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So You Have ALS... Parts: 5, 6, 7

So you have ALS

What can you expect…

(Part 5)

Now that we sat for a spell, caught our breath and digested the mountain of information that is ALS. Let’s reflect on something that should be hitting right about now…Grief.

ALS, grieving and mourning our future.

Grieving when you experience a loss is a natural process of life. Especially when you lose a loved one. But what do you do when you lose the life you had planned on, the life you dreamt of spending with your loved ones? Your still very much alive it's just that you have to alter all of your future plans.

What do you do in this situation...? You mourn, you experience anger, denial, bargaining and everything else that comes along with it. Having experienced this personally with a diagnosis of ALS I can imagine that many if not all patients go through the same process. The moment Meg and I left the clinic after receiving the news our minds were abuzz with a whirlwind of questions. Meg being a planner, I'm sure was already wondering what plans we have to put in place to deal with this. These thoughts we're only superseded by the thought of having to break the news to our children and family.

After the news settled in we went about our lives starting to plan and think of changes we would have to consider. At the same time that I was diagnosed we were invited to attend a support group and the annual walk to defeat ALS. Our emotions were to raw to consider attending either. Eventually we worked up the courage to attend the support group. It turned out to be one of the best decisions since being diagnosed.

Meg and I reflected on the advice we received from other families and decided to talk and discuss the importance of a unified approach. So what has changed for us? For starters I had to retire permanently in order to arrange future benefits for Meg and our children. Meg has to consider early retirement to care for me. Barring any incredible discoveries in the treatment of ALS in the immediate future I also realized I may not see my children grow up into adults.

We are in the process of making memories such as destination vacations. So far we have been on two cruises and 9 years ago before my diagnosis we had an Incredible 2 weeks RV trip up to Mount Rushmore, Yellowstone, Colorado and New Mexico, it was amazing. I even went skydiving six months after diagnosis. Yes our life has changed inextricably and forever. But has it ended? Hell no!!

Let’s take a moment to focus on just the caregiver, shall we.

ALS is a very labor-intensive medical condition, what do I mean by this? Well simply put, it requires a lot of time and attention to the patient. This is wholly dependent on the severity of the pALS condition and how advanced it is. The more advanced the more minute by minute care that is needed. Of course the whole point of this is to sustain a decent quality of life for the patient.

Because of the intensity of the Care needed by the patient it is very common for the caregivers to become overwhelmed. Although grieving begins at diagnosis the focus on care by the caregiver can interrupt the natural course of this process. Coupled with the desire to not leave their loved one for any amount of time it can become untenable for this to continue unchecked. Most of the time it's because there is no one else to take their place.

Grieving in this instance becomes incremental; mourning the loss of function, speech, touch, independence and even friendships. Mourning the life you had planned for your self or each other.

Im tired, let’s take a break.

More to come…

So you have ALS

What can you expect…

(Part 6)


Last post we chatted about grief, let’s be honest with ourselves, ALS is a grief mill; it just churns out something to grieve about almost daily. Let me take your mind off grief for a moment.

But how, since it permeates my every thought?

Well, let me share the harsh reality of what you can expect as you progress. Don’t continue if you don’t want to know…

However your ALS started, limb, bulbar or both, slow or fast, you can expect the following:


Muscle atrophy, most noticeable in hands, shoulders and arms. Increased weakness to the point of failing, your limbs will cease to function. This will bring on bouts of anxiety, anger, frustration and lashing out. If left unaddressed this can lead to depression and beyond, which for some there is no return. This is just a fact, nothing about ALS is fair.

You will experience unimaginable fatigue; first with exertion then with the mundane, such as eating, talking, being dressed or of all things a BM, yes a BM. Every activity will take great effort and will eventually just not be possible. Oh yeah, I almost forgot, extreme temperatures will also effect you greatly.

Eating, breathing and speaking, all will be effected, if not already. Your options, should you wish to pursue them:

-Feeding tube

-NIV: None Invasive Ventilation aka BIPAP.

-Invasive Ventilation, tracheotomy

-Eyegaze: communication device that tracks eye movement and speaks your words for you.

--Letterboard: low tech communication board that uses a grid of the alphabet and eye movement.

Now I know that I’ve painted a rather bleak outlook with the future of your progression, I’m simply not sugar coating it. However, as with any flip of a coin, there are two sides! Ultimately it’s both luck and choice, both require active participation. All of these effects of ALS can be mitigated with adaptations to your care. Many choose to implement all, some or none of these interventions. All options are personal and must be respected, thus the importance of honest and uncomfortable discussions regarding end of life wishes. Sorry, took a dark turn again, I’m trying to turn this post around and end on a positive note…but damned if ALS just won’t let me!!

Oh well, I will post a positive image to make up for it.

More to come…

So you have ALS

What can you expect…

(Part 7)

As we have meandered through the ALS forest on this hike we haven’t shied away from the difficult trails, ALS won’t let us. We simply have to forge ahead and follow the path chosen for us. So what to do when we physically can’t take one more step? When our legs and feet no longer do our bidding.

Technology is the answer to this new challenge of ours, technology in the form of a wheelchair or powerchair. If you still have functioning hands you will appreciate the independence this provides. Let’s discuss some important considerations for a powerchair.

As one of the biggest investments for an ALS patient you must consider future needs for yourself and your care team. If you receive a donated chair, which many do, then you really don’t have the opportunity to ask for options.

Powerchair considerations:

*this is not an endorsement nor a comprehensive list*

1. A chair should be fitted by the OT or vendor. This consult will (should) take into account current and future needs.

2. Brand- pertinent only if your OT has various vendors to offer you. Two principal brands: Permibile and Quantum. There are too many foldable travel chair brands to list here, Google is your friend in this case.

3. Drive- this is indicative of the position of the wheel that actually propells the chair. The most maneuverability is offered by center drive, drive wheel in the middle of the chair.

4. Lights- only if you are active and venture out after hours, so you can see where you’re going.

5. Eye Level- ability to raise the chair to standing height.

6. Attendant controls- joystick on the back of chair allowing caregiver to drive.

7. The last thing I will mention is the seat cushion. There are many types, over long term a seat made with inflatable (adjustable) bladders have proven to be preferred by pALS.

That should suffice for now. One important aspect about using a powerchair, you will damage your home, furniture and your family/friends, or at least their shins and toes.

Now that we are on a roll…he, he, more to come…

The Juan and Only


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