So you have ALSWhat can you expect…(Part 2)

Let’s continue, shall we.
Now that you’ve had a moment to catch your breath and clear your search history on everything ALS, what’s next?

Several paths will present themselves: 1. Accessing an ALS Clinic (Center of Excellence), 2. If a veteran, accessing a VA ALS clinic and your benefits, 3. Pursuing alternative health care, independently or combined with traditional medicine, lastly 4. No treatments or therapies.

All of the above are choices that are deeply personal and must be respected. However, and I mean this sincerely, your choice requires consensus by your support network, a.k.a. family. Why, in case you are unaware, you will require total care and support, no one escapes this, regardless of rate of progression. The blunt reality of ALS is that none of us know how it will progress for each of us. There will be some who offer their insights as to onset, progression and a slew of other aspects regarding ALS. Tread carefully is the only thing I will say.

Once you choose though, depending on that choice, you can and will alter your approach as needed. Remain hopeful that therapies are imminent, remain open minded and keep your options open.

This brings me to the topic of clinical trials. In my humble opinion, trials are not designed well for us but they are evolving with pressure from our community. The reason to participate in trials, hope! Hope that the therapy meets our needs. I could give you a bunch of figures and science, let’s be honest none of that matters, all we want is a chance.

I will end part 2 with…
ALS has introduced itself to you and is becoming an important aspect in your life. But for a very small percentage, you are and will continue to be the same person. One major difference, your physical limitations require you to surrender to the love and support you’re surrounded by. If you are blessed to have such support. For there are many who either don’t or loose it entirely.

More to come,

The Juan and Only

So, you have ALS.What can you expect…(Part 1)

Initially: shock, dismay, numbness, fear, confusion, anger and a slew of many more emotions. You and your family will also experience information overload and I mean a Tsunami of information. This will be followed by questions, queries, exhaustive online searches and lists. Lists of questions, resources, leads, suggestions and websites.

Ok! Catch your breath, breath, exhale…breath…

Now that two days have passed, collect yourself, continue to breathe. Now what do you need to focus on? No really, ask yourself what is pressing at this very moment?

Safety? Have you experienced falls? What can help mitigate this?
Speech, swallowing, choking? Who can advise on this? Technology to consider? Interventions?
Long term care?
Benefits? Veteran y/n?
Work, job?
Living accomodations, accessibility?
In home care, aid?
In essence what do you need to address now versus what can wait for a bit?

What else to expect, stay tuned I will follow up with more. Remember it’s only been a few days I don’t want to overwhelm you.

I will share that you can expect this community to support you, virtually hug you and guide you. For we share this journey with you.

The Juan and Only

ALS Wheelchair Bubble’s

Moving through crowds, navigating a busy room, even in the serenity of your home, you feel alone when sitting in a wheelchair. I’m not talking about depression, although that is a very valid concern for many, especially during the holidays. No, I’m talking about the feeling of being in a bubble.

It’s hard to express, let’s call it “The ALS Wheelchair Bubble”. What is the wheelchair bubble, you ask?

This construct of my imagination, is an invisible barrier we, the wheelchair bound, experience both physically and mentally.

The physical:
Toe Crusher Bubble; the safe distance circumferentially to your wheelchair, whereby those around you and their, shins, knees and toes are safe. Victims quickly learn the value of this bubble.

The, “is it contagious bubble”; this bubble has become less hurtful due to Covid. Nevertheless, this bubble consists of the able body person having an irrational fear of “catching” the imaginary “wheelchair virus”. So they keep a safe distance, this bubble also creates the urge to speak loudly. So as to bridge the void.

Technophobia bubble; this one is rather straight forward. The perceived safe distance from technology. The powerchair, eyegaze and ventilator are devices that can elicit fear in the uninitiated. Although they would be coveted by a Steampunk aficionado.

The Mental
This is in essence the internal dialogue we have, this is where we meet ourselves. This bubble is self imposed, it’s our self image.

Perspective Bubble; our actual perspective has been modified to that of our chairs height. We now look up at our peers, eliciting feelings of inadequacy. “I am no longer who I used to be.” Which in many “physical” ways we are not. However, we are still the person(a) we have always been. With one exception, our self perception.

Self Preservation Bubble; the self imposed force field we create to keep from being hurt. This tends to manifest in an outward affect of: depression, anger, grumpiness, and general unapproachability. Which I suppose is the intended effect.

Alone in a Crowd Bubble; this one is due to our believing that there is no one that understands ALS unless they have ALS. That no one can truly know what we are going through. In a sense this is true, but it doesn’t mean others can’t empathize. This belief can and often does, make us feel alone in a crowd. Truth is, we are not. And we are not the only ones that experience this phenomenon.

So as we navigate through life in our wheelchair, remember bubbles aren’t just for kids. We often use bubbles to cope with life.

Have a bubbly day!

TJ&O

Holidays with ALS

What ever you celebrate during this season, one thing for certain, with ALS it’s just not the same.

I used to put the lights up, put together the tree, even decorate the house. Cook up a storm, help my wife wrap gifts past midnight. My one wrap job to her three, lol. But we shared the, even though she may argue with the split. I for one won’t argue that point.

It’s challenging to sit by and watch as the world fly’s by, whizzing past us. As if we are in slow motion and those around us are on fast forward. It seems like this, but truthfully it’s just the way our mind copes with living in a lame body.

Yes it hurts to be a witness rather than an active participant. However, being a witness is still being present. With ALS, being present is what we have left. This is the gift…time, moments, minutes, memories.

What ever you and your family celebrate during this season, I wish you love, peace and many more memorable moments.

From our family, Merry Christmas!

J Reyes

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