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

One comment

  1. Joanna · January 1, 2022

    This is a wonderful piece! Thank you so much. As a non-caregiving family member, I struggle with feeling I am “taxing” my loved one by my visits. This is the very system by which main caregivers feel isolated and worn out, and extended family members are afraid to bother y’all.

    My experience shows that being loved clumsily and sloppily beats cold efficiency any day. Bless you and your family in this beautiful tribute to “Live Until You Die!” You are a valuable part of my personal insight into ALS. I have learned I can reach out to visit tactfully, or offer to do a specific THING(like the catbox!) each time I visit.

    Better to BE there than not. Full stop. Thanks for being here to help in the overwhelm.


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s