So you want to know what ALS is like…? Hmmm, let me see if can help you understand.
Imagine every major condition that effects the nervous system, brain or both. Now take the worst aspect of those conditions, put them all together in one body. Add those symptoms, effects or limitations in any sequence or order for everyone affected. Now sprinkle this conglomeration of progression and symptomology with round the clock care, stress, anxiety and depression and you have, oh wait! One more thing. You are aware of everything, everything. But unable to speak, breath or eat without help or medical equipment. Yeah that’s what ALS is like, for the person living with ALS. Now what is it like for the family, friends and caregivers? I don’t know, let’s ask them…
Here’s the deal, when you sit all day in a wheelchair the quality of the seat cushion is crucial. Not just for comfort, obviously, but to prevent pressure sores. This is the true and more serious reason of the two.
The standard, that I’m aware of is the brand Roho. OMG, what a difference, my toosh is happy. My original cushion sprang a leak and the replacement arrived today.
Here’s the reason it’s so comfy; it is comprised of 2″x2″ individual air bladders and is adjustable. It’s also custom fitted to the seat of the wheelchair. It can accommodate: mini-toosh, average toosh and above average toosh.
Yes it’s comfortable, however it is medically necessary, I can’t risk cracking my ass.
We all have a part in the fight to end ALS! Each one of you pALS & cALS is my Battle Buddy on the Field of Battle!
ALS and feelings of inadequacy…
Having physical functions taken from you can be emotionally devastating. This is only compounded by feelings of inadequacy.
We know its not our fault, but these feelings emerge as we are able to do less and less for ourselves. Many retreat into just existing, more or less because it takes everything to just exist. There are some who take on the mantle of ALS Champions, boundles energy and drive. Most of us fall in between the two above. Doing what we can for ourselves and others, perhaps locally, perhaps beyond.
However the inadequate feelings pop up, most often, respective our families. Its very, very hard to sit by and not be physically engaged. Thank you for saying, “but your here, thats what matters”, it is important, but it’s still painful.
Most of us power through it most days. Our minds are in tact, so we think, collaborate and initiate movements in an effort to be more than a fading human.
I try to do my part but I do get overwhelmed. I am in awe of patients and caregivers that have the capacity to move in the stratosphere of advocacy. Thank you for your efforts to affect positive change for all suffering ALS.
Its ok to focus on yourself and your family. This is “the” most important factor. It’s also normal to feel inadequate, just know that what really matters is that you are present with and for your loved ones.
6 years (October 14) 2180 days He said, “you have ALS “ I heard, “your dying”
Not a day goes by that I don’t reflect on this exchange. 2-5 years is the prognosis, quite a sobering thought, right? So am I now on borrowed time, aren’t we all. ALS continues to take from me; hands are useless, voice is faltering, legs can still support me and my breathing is adequate.
ALS has drastically altered the course of our family’s life, adapt to live. Most importantly requiring us to open our hearts and minds to others. Others in the sense of those also afflicted and also to support and assistance offered and given. Our paths have intersected with others whose life inspires us; strength and resilience that is both infectious and driven. Driven to create a world without ALS.
We have also experienced profound los, for this disease inextricably intertwines our life to others and their loved ones. Extending our family well beyond blood, impacting our very souls.
So today I don’t observe the anniversary of receiving a fatal diagnosis. But instead the day I was bluntly told by the universe, live you fool, the choice is yours. Yes it is extremely painful and difficult to lose all physical abilities, to be left wit only your mind and eyes to engage with the world. Voiceless, breathless, motionless contemplating the world as it continues to move as always.
To be honest it’s just another day, but that’s the beauty of it, I’m good with just another day.
You mention Stephen Hawking, fans of The Big Bang Theory know.
You ask avid football fans who Steve Gleason is, they know.
You mention The Ice Bucket Challenge, a high percentage of chilled participants had no idea why they were actually doing it.
You see, most people suffering from ALS grow isolated; some by choice, most because its hard for others to pause and meet your new pace of life. It takes a great deal of effort and energy to actually get out there and advocate as a patient. Not to mention the effort by family and caregivers to help a patient be relevant to the cause.
So if you run across or meet an ALS patient know this; the sheer will to live, actually live with ALS, is a feat. Take a moment and learn what ALS is. How it takes everything from us. Most importantly learn that we are alive, present and still contributing.
Do you know what ALS is? I do. If you have a moment I will tell you how I Live with it.
There are days when it feels like life is on an 8 second timer. You open your eyes, and just like the gate of a rodeo chute, life takes off. Bucking, twisting, turning, flying through the air. You have but one choice, find your rhythm and ride in unison with the beast.
Eventually it will buck you off, but not before it takes you on the ride of your life. Do you fight the thrashing or do you ride the twisting tornado? Do you adapt to the constant and sudden changes in direction?
8 seconds can and often feels like a lifetime. The success of your ride depends on your gear, your team, and your metaphorical grip on the flank strap. Most importantly your willingness to follow and respond to the beasts lead.
Caregivers of ALS patients do so much, often as the sole provider for their loved one. Very often due to the patient not wanting to allow anyone else to care for them. This makes it nearly impossible for the caregiver to get a break from the patient, causing burn out. Extended family need to understand they need to step in and help the patient realize that others will need to be allowed to help. It’s an uncomfortable conversation but very necessary.
Just to give you an idea of what it’s like. Imagine having a pot of water on the stove, but you can’t let it boil over, can’t let it dry up and you can’t turn it off. A life depends on the pot continually boiling. How and when do you rest?
Daily routine: Wake Get help out of bed (stretch) Enjoy a cup of coffee (with a straw) Watch morning news Breakfast Morning meds Shower (sometimes sponge bath) Flush feeding tube, clean tube wound Apply condom catheter Get dressed Check social media & emails Run errands go to appointments (pre-COVID now via telehealth) Have lunch Prep for dinner Wait for kids to get home (pre-COVID) Direct kids on chores and making dinner Dinner Relax (tv) Prep for bed (take meds, remove catheter)
All of this and I am not able to do any of it on my own. Every step requires someone to help me. I can’t get out of bed on my own, shower, eat, meds, bathroom, drive etc. Every person that functions as a caregiver has their patients needs, their personal needs and any other responsibilities that life brings. Burnout is very real for many caregivers and very dangerous.
Caregivers, unsung heroes and often unknowingly abused by their patient. I say unknowingly because the patient loves them but fears anyone else caring for them. Additionally the caregiver has an extremely difficult time letting anyone stepp in, they feel as though they are abandoning their loved one. It is truly a double edged sword that cuts to the soul. Sometimes it can not be resolved; fear, guilt, but most of all the love, can’t be set aside, not for a moment. Who can argue with this.
ALS is taking my body, one nerve at a time. It started with uncontrollable twitches. An EMG reflected a symphony of indistinguishable static to me, but to the neurologist… a familiar dirge. Since then it continues to take one muscle fiber after another due to motor neuron death causing atrophy. With this comes loss of limb function, strength and any semblance of dexterity.
As if to try and scare me ALS leans in and wispers in my ear “I’m going to take everything from you, even your voice and your last breath.”
Ha! I burst out laughing… are you serious! I have teenagers! ALS cowards back into the receses of my mind, for now.
What is ALS? It is a marathon that you run with Death as your pacer. No rest or water breaks mile after mile. One can only feed on hope and love until you cross the finish line.