Over the last several years I've been dealing with various stages of disability thanks to ALS. My goal is to share solutions and review various products/tools/devices that I have found particularly helpful.

Tuesday, 11 December 2012

More Funny Business

 It's been sometime since I've been able to use a regular toothbrush, so for several months now I've been using an electric toothbrush. At this point in time it started to become a little more difficult for me to turn the toothbrush on, I lost enough dexterity that flipping the switch was becoming a challenge.

So, I took this problem to a couple of technicians for advice. We discussed several options for how to modify the toothbrush switch to make it easier for me to turn on and off.

At one point, I'm discussing this with the technician who would make the modification and we were going in circles about how to add a switch to battery box. Meanwhile the other technician has my toothbrush on the table and is playing with a metal block to flip the switch. He then says to me: "what if we were to mount a block like this one on your counter. This makes it very easy to catch the switch to turn on the toothbrush."

I give a moment's pause before replying with: "okay, if we do that… What happens to the toothpaste?"

"… Oh yeah… Right."

We then settled on the simple solution of gluing a rubber bumper to the switch…

Status Update

Its been several months since I posted a status update, it probably little overdue ;-)

Strength and dexterity wise it's been a long slow downward progression from my arms and hands. My hands have become particularly quite weak and I have lost the opposition between my thumb and index finger, I can't really pinch anything anymore. I have some solutions for this for my Grab it pack using was called a snap Dragon buckle. I will post more about these later… Suffice to say, the snapdragon buckles are working great!

My arms and shoulders are also quite weak, I'm no longer able to lift my hands up over my head providing me some interesting challenges for things like washing my hair.

My legs, haven't really seen much change. I do have some balance issues which I say have not really changed, and I still fall down or trip once in a while because of them. They do however suffer from spasticity at night, making getting a restful night rather tricky… Add to that my dog in our bed… And a three-year-old who likes to come visit. It's odd, it only seems to happen at night. It lasts for about half an hour in the morning and then after that they pretty good for most of the day. Getting up out of chairs has become more difficult, but I do think that's more because I shoulders than anything else.

I'm still receiving weekly IVIG treatments, we did go up to 80 g six months to see if it made a difference. I didn't see any benefits so we went back to doing 40 g every week. It's kind and nice to be back on a shorter schedule as opposed to spending about eight hours after Nero. It was never too big of a deal, I always viewed it as my job ;-)

Yesterday I was back at the Neuro for another follow-up, and it looks like I might be in line for a clinical trial. It took a long time the line this up because my condition isn't classic ALS. There were some anomalies which makes me a less desirable candidate for trials. But it looks like there's one in line so, fingers crossed!

And hooray for experimental drugs!

I'll try to make it a point from time to time to post a little something about how the trial is going and if the drug is having any positive effects.

Monday, 3 December 2012

Hacking the Griffin Beacon

I've talked about the Griffin Beacon in a previous post and how the use of batteries really limited its function.So with these limitations in mind, and my desire to use the thing… Because it is far easier for me than a regular remote control… I contacted the tech department of my rehabilitation facility with the request to convert it to run off main power.

Now, this conversation has been going on for several months, and understandably the department is really quite busy. So I have no problems with the delay in terms of getting answers in part because my needs would quite as immediate. But finally I got an answer about two weeks ago explaining what could be done, here is some of what they suggested in the mail:

  • I would have to send in the Griffin Beacon for modification
  • this modification would void the warranty
  • the modifications would cost around $90
  • they recommended as an alternative to use rechargeable batteries or Ni-MH rechargeables 

Now after a couple months of playing e-mail ping-pong, this frustrated me a little bit so I decided to look into it myself.

First of all, looking at the bottom of the Griffin it runs on four AA batteries, which from my high school physics class tells me a maximum of 6 V when mounted in series. So it should be a very trivial thing to bypass the battery box and hook it up to in AC adapter.

My first idea was to find an adapter of matching power, spliced the lines and attach it to the relevant ports in the battery compartment. Oh right! My hands don't work… Dammit! Can't do it myself. So for some ideas I applied some Google-fu and very quickly found the following… How to modify your Griffin Beacon to use an optional AC adapter

Well I'll be a monkey's uncle, this is almost exactly what I was thinking of. So I contacted my brother back in Vancouver as I know he has access to some of the resources. We talked about it briefly and he had pretty much the same idea as shown in the Griffin hack.

He went to work on it, finished it inside of 20 min. and put it in the mail. Two days later I had it here in Montréal, plugged in and working reporting a constant 60% power (we used a 5 V adapter instead of the 6 V) it's been plugged in and running for four days now…

The other reason I looked into this is because I really had some issues with the proposed solutions from the "experts"…

  • estimated cost of $90
    • the Griffin Beacon itself only costs about $70, I find it hard to justify an adaptation that exceeds the cost of the unit.
    • My cost so far is about $15 for shipping, and $10 for the adapter. If you have someone can do it for you but you probably do it for a $1.50 as shown in the link…
  • voiding the warranty
    • the Griffin Beacon hack does not void the warranty as no internal components are modified
    • there is no risk of fire or other hazard as we are using exactly the same power as provided by the batteries.
  • use of rechargeable batteries
    • yes there is a cost issue with changing the batteries, but in my case this was not so much the concern. Our batteries are purchased from Costco in bulk and therefore the individual unit is quite cheap. The greater issue for me, and while wanted this adaptation was so that we would not have to change batteries. I am unable to do so did my dexterity limitations.
      The Griffin Beacon hack completely removes the requirements for changing batteries.
    • Ni-MH rechargeables suffer from the same replacement issues we are trying to resolve
we taped the Dowells as we cut them a touch short…
So once again being proactive pays off. I'm very much learning that you can go see the experts for advice, but it is not always in your best interest to treat their solutions as the only one. With a little bit of ingenuity and time, very often you will come up with solutions that are best for you. After all you are the one living the situation, they are not and at times they may not see the simplest of solutions for whatever reason… These can often be the best and most effective.

that's right! This guy! Thanks!
I would also just like to take a second to give a shout out to Huy Le for his generous contribution to this blog! Thank you so much, it is greatly appreciated.

Pop me a note if there's something you'd like me to review specifically :-)

Saturday, 1 December 2012

"Tweet tweet twitter tweet !" Twitter service is now online!

 Follow my more daily adventures with ALS & and upcoming projects relating to this blog.
follow me at: @Cpt_C_Pike