(THE FOLLOWING ARE POSTS FROM FACEBOOK DURING THE MONTH OF MAY 2017)
Okay Facebook friends, family and community, it’s ALS Awareness Month. Some of you may recall that last year after being newly diagnosed with ALS I decided to post daily about the condition in May. Well here we are a year later and I still have my voice. So without further ado, I will keep posting every day about this condition.
ALS Awareness Month Post #1: What is ALS?? ALS is considered an MND or muscular neurodegenerative condition.
It affects approximately 30,000 individuals in the United States. Every 90 minutes someone is diagnosed or passes from ALS and its complications. The condition can begin in many ways and affect different parts of the body and the Brain making it extremely difficult to diagnose. This is the reason why it has a very aggressive prognosis, many patients don’t live long after diagnosis because they have been living with a condition undiagnosed.
Symptoms can begin with tripping over your own feet, weakness in extremities, loss of muscle tone in the extremities and often changes in speech patterns. ALS mimics many other conditions and vice versa. Making it extremely difficult is the fact that every patient can manifest different both with onset and progression.
This condition was marginally supported for many years due to the fact that it does not have an overwhelming population affected. Thus making it not financially profitable to research and pharmaceutical corporations. The majority of funding was increased over the years due to the ice bucket challenge phenomenon. Additionally, the majority of research funding has come from private individuals and independent nonprofits focused on curing ALS. The ALS Association is the largest non-profit organization focused on three areas; advocacy, clinical care & Research and direct patient support.
Over the month of May, I will follow each day with a post pertaining to ALS and it challenges. I will also ask fellow pALS & cALS to submit their own post to share.
The “Juan” and Only
ALS Awareness Month Post #2: This website was created by Dr. Bedlack to provide a resource where one can scrutinize research and information. This is necessary due to the fact that there is a lot of information out there and a large amount is unfounded and unscientific. So as a citizen and a patient you have to be your own advocate and decide what you’re willing to try. Dr. Bedlack is a leading researcher in the area of ALS and MND’s, he travels the world advocating for research and treatments collaborating with many organizations in the hopes of finding viable treatments and hopefully a cure.
As I mentioned before there’s a lot of information out there. It can be overwhelming but if you’re interested in educating yourself this is a good site to weed through relevant and irrelevant information. This is very important for patients, caregivers, and family members.
ALS Awareness Month Post #3: Men are not supposed to cry right…? Well everybody cries at one point or another for some reason or another. But what do you do when your brain can no longer control when and where you cry when and where you laugh. That’s exactly what happens to some ALS patients who have bulbar onset. What is bulbar onset? Also known as PBA or Pseudobulbar Affect.ALS Awareness Month Post #3: Men are not supposed to cry right…? Well everybody cries at one point or another for some reason or another. But what do you do when your brain can no longer control when and where you cry when and where you laugh. That’s exactly what happens to some ALS patients who have bulbar onset. What is bulbar onset? Also known as PBA or Pseudobulbar Affect.
PBA is the condition that occurs in many with traumatic brain injuries and in individuals with neurodegenerative conditions such as ALS. Not all ALS patients develop PBA but most. For many individuals, it is the first symptom noticed.
Imagine yourself sitting comfortably watching television or just reading a book and then suddenly breaking down. I’m not talking a little quiver at the corner of your lip a tear or two. I’m talking about a full-blown breakdown, sobbing uncontrollably not being able to stop. Nothing triggered it nothing brought it on it just happens out of the blue. Imagine also being engaged in a serious conversation and all of a sudden getting the urge to laugh out loud or actually doing it. This is very disconcerting due to the fact that it typically happens at very inappropriate times. Add to this a dark sense of humor and it makes for interesting times.
This is just another aspect of ALS and its effect on the body. As I mentioned before PBA is not unique to ALS however it is just another way that this disease tortures the body and soul.
The “Juan” and Only
ALS Awareness Month post #4: Bruised Pride, modesty, surrender… terms that every ALS patient has to accept during the course of the disease.
Bruised Pride… because slowly your own body denies you the ability to do simple things for yourself. You have to set your pride aside and come to terms with needing assistance with everything. There are many conditions that require total and complete Care many are due to unfortunate accidents some are due too poor choices in life. However ALS and many other MND conditions are simply one’s own body attacking itself. As if the body one day wakes up and says, f*** you I’m done! No more Independence for you. Time for you to become a lump…
Modesty… this is another word you have to come to terms with because you have to set it aside. It doesn’t matter how much of an introvert how modest you are or how much of an exhibitionist your modesty is out the window. It doesn’t matter how you feel about your personal appearance you have to accept the fact that your arms hands and legs won’t allow you to care for yourself. If you don’t want to stink to high heaven someone needs to wipe your ass when you use the toilet. Someone has to shower you and eventually they will have to brush your teeth for you feed you and move you from bed to wheelchair Etc… at this point it doesn’t matter what it’s exposed what matters is maintaining healthy hygiene to avoid medical complications.
Surrender… this is one of the most important aspects should terminal condition. I’m not talking about surrendering to the condition and giving up on life. This has to do with surrendering yourself to others and accepting their love and support. If you don’t, and there are those that don’t, because they allow their pride to get in the way, you will live a miserable existence. Surrendering yourself to a higher power or your faith is a completely different post I will save that for another day.
If you are suffering with a terminal illness do not take the journey alone, do not push your loved ones away. Put your pride & modesty aside and surrender to the love and support that surrounds you.
Peace be with you,
The “Juan” and Only
|ALS Awareness Month POST #5: ALS makes you adjust a lot of things in your life such as; preparation time when leaving the house, adding assistive devices for everyday activities and of course the most intrusive… all your future plans have to be modified, changed or abandoned altogether.
For each ALS patient things are different specifically where you are in your condition, still mobile, breathing on your own or not. the following applies to me at the moment.
Preparing to leave the house requires choosing to wear an adult diaper or not, this is dependent on the length of the outing. The longer the outing the greater the necessity to be prepared for delays in getting to a bathroom. I also have to bring snacks, snacks, straws and Sani wipes. For those of you that think I might be over sharing, please be aware that this is my reality and that of many other patients with any given terminal condition that takes away your Mobility. And of course, all these preparations are followed by getting into my power chair and loading me into the van to get going. If you think about it I am reliving my infancy, my power chair is just an advanced, highly technical car seat, LOL.
Assistive devices: ( for this one I will simply list them)
Power wheelchair, manual wheelchair, Walker/rolader, shower chair ( in the future a roll-in shower wheelchair) toilet rails, bidet, straws, special utensils, an eye-gazing device in order to communicate in the future when I can no longer speak. Oh, but there’s more… a special rail on the bed so that I can get myself up, braces to walk in so my toes don’t drop and trip me, they also help me from falling backward if I lose my balance. I also have boots that I sleep in in order to keep my toes from pointing while I sleep and causing cramps, which happens regardless of the boots pretty much nightly. I also have a recliner that lifts to make it easier to get up. “That’s all I got to say about that”.
Things I will need in the future, and I hope the future is far away. A lift to move me out of the band, a hospital bed, a feeding tube, a vest to help me cough. A BiPAP to help me breathe without exhausting my diaphragm, potentially a ventilator if and when I decide to have a tracheotomy. Environmental controls on my wheelchair so that I can control thermostats, Electronics, automatic doors and lights. I’m sure there are more but that’s all I can think of at this time.
Our future as a family: Meg and I had planned on enjoying our retirement by traveling and spending time with family. Buying sporty cars, spoiling ourselves etc… and of course spending the remainder of Our Lives just enjoying our love for each other. All of these plans or out the window, but not entirely, I am still able to travel we will continue to do so. Ultimately I am still here and we can continue making memories and making plans, albeit a little bit more planning and patience are required.
I am blessed to be a veteran and have resources for my quality of life and health. Imagine those without adequate resources, this is why I share and advocate. This disease is financially devastating so please donate to the ALS Association when an opportunity arises.
Live, Learn, Share…
All my love
The “Juan” and only
ALS Awareness Month post #7: With so much discussion in the nation surrounding Healthcare and it’s future many if not all patients with terminal conditions are already dealing with the hell of Health Care coverage. I find it very difficult to accept that in one of the wealthiest nations in the world Healthcare and the right to a good quality of life is still so untenable. If you want a glimpse into the cost of at least one terminal condition please read the attached abstract. Once again I add the disclaimer that every ALS patient progresses individually and is diagnosed not according to a template but through the rule-out process of eliminating what it is not, resulting in the diagnosis of what it is. Healthcare insurance is daunting as is Medicare and Medicaid. The rules change with every political party that has the leverage to change those rules. Nothing is constant in Healthcare in the US except change, confusion, and deception. Even our elected officials are too ignorant to understand what they actually create and defer to their aids to digest the volumes of excrement contained in the policies. And so the trend continues with every Healthcare policy there are Millions that are left on the sidelines to wonder whether they have to choose between Healthcare and groceries, or healthcare or a home. Please pray for those in need and support NGO’s that fill the gap of every misstep taken by our elected leaders.
ALS Awareness Month post #8: Communication, isolation, and solitude.
In today’s world where communication is not just necessary to exist it is now a lifestyle with respect to social media. You are not current with the times if you do not communicate via social media, so say the youth of today… LOL. Communication allows us as humans to convey not just messages but emotions, thoughts, beliefs and so much more. Every person’s voice is unique as unique as their personality. As an ALS patient when you receive the diagnosis you know without a doubt that at a certain point of your condition you will lose your ability to speak. This can be, and is a point of great concern, one that can bring the onset of severe depression, knowing you will lose the ability to communicate with your environment.
This, in turn, can create severe isolation especially when you reach the point when you are trapped in your body unable to move, speak, eat and breathe independently. Many ALS patients have expressed being trapped in their own body. Without assistive technology and a caring Support Network, isolation can ensue. This is one aspect that can truly devastate any human.
Devices that can keep an ALS patient connected to their loved ones and their environment are invaluable. However, they can be Out Of Reach for many due to the complicated network of healthcare policies. Although there are many individuals and organizations developing more affordable devices the mainstream devices continue to be very expensive due to the complex software and attachments required. Organizations such as the Gleason Foundation help MND patients acquire communication devices to help make them feel alive and connected. This is by no means an endorsement of any one product as there is a variety on the market, and many more being developed. I currently have a device that I practice with, as advised by many patients so I can be proficient when the time comes.
I am personally very pragmatic about my condition and have accepted all that comes with ALS. But I will not sit idle on the sidelines as life passes by. As long as I have any ability to share my journey I will continue to do so. Primarily to advocate and continue the search for a cure.
Below is a short video of a fellow ALS Warrior demonstrating an eye gaze device. If you have an opportunity to share it with others please do so, it’s a good message on how technology can assist with inclusivity of those with communication challenges. If you would like a personal demonstration for a group just contact me and I would be more than glad to do so.
(more to come)