Normalcy…

What is normal, what is normalcy? This is different for every single individual, family or network of friends. Having travelled abroad to many countries both on vacation and in the service of my country I have grown to appreciate what normal is.

Normal is not what you think it is, there is no normal there is just what you perceive is normal and what you are comfortable with. I worked with a surgeon once who stated that “there is no such thing as common sense, if it did exist it would be very common”. He would prefer to say “I wish people would simply exercise good sense”. So you see there is no such thing as normal. Culture, customs, geography and the overall environment determine what your perception of normal is. However normalcy is something that every ALS patient and their support system strives to achieve.

Normalcy of course for an ALS patient means trying to maintain a semblance of your previous life as much as possible. For our family it includes family dinners at the dinner table and table talk. At our dinner table conversation of every topic and subject take place, nothing’s off the table literally. We practice this because our kids are so engaged with their electronic devices that we pull them away from them by engaging in real conversations. Yes sometimes conversations can take a pretty strange twist and sometimes lead to subjects that some may deem controversial. But you see the world is controversial and we want our children to be able to interpret it as best they can.

Normalcy also includes making vacation plans. As a family unit for the time being and in the future some of those vacations may not include me. This is for two reasons, one my wife and kids will need a break from me, and I will need a break from them. This is healthy and very much necessary. Normalcy also includes going to our children’s events at school and extracurricular activities. Normalcy includes getting picked up by family and friends for a quick bite or a few cocktails. Normalcy is also date nights with Meg, to include moments of intimacy, however these have changed considerably.

Normal is me yelling at my kids for not doing as they are supposed to. Me hugging and doting on my kids when they do what they are supposed to.

So you see your normal is different from my normal in many ways yet similar in many more. Life does not stop when given a terminal diagnosis it simply Alters your path and requires a little adjustment to what normal is.

So grab on to the safety rail keep all hands and feet inside the cart and enjoy the ride. As a friend of mine liked to say “Attack Life Smiling”!(shout out JT)

Stay normal my friends… whatever color shape or form your normal is.

TJ&O

Don’t be afraid of me…

You see, I am now making strange sounds due to my ALS. When I yawn my whole body tenses up. My yawn can sound like a Wookiee distress call and my body lookes like I’ve been infected by a zombie virus. Trust me I’m not calling in a zombie hoard to attack you, its just my ALS.

When I eat, I sound like I am excessively savoring each morsel. Truth be told, I am, however the sounds are due to the effort it’s taking me to chew and not choke. You see my soft Palette and my throat are loosing functionality. This has lead to getting a PEG, a feeding tube. This is all normal for ALS… well normal is relative. So far I am still able to eat by employing safe eating techniques and morsel size.

When watching something emotionally charged my PBA kicks in and I will react. I can let out a whimper or groan, this sounds like the waterworks are about to start. Or I can laugh or snicker. I can not controll my reaction, or the intensity. So my family sits at the ready with tissues for my issues.

So don’t be afraid of me, I’m still in here. I’ve only been given an upgrade of new sound effects, don’t be jelly. We cant all be special…

There are a slew of other sounds but those are better left for primetime or around the campfire, LOL.

TJ&O

Staying positive with ALS, how is it possible?

Well it ain’t easy, yes it is possible but it takes work. There is no secret or blueprint on how to do it. Just as each of us pALS develop and progress differently, we each have to design and reformulate what drives us and what we choose to focus on emotionally.

Here are a few observations, these are my beliefs, so don’t flood me with negative comments.

Come to terms with it, dont confuse this with giving up. Whatever it takes and however long it takes. I believe in God, this is MY belief. I have never blamed my God for the diagnosis. God did not cause this, my body did. I hold on to my faith and believe I have lived a good and very blessed life. I am thankful for the life I have been gifted.

Surrender to the love, assistance and support of your loved ones. This is imperative, to take a load off your shoulders, respective to how will you physically cope. My heart goes out to those challenged by lacking or losing their support people. I have no answer for this, but it is a reality for many.

Find your new passion, as pALS, ALS forces us to plot a new course to our lives, dreams and passions. It is also important to allow yourself to mourne the life you had designed as your future; plans, goals and long term desires. This of course is a sliding scale as ones abilities shift and ALS progresses. For some it is so rapid all they can do is just choose to be present in the moment. In the end all we have are moments and memories.

For those that are parents, let your kids in. Let them be a part of your care, of course age appropriate. Let them receive your love and vice versa. Let them steal your wheelchair and assemble the X-Men, dont ask… just let them in. Kids are more resilient than we think.

Be an advocate, most importantly for yourself. Life is difficult, even more so with a terminal condition, healthcare is a nightmare to navigate. If possible advocate for your codition and for others, its fulfilling.

Lastly, chose to not let ALS be at the center of your existence, it wasn’t before. ALS is only one part of who you are. Dont get me wrong, it is not easy at all. Sometimes you have to allow yourself moments lo let your vulnerability through. You cant and should not be expected to be upbeat constantly. That would be exhausting, and I would want to know what you are on??

Just a few of my observations…
-Believe in something, have faith

-Surrender to love

-Define (redefine) your passion

-Fight, fight for yourself and others

-Don’t deny your humanity, vulnerability and emotions

Wishing you special and memorable moments…

TJ&O

Be patient with me…

My ALS has slowed me down considerably, I’m trying hard to keep up with you, but it’s not easy for me. My limbs don’t work as well anymore, while in my wheelchair it takes a moment to get my hand on the joystick, I’m coming. Yes I can still stand and transfer on my own, but be patient it takes me some effort, be patient while I exert what little independence I still have.

Please be patient as I speak, I know it’s hard to understand me sometimes. I heard you I’m replying to you, but be patient as I use my eyegaze to respond. Please don’t speak for me, give me a moment to answer, my tongue just takes a moment to get going.

I’m not ready for another bite, my tongue has trouble moving the food in my mouth. Ok, I’m ready for another bite, thanks for being patient with me.

I know it’s hard to see me like this but know I appreciate your love, support and most of all your patience. I will try to be patient with you also, but know that I may not be from time to time.