Thursday, May 15, 2008

Aftermarket add-ons for your wheelchair - The Horn

During the final six months of Bill’s life, his brother Howard, his wife Flo, Bill and I spent a good deal of time commuting between Port Orford, OR and Concord, CA. On one trip to Langlois Mountain to visit the Sr. Lichtigs, Bill complained that drivers couldn’t see him and he often felt unsafe when he was out and about on city streets in his wheelchair. He felt that he needed a horn that could be heard - the "piece of crap that came with the chair" just wasn't cutting it! I will share with you that Howard and Bill shared a distinct glint in the eyes whenever either of them had a "great idea". Some have called in mischevious...I preferred to think of it as trouble - with a capital T! On this particular day it was Howard's turn to have "the glint". Four of us piled into the van and headed to the Radio Shack in Bandon. The result (I’m sure you know where this is going!):

  • 12 volt battery operated siren horn - $25 on debit MasterCard
  • Assorted wires, wire ties, cabling, duct tape and a pile of AA batteries - $ 34 on debit MasterCard
  • The ability to scare the living daylights out of your wife, your dogs and any drivers who dare to ignore you – priceless!

A few months later, Bill decided that the horn still wasn’t quite enough, so he and Howard, in a tequila/scotch inspired brainstorming session, determined that "launchable" rockets were in order. You Top Gun. Howard headed back to Port Orford, enlisted the assistance of the local cub scout troop (he was a pack master) and returned to California a few weeks later with some very lifelike looking rockets – minus the gun powder - which were promptly mounted to the underside of the laptop tray on the wheelchair. Success!

The "boys" spent the remainder of Bill’s life trying to figure out how to actually launch the rockets without blowing up Bill, the chair or the surrounding neighborhood! Given enough time, I fear they may have succeeded. Thank goodness...the world will never know!

ALS is not a license for either of you (but especially the patient!) to be a jerk.

Treat each other with care. This is an incredibly scary time for both of you. Early on, when Bill fell, my initial reaction was fear and I would yell at him - "didn't he know that (x) would cause him to fall? What in the world was he thinking?!" He finally had the courage to say to me - after he'd fallen and cracked the tile soap dish with his head (it's a great story!) - "I didn't start out to fall, it's not my intention to scare you, but you can't just start out by yelling at me!"

We both shed a lot of tears that evening, but I quickly adopted a personal rule and in spite of my terror, I didn't approach him with anger. More than once, I'd laugh, sit down beside him, check for blood/broken parts, make a smartass comment about the situation ('hmmm...lucky for us you're in the advanced ballet class now!" or "3rd grade gymnastics has really come in handy"), take a breath and then ask if he had any thoughts on how to get him upright/safe again. He usually did...and we managed pretty well! I treasure those moments the most eyeballs are leaking as I type!

Learn to let go....

This one is really HARD. I am a board certified control freak! I wanted (needed!) to have everything be normal. Please try not be as stubborn as I was on this point!! I swear to you on my life...nothing is going to be "normal" anymore. And realistically, now that I'm on the "other side" of ALS, I've learned that "normal" is pretty subjective! I promise you...the only normal, is what really "is", here and now, this very minute, cold hard facts. While completely counter-intuitive, by letting go and living totally in the present (do what you can, with what you have right now and worry about the rest another time) you actually gain control. Trust me...I'm still working on this, two and a half years later....but I've almost got it!

Anti-depressants are truly God's gift to us!

Get connected to a mental health professional...NOW! I was very fortunate. On his own, Bill applied to Kaiser mental health very soon after the diagnosis. We got a fabulous psychologist - Sherry Batterson - I still keep in touch! She was a safe place for him to vent about what he was losing and how he was feeling. She gave him very concrete ideas on what he could do to manage his circumstances. Toward the end, she saw us both, primarily because I literally became his voice. She did a great job keeping us straight and helping us focus on what mattered most. I can't promise you a Sherry, but still strongly encourage both of you to find a psychologist.

Check with your PALS' psychologist, primary care physician or
clinic doc for a prescription for some type of anti-depressent. In my opinion...depression is a very normal part of ALS and the symptoms need to/can be managed. I believe that the docs from the ALS specialized clinics agree.

I would also strongly urge you to consider (and ASK for) them as well! I didn't think I needed them, but my gynocologist (during a routine girlie checkup) prescribed them for me. I started taking a low dose (20mg) of Prozac about 6-8 weeks after we got the diagnosis, got up to 40 mg about 6 months in and then took myself off about 8 months after Bill died. The meds give you the "headroom" to to deal with everything that's happening. I truly believe that the meds allowed me to keep my head and my sanity as we dealt with the freight-train pace of Bill's progression. Just so you know...Prozac has a 6-8 week "ramp-up" time, so sooner is better than later!

You don't have a lot more time together...

The good news is that you know that! Make the choice to use whatever time you have wisely!!! I will always be grateful to our therapist Sherry Batterson for the lessons and direction she shared with us early on. They are:
  • Say what you need to say.
  • Do what you need to do.
  • See who you need to see.
  • Enjoy every minute that you have together.
You don't have any extra time to pussyfoot around. You can be blunt or direct without being mean or mean spirited. This means that you have to get off the eggshells and tell your PALS that you're scared, angry, overwhelmed, whatever. You must also hear the same from them. Give yourselves permission to take time out if necessary and then go back in to talk about the tough stuff. Write it down if you have to. Hire a mediator if you have to...but get it done. Then, once everything is off your chests....truly let it go! I don't believe either of you can afford to harbor any ill will.

Talk to each other about how your PALS can continue to contribute to the household without getting on your nerves. I don't know if you have children, but if you do, think back to when they were 3 or 4 and learning to dress themselves. It wasn't perfect, but they learned independence. The same principle applies here. Allow your PALS the dignity of doing what they can, gracefully pick up the bits that get dropped (if necessary) and then let the rest go. You'll have lots of time to clean it up (and think about how you would probably do it over if you had another chance!) later.

If there are things that are really important to you, just tell them. It wasn't easy, but I got really picky, really quick, about anything that took me away from having fun with Bill!

Shift F10

Across the top of a PC keyboard, there are F keys or shortcuts to various operations on the computer. The shift key doubles the capability of the F keys. Bill quickly lost the use of his vocal chords, but never lost his "voice". He used a laptop to speak and programmed the F keys to say certain everyday things for him. He could touch 1 F key to greet you with a wave file of the 3 Stooges…Hello, hello, hello….hello. Another F key would tell you that he had ALS, he could understand you perfectly and looked forward to a conversation, but it might take him a moment to respond. You get the idea. F1 was (a very enthusiastic) Yes. F2 was ( a brief and to the point) No.

His friend Janey assisted with the "adult" content. Shift F10 was “shut the F_#% up”. Shift F9 was the companion “go F_#% yourself”. Both had several contexts:
1) That is incredible….I can’t believe it!
2) No way….you’re kidding me!?
3) Oh man…I certainly didn’t see that coming.
4) Oh….aren’t you quite the smartass today?!
5) You need to stop talking right this minute.

The key to context was all in the eyes! There were times when we were together with friends and one of the group would be in context 4. We would see Bill reaching for the keyboard and would quickly say, “don’t even reach for Shift F10!” or “go ahead…I deserve a Shift F10 for that”! We would be rewarded with a huge grin, a nod of acknowledgement and a few minutes later, he would have queued up an appropriate song.

Key: It's critical to retain your voice!


In this blog you will meet the faces of an ALS community. These communities are everywhere, literally all over the world. This one happens to be in the San Francisco Bay Area of California. This is a love story…dedicated to a man who lived, laughed and loved in a community. Now each of his friends carry his story, because he can no longer tell it for himself. It takes a village to care for an ALS patient. This is the story of our village. It is my privilege to share this collection of thoughts. Please use them as a starting point for finding your own best path.

Life is a series of events handed to you. It’s not the event itself that’s important…it’s how you handle the event. My dad explained to me early on that there are two ways to handle the events in your life:
1) Stay in bed, pull the covers up over your head, don’t come out….ever.
2) Get out of bed, dry your eyes, put one foot in front of the other and do the best you can.

I now believe there is a third option:
3) Don’t even bother crawling into bed, give the event a “raspberry”, and then run and have fun! My new favorite quote is from Matt Frewer. "Never knock on Death's door: ring the bell and run away! Death really hates that!"

So…once we got our ALS diagnosis, we had two rules that we lived by. We weren’t perfect, but we did a really good job!


Rule #2: Get mad at/fight the disease, not each other! ALS will test and bring out what's great and maybe not so great in your relationship with those you love. Neither of you caused the ALS to happen and neither of you can change the diagnosis. You have a choice to make together... You can work together to make the best of a shitty hand of cards dealt to you. OR… you can spend your time fighting. It really is a choice.

You are incredibly brave….please don't ever forget that! But…I have a question? How do you want to be able to coach the next ALS family that's coming behind you? Now is your time to decide how you're going to write your ALS story....together! The rest is still unwritten.

It is only now that I'm realizing how fortunate I was/am and how much Bill and I grew, as individuals and as a couple once ALS was introduced into our relationship. It is my fondest prayer that you will find new strength in yourselves and each other and that once your PALS is gone, you'll look back fondly on this time and be glad that you got it together, together!