Wednesday, January 29, 2014

My Back

My doctor thinks I likely herniated a disk in my lower back, on December 26th.

I've suffered a similar injury in a similar location  before, but a short round of steroids seemed to power me through the worst of it in a week.

No such luck this time.

A full month after I hurt my back I'm  still slightly delicate when standing or sitting.

My mind plays tricks on me, though. As I come out of the proverbial woods, I keep thinking i will hop back up when all is healed, only to crash to earth as the reality of ALS sinks back in.

Friday, January 17, 2014

Congressional Update from the ALSA

We are excited to let you know that last night, Congress passed legislation that included an additional $7.5 million for the ALS Research program at the Department of Defense and an additional $6.5 million for the National ALS Registry. The funding for the Registry is an 11% increase over last year! The legislation now heads to President Obama who is expected to sign it into law.

Thank you to everyone in the ALS community who reached out to their Members of Congress over the past year in support of these two important research programs. Your efforts continue to make a difference. The fact that Congress increased funding for the Registry in a year when cuts were the norm is a testament to the effectiveness of your advocacy.

Since the ALSRP was created in 2007 and funding for the Registry began in 2006, Congress now has appropriated a total of nearly $81 million for the two programs combined! This funding has enabled the ALSRP to support nearly 30 ALS drug development projects. Funding for the Registry has helped to identify ALS cases across the country and has advanced more than 25 research projects investigating potential causes of ALS and ALS incidence and prevalence.

Thank you for helping to advance the fight against ALS!!

Saturday, January 11, 2014


We had some interesting visitors to the house this week.

I pulled my back two weeks ago. The trip to the doctor resulted in a prescription to help my back, and a prescription for a home health aid.

We had a physical therapist visit. A visit from a the aid coordinator. And a visit from a guy that seemed to be coordinating with available social programs.

Don't get me wrong, all of the visitors were very warm and friendly. But I feel like a fresh wave of reality rolled ashore.

There isn't really time to brace for the change in life, or even the idea of someone coming in to your home to help care for you.  Still, I am thrilled at the idea of Amanda getting some time for herself.

ALS has quietly changed the roles Amanda has to play in my life. Needless to say, the vast majority of the changes haven't been helpful for our relationship. The changes hide in plain sight.

We have more visitors coming in what looks set to be an interesting week ahead.

Wednesday, January 8, 2014

Oh, and

Two other things occurred to me about personal milestones from last year.

I should have mentioned that Amanda and I started visiting a counselor to talk about everything that's going on. There wasn't a particular event that triggered the decision to seek counselling. The time just felt right. We are still in the late stages of our honeymoon period with our counselor - we mutually agreed to ensure we're a good fit before going full steam ahead. I'm happy with everything so far, and I'm glad we're going.

In the spirit of full disclosure, I thought I should also give an update on my health and medication. The medicine list is long, but fairly simple to cover:

  • Rilutek for ALS
  • Prozac for depression
  • Dronabinol to enhance my appetite
  • Neudexta for emotional lability
  • Xanax for anxiety
  • Advair for asthma
  • Rubinol to suppress excess saliva

In terms of my symptoms, I alluded to some of them in my last post, but I'll try to be more specific.

My weight has stayed much the same for the past year. Usually just over 200lbs. Dramatic weight loss is a huge red flag for pALS. I must give some credit to Dronabinol, which increases my appetite. The rest of it is thanks to Amanda, who feeds me at all hours of the day, and has reached an advanced level of expertise when it comes time to move my heavy, weak frame around.

My breathing function has declined. I don't have numbers at hand to back that up, but anecdotal evidence tells enough. I can gently bike for three miles without too much stress, but I feel like I have to heave my chest if Cora or Louise start wrestling on me.

Physically, I require help to stand, sit, walk, or lay down. Seated, I can push my elbows out and back along arm rests. I can move my fingers and hands with very limited range.

I am dangerously unsteady on my feet. I no longer have the ability to quickly correct myself when I'm off balance. Wheelchair time for me.

Tuesday, January 7, 2014

In To The New

The end of a calendar year brings about an assortment of productions that seek to neatly tie up the past 12 months in to a neat, easily digested package.

Since I have entered a short post-Christmas-break lull, I thought I'd have a scan through the past 12 months of blog posts.

2013 started on a good note. I proclaimed:

I shall endeavor to enjoy every moment I have. If ALS is to rob me of time, I'll be damned if I'll let it take away my happiness.
Love and laugh more. Simple.

That goal was hard to attain. Hard, but not impossible.

We commenced our home renovation in January 2013. I've found that big life changes take me a couple weeks to process, and deal with. Even overwhelmingly positive events, like the renovation, take time to come to terms with.

I created tags/subjects for my blog posts. Born from a concern that I might forget to tell my girls some important message, the tag TMDG was created. Most posts seem to be fairly sensible, but I didn't impart the meaning of room for improvement!

I had another incredible trip to Scotland to visit family and watch the Celts.

The second Conway Cup was a huge success.

I posted lots of music videos.

Cora and Louise expanded their care giving skill set. My mind sways back and forth on this issue. Previously, i have been very bitter and saddened to see my daughters having to help me, as if ALS was taking a portion of their childhood, and not just my life. These days i tend to have a more appreciative if the new ways the girls interact with me are a testament to our love.

I posted more music videos

People from our community came together to support our family.

My health, all things considered, is okay. A few early dips in my body weight have leveled out. But my breathing function has declined. I recently began some work in the gym to see if I could somehow help my lungs...

Amanda and I did the paperwork that adults have to do - wills and directives - I also gave Amanda power of attorney to make legal decisions on my behalf.

I got a computer I can control with my eyes. Amanda will tell you that I haven't been off it since it arrived!

I have been poor at banking soundbites of my voice.

I posted more music videos.

Louise told me she loved me.

Cora began school, and her advances inspire me daily.

We went to DC and met MJ and Libbi.

Amanda stayed at home to care for me on a full time basis.

I got a BPAP machine to help with my breathing at night.

With encouragement from Amanda, I became comfortable with the idea of a powered wheelchair and a wheelchair minivan. Both are used a lot.

I had another fun season with the guys at VMI.

I began a writing project about ALS that I still haven't finished.

The run from my birthday until the new year has been great fun.

I wonder if 2014 will be as busy?

Saturday, January 4, 2014

Padding Around in the Middle of the Night

Amanda has taken sole ownership of the role of soothing one of the girls when they wake up in the middle of the night.

Had this happened three or four years ago, I would have kept my eyes firmly shut and been quite happy that I go to stay in bed.

These days I miss everything about it. I miss the walk to their rooms, I miss soothing them back to sleep, and I miss giving them a kiss on the cheek once all is well.

Thursday, January 2, 2014

Renovation Roundup

I felt like I had one or two images of our master bedroom renovation, and I found them in this opening post on the subject.

Sandwich those images in the middle of my recent post about the finished project, and that's about as much of a visual as I can give.

But I felt the need to underscore some points about the project.

Amanda and I were fortunate to be able to afford the renovations. We re-financed our mortgage because I was retiring, and the rates were incredibly low. We also had a number of folks that put their hands in their pockets to help out.

To save on labor costs with the construction firm, friends demolished the old bathroom for us. Definitely not something that should be done without the advice of someone with experience in the building trades; structural load, electrical  concerns, plumbing concerns, and heat and AC concerns should be approached with particular care. From a budget standpoint, a screw up during any stage equals more money. Still, demo is fun and cathartic!

The cost of our materials was very reasonable. A personal contact was key for us. Not everyone has close ties with a building materials supplier, but there are other option...some states and even some NGOs offer grants or low interest rate loans for home modifications. Sadly, I don't have a list of these programs, but I would strongly recommend asking your doctors for advice - this aint their first rodeo.

We were fortunate with the layout of our home. Firstly, it's a single-story property, so simple ramps made the property accessible. Secondly, we had an extra bedroom. We stayed in our old bedroom while work continued on the renovation. A simple plastic sheet really kept the level of disruption to a minimum.

The renovated bedroom/bathroom/closet/entrance space turned out to be a previous renovation to convert a garage to a master suite. When we removed the en-suite floor we discovered the crawl space was a finished concrete slab. Looking at the window placement, we are pretty sure the windows are where the garage door used to be.  ... All of which meant that the guys doing the work had very good access to the entire space, which saves a lot of  time for construction workers.

My last bit of advice is rather bitter. Depending on your circumstances, and the rate at which your symptoms progress, a renovation may not be the best bang for your buck. Maybe a luxury trip, as an example, would be better. Or a trip to see old friends. Or notch something off your bucket list.