
This alone brings to life to the statement “every 90 min someone is diagnosed or passes away from ALS”. This just sucks!

Since being diagnosed I have lost track of how many of the notifications I have seen. It, in essence, reminds me of my own mortality. I wont lie it scares the shit out of me but I cant just cower away I wont.

I am not the only one going through this, this scenario is playing out around the nation and the world. ALS to me and many others is not rare, its just not the “cause-celeb” that other conditions are.

Everyday there is a cacophony of voices in my head…
“Why me? Why now? What’s next?
Who’s next? What will my family do? Will they find a treatment or a cure? Come on hands, move. Legs don’t fail me. Im so tired. I hate being taken care of. I’m blessed to have help. I cant do anything. I can still do some things.”

There’s allot of internal dialogue, there’s allot of time for it, sadly. Some days the conversations are cordial others not so much.

No one deserves to live with ALS. Many do so with outward grace and strength. We also know there is an equally dark side to living while dying.

There are so many working to erase ALS, I am grateful, this alone gives me hope. However my family and friends fill me with life.

Thanks for letting me vent.

The Juan but not the only

Oh what a “detour” life has taken… with ALS.

Riding into my infusion a while ago we were on the highway I was looking off to the side, access roads and Beyond. And I realized that the majority of us are speeding along always rushing from one life event to another. Not noticing the community around us and all the potential experiences, to include all the lives around us. ALS, metaphorically speaking, is like a hit and run. You won’t know the extent of the damage until you take a deeper dive.

What this hit and run in fact forces you to do is look for alternative routs to your future. It changes your itinerary drastically and forces you to go places you never imagined you would, destinations such as:

*ALS Central Station, with destinations to slow progression, rapid progression, bulbar onset, peripheral onset and many more.
*The small town of Sleepless at Nite.
*Clinical Trialsville
*Of course the suburbs of alienation, guilt and resentment.
There are so many destinations you never thought you would visit. Lots of bumps on the way also…

Of course there are fun and memorable detours also, and you meet some amazing folks on the way.

Try like hell to get back on course, however one must resign themselve to enjoy the ride as best they can…

TJ&O

Itch
ALS Torment

Sitting here contemplating life, or whatever is on my mind, then it begins. A slightly discernible sensation, a tingle, just on the boundaries of your sensory perception. There it is again, more noticeable this time, on your arm, scalp or back. It doesn’t matter the location, it fills your heart with anxiety inducing dread. It’s an itch!

Your heart races, only a fraction slower than your mind, scenarios coursing through your synapses. Then the realization crashes down on you… there’s no one near you to help! Without the use of your hands, you can only anticipate the itch as it crescendos to a point that drowns out the world.

All that is left to do is ride the wave, breath and transport your mind elsewhere. Hoping the itch subsides quickly, relinquishing it’s grip on you. It begins to subside, you take a deep breath awaiting the sweet release from this tormentor. Suddenly you notice a familiar sensation elsewhere…

Nooooo, another itch!

TJ&O

CAREGIVER
A Blessing

ALS has weakened my limbs, stolen my ability to stand on my own.

With you at my side I stand, I stand tall.

ALS has taken my ability to speak, stolen my voice.

You lend me your voice and allow me to be heard, my needs to be met and my thoughts given life.

I require assistance with all my needs, no longer self sufficient. Your hands not only sustain my daily needs, they nourish my body and soul.

Your care is more to me than mere help or aid, it is my connection to my life, my world.

To each one of us as patients, YOU are OUR BLESSING.

TJ&O