Jason’s ALS blog

A lot of people have asked us for an update on Jason’s blog, sent us e-mails, leaving voicemails or texting Jason, asking him how he/we are doing and in most cases we just can’t answer keep  up with the correspondences. For Jason writing on the computer, talking via Skype or using most other ways of communication have become so difficult and tiresome that most times he just simply does not have the endurance or energy to respond. And in my case I am simply too overwhelmed as it is to dedicate the necessary time to answer the many inquiries that Jason gets.

 So a good friend of ours, Megan Morris, has volunteered to be the voice of our family. If someone wants to get an update on Jason’s condition, has questions regarding our family or just wants to pass on a message to Jason or my family (and wants an answer), that person can e-mail or call Megan and she will be our voice and write/call back. Megan gets weekly updates from us and if something out of the norm happens i.e. Jason getting sick again) she will be able to provideupdates for everyone.

 Megan’s info is:

Telephone:(206) 422 0796

e-mail: megan.morris@gmail.com

Hey all,

My mom gave me crap yesterday for painting “too rosy of a picture” regarding my ALS progression..So here are a few charts of my overall treatments and symptoms that I’ve been tracking on http://www.patientslikeme.com.

First off FRS and FVC:

Functional Rating Scale (FRS) Score helps you keep track of your overall condition by measuring symptoms in all parts of your body: head, chest, arms, and legs. You can ask your doctor to help determine your FRS score or answer some simple questions about the impact of ALS on your day-to-day life

(FVC) Score measures your lung strength and is an important indicator of overall progress. This is the important one because it measures the strength of the diaphragm and my ability to exhale. In other words as this goes down I’m closer to death. And Im getting retested on 1/20..

Here are my current symptoms:

Christmas Eve Ulrike and I were sitting by the fire quietly talking.  Naturally we gravitated to one of our frequently discussed topics. How lucky, blessed, fortunate, and thankful we are for the support we’ve received from the community at large. We started reviewing the year and the people who’re threaded into our lives, their contributions, their efforts and the continuous messages of support that we receive every day. Strangely, we also felt (and feel) a certain level of completion with the recent purchase of the van. We realized that we’re near the endgame and we’re finally equipped and prepared for the rest of my progression. By now, as usual, the tears rolled as quietness filled the room…Anyways…

Besides sharing our emotional journey we also wanted to add a level of transparency so you know how your contributions were used and how your help directly shaped our lives. Here’s a very short list:

• Wheelchair Accessible Mini Van (Braun Entervan)
• Lifts\elevators:  1 8ft and 1 12ft
• Motorized bed: Basically a fancy hospital bed
• Lift chair: A lazy boy that helps me stand and transfer
• Endless hours of volunteer work that led to our house being wheelchair accessible (an estimated 800 hours of people’s personal time was donated)
• Widening door frames, widening hallways, finish work
• Lift installation and subfloor reinforcements
• Major bathroom remodel that meets ADA standards (grip bars, heightened toilet, Toto wash let, no lip shower, wet room conversion, raised sink, special ADA faucets, and all the other stuff you need to complete a bathroom)

The key point to emphasize is that besides the structural work to our home everything will be donated to the ALS association once it will no longer be needed (i.e I croak). Your donations will carry forward to help others in need, other families just like ours who were struck by this disease out of nowhere. Again, thank you for the support. It will never be forgotten.

 Jason and Ulrike

Posting the same note that was published today on Facebook.

Hey all,
Been battling demons for the past few months…I’ll write about those on the blog…Your emails and comments have been great and have really helped. Sorry for not replying…Typing is hard work. If you want to know how it feels try tieing five pound weights to the back of your hands and then bang out 100 words…You’ll get the idea. The good news is that Im getting my eyegaze system up and running so that should help me connect with the world at large…

So whats the status of the ALS? Not good news. My progression is maintaining maximum warp and Im losing functionaity…My legs are shot now and now need the power chair. I can still stand and transition but walking unassisted is out of the question. Im getting a feeding tube in a few weeks which should slow down the weight loss and will help me resume my daily glasses of Makers. Anyways, you get the idea…ALS sucks

What have I been doing? right now Im currently enjoying a little Social D radio on Pandora (hey Matt), choking down my second cup of vanilla creamed joe and ordering a trike for Jonas at Amazon for xmas. What else? Well, here’s the abriged list:

Lots of time with family
Got knocked out in September and ended up with a head gash in the ER. I think this fall deducted at least 15 IQ points. Something I can’t spare..
Finished Halo:ODST
Played Left for Dead
Writing to Jonas; Not as much as I should
Shopping for a van
Watching too much TV
Physical therapy
One or two naps per day
Too much time on the bidet..I love that thing
Went to the UW v Arizona game courtesy of Sark and had an awesome time. Bendik kept me in stitches and Stephanie was an amazing hostess. So good to catch up with old friends.
Went to the Seahawk\Jaguars game courtesy of my good buddy Rehan. Cant really comment on the game; was staring at the Seagals the whole time. I know, still a perv.
Turkey day was good. I almost died by choking on a deviled egg but Ulrike gave me the heimlich. That thing shot out with force. Can’t blame that on ALS.
Hung out with John Romero last saturday. Had an awesome time catching up while watching UW destroy Cal.
Now, just getting ready for xmas

Emotionally, Im on the upswing now (Thanks to John) and I’m gonna try and make regular postings from here on out….This post took 2.5 hours…Need to nap

Have you ever had to do something but ignored it? Instead you just procrastinated or invented reasons why you shouldn’t do it? Yeah, this was one of those things for me. In this case, I shouldn’t feel so surprised that it led to feelings of disappointment. I should’ve known better. Over the years I’ve learned to trust my gut but this time I doubted it and decided to follow the advice that most folks dish out when they hear that I’m down in the dumps:

“Have you been to the support groups?”
“You haven’t been yet? Oh, you should go”
“He has ALS? Oh, he should go to a support group.”
“Has he talked to any other folks with ALS? He should get their advice”

This wears on an individual and in time both Ulrike and I started to believe that we were missing out on something good; something helpful. After all, this advice is woven into most conversations about our ALS trials. Click to continue »

Alrighty folks…here it goes…

With regard to the ALS the past 3 months have “sucked”. No other way to put it. Life normalized for a few weeks in May but the ALS really started making itself known in June and decided to deliver a “whoop ass” to both my body and my emotions throughout July. Today, the war rages on and I’m fighting, more like enduring, on 4 fronts of progression.

Front 1: Walking\Balance
Spasticity (hardness) has increased in my quads\hams and has impacted my mobility. Unfortunately, a walker is needed outside of the house and I’ve lost the ability to drive. My legs just can’t move that fast. Some folks have suggested that I move to the powerchair but I’m stubborn and won’t make that move. I have personal reservations (pride) on committing to this step and don’t want to go down that slippery slope. At least not yet. When I was healthy I always had a spring in my step but today my gait is stiff and I’m walking from my hips if that makes any sense. I struggle to get the balls of my feet off of the ground. Mentally, I have to focus upon each step which you can imagine is difficult to do. So I fall about every other day. Some minor and some that are just plain nasty. Honestly there are two falls from last week that I’m lucky to have survived. It makes me wonder how hard you have to hit your head to lose consciousness or worse yet, die. In my case, I fell with all my weight on my head. Don’t get me wrong, my bell was rung. I had a good ole fashioned concussion. I saw stars that I haven’t seen since my junior year when Scott Werner impaled me into the ground for the 3rd time doing db sweeping drills. I guess I’m lucky. The challenge here is not that I’m slowing down; I’ve accepted that part. It’s the fact that I still have hope that this damn disease will plateau but as time moves on a little bit more of my hope, and my life is lost.

Front 2: Hands\Arms
My arms\hands have atrophied, lost strength, while my pointer fingers have started the curling process. Everything is impacted: dressing, grooming, eating and all of the other things that we need our hands for have become a challenge. Even typing this blog is rough. Really rough. I can go on and on with specifics but you get the idea. You can imagine the loss of function in your hands. It would suck. It does suck.

Front 3: Speech
Speech tempo, volume, and pronunciations are a day by day thing. Some days, I sound bad, my new normal. And other days, when I’m tired, my speech is inaudible. But on this front I feel fortunate and that is solely due to our friend Megan Morris at the UW Medical Center. She quickly worked me through the system and now I have the phi slamma jamma speech device with the built in eye gaze system that very few people can afford. Again, I’m very lucky to have this and without her guidance I would’ve been lost. In time I will grow to depend on it as it becomes my life line to the world

Front 4: Emotional
The daily life\routine of my past is history. There is no upside to this condition and I have no grand words to share or silver linings to reveal. ALS kicks your ass and tests your limits each and every day. Every time I mentally adjust to a change I deteriorate and re-start the emotional battle. Each day I wake up and ask myself: “Is this going to be a good day or a bad day?” And by far, over the past few months, the bad days far out number the good days. I’ve wandered from the path. I’m running on fumes. Call it what you will…I’m tired… and I know it’s only going to become more and more difficult….I don’t know…I don’t know anymore where to find the strength, the courage, the motivation to endure; But, deep down I know I have to. I have no choice.

A special note:
To those who’ve called, texted, emailed, or facebooked I thank you for your efforts. I’m sorry for not getting back to you and sincerely ask you, again, for your enduring patience. It’s not personal to you. I know I’ve gone dark on communications but please realize I’ve been focusing all reserves on the basics of a day. The past 8 weeks have been challenging; the most personally challenging period of my life. Your communications have helped and were not in vain. Please keep’em coming. They help and usually result in a laugh or a smile. They, you, bring the much needed encouragement to keep moving forward; to endure, and know that I’m not alone.