Support Group – Strength and Knowledge in numbers

I am very fortunate to be able to attend a local ALS support group, supported by the Greater Bay Area ALSA chapter, located in Northern California. Each month, anyone from the area is welcome to share a cookie, their story, and learn firsthand about how to cope with ALS. More importantly, in my opinion, is that for just a few minutes, attendees know without a doubt, that however hideous this disease is, one does not have to fight alone….there are others on this same journey.

I am always impressed by our group leader Eileen Nevitt’s ability to secure top flight speakers. A few months ago, Dallas A. Forshew, R.N., BSN Manager, Clinical Research (ALS) at the Forbes Norris ALS/MDA Clinic gave a presentation on the ABC’s of ALS. We were fortunate that she allowed us to film her presentation, which can be found on the chapter’s YouTube channel.


Yesterday, Margie Petrakis, RRT, RN and one of the outstanding Regional Care Managers in Northern California, gave an informative and comprehensive presentation on respiratory care and equipment for ALS patients. 90 minutes passed quickly as she discussed the physical mechanics of breathing, what happens to patients with ALS, and the various options to manage symptions, available to patients to maintain good quality of life.


Maintaining respiratory health is important, regardless of an ALS diagnosis! While especially important for ALS patients, some of the very basic things we can ALL do keep breathing easily are:

• NO smoking!
• Early detection and treatment of everyday illness – don’t let a “little cold” grow up!
• flu/pneumonia vaccines
• avoid infection – steer clear of favorite germy hotspots like crowds, public transportation, doctor’s offices, sick people, magazines, grocery carts, kindergarten classes, etc. and, if you must venture into these places, take precautions like paper masks, hand sanitizers, disinfecting wipes.
• Wash your hands!

Respiratory Care for an ALS patient breaks down to three major components: Testing, Treating symptoms, and Follow-up (clinic and home care).

Testing determines how efficiently your respiratory system is operating and gives clinicians the necessary data to make appropriate recommendations for your individual circumstance. In addition, you and your primary caregiver are the most reliable source for what is “normal” for you. You know your body best. In order to determine the best possible solution for you, it is critical to participate and partner with your medical team. If you experience any of the following symptoms, please share them with your clinician, as they could indicate the need for additional testing and/or solutions to keep you running your best.

• Excessive daytime fatigue
• Trouble thinking or concentrating
• Morning headaches
• Not feeling refreshed in the morning
• Frequent awakenings at night (known/unknown reasons, unusual sleep patterns, nightmares, night sweats, respiratory complaints)
  

Follow-up

Once you and your physician have agreed on a colution, COMPLIANCE is critical. And…it will probably take some time to get used to the new routine. Margie shared some helpful tips.

• Choose an interface (mask/nasal apparatus) you think you can live with – there are many to choose from. Some vendors offer special 30 day trial programs.
• Whatever interface your choose, make sure it fits properly (not too loose and not too tight) and that it doesn’t leak into your eyes. An RT (Respiratory Therapist) can help guide you to finding the interface that is “just right” for you.
• If the vendor doesnt respond, contact your physician immediately and request a change of vendors early!
• Be persistent and keep trying. It may take a couple of tries to find the right solution.
• Keep a positive attitude and work with your caregiver to make the necessary routine adjustments.
• Enjoy the benefits of better breathing!

Each of us received a copy of “ALS Respiratory Decisions” A Guide for Persons with ALS and their families, produced and distributed by the Jim “Catfish” Hunter Chapter of the ALS Association. This concise and informative guide was written by Connie Paladenech, RRT, RCP with Sue Humphries, LMSW. I found this guide to be well written and as with all information written regarding ALS, is designed to provide some basic information. It should help guide the conversation with your professional health care team and is not, in any way, a replacement for sound medical advice. To find an ALS chapter providing services in your area, please visit the National ALSA website.

Aftermarket add-ons for your wheelchair – Safety and Style

A while back, I wrote about the horn Bill and his brother rigged up for his motorized wheelchair. If you missed it, read “Aftermarket add-ons for your wheelchair – The Horn”.  This post is my account of a few OTHER additions made to the chair…

 

 

We got the wheelchair in early March 2005. To break in the new wheels, Bill decided to take himself to the barber for a haircut. It was a perfect spring day and his favorite Supercuts salon was only about 2 ½ miles from the house. We knew he had enough power, so I checked his wallet on a string, fastened his seatbelt, reminded him about looking both ways at the intersections, kissed his head and sent him off. Little did I know my admonition would come in handy! About two and a half hours later he returned with a buzzcut and a “mad-on”. Dear Lord…he wasn’t gone that long, what could possibly have happened? Through his wild eyes and keyboard banging, I learned that drivers could not see him, they often honked at him, and a couple of times he felt really terrified. For the record, it’s not easy to scare a guy who made his living by running into burning buildings!

Over the years, I’ve learned that there are times when it’s best to just listen and not try to do or say anything. This was one of those times. Once his blood pressure was back into the range of normal, he announced that we were headed to a bicycle shop and Home Depot, in that order. I grabbed my shoes, my handbag and the car keys, and loaded us up into the van.

We got to our favorite bike shop and he sped right to exactly what he wanted – a bright orange flag, the kind that parents generally add to a tricycle or the bike of a small child. Next stop…Home Depot. That part of the trip did not go as smoothly! He was having a hard time explaining to me what he had in mind. Never mind that he had to use “talky” to try and translate! We started to draw a small crowd! Frustrated for both of us, I told him to stay put and went to find a hardware guy! The universe was truly watching out for me that day, because the first guy I found turned out to be an angel in an orange apron!

Within just a few minutes, he completely “got” what Bill was trying to accomplish. While he was looking at the chair, he noticed that Bill had strategically angled his walking stick between the chair seat and the handles. He asked if that was working and the answer was “only part of the time”. They had another quick round of discussions and our new friend set about making the necessary alterations. About 20 minutes or so later, not only was the flag attached to the chair, but so was a piece of PVC piping. Both the flag and the piping were mounted to the back of the chair with metal brackets. The walking stick fit neatly into the pipe and his baseball cap fit over the pipe, keeping both close at hand. The flag actually had a joint, allowing me to detach the top part of the flag so that he could get in and out of the van easily. When it was in place, the flag extended approximately 3 feet above his head. It was just enough to make him feel safer when he was out and about on his own. It was really quite ingenious!

A few weeks later, our good friend “Aunty Em” gave him a bouquet of bright yellow (his fave color!) silk daffodils. He loved them and immediately asked me to stick them into the PVC pipe to wedge the walking stick. Turns out, the rattling was making him a little crazy and this was a perfect, stylish solution! The daffodils were a small bit of sunshine wherever he went and never failed to draw a smile.

In addition to the normal wheelchair adjustments and equipment additions we made to accommodate ALS as it progressed there was one final bit of flair added. The chair we received came with 3 sets of removable fenders. So his best friend took the silver set and with the help of an artist friend who details fire engines, added some hand painted flames to the otherwise vanilla looking fenders. When all was said and done….it looked like he’d won a trip to the reality show “Pimp my Ride”!

The addition of the flag allowed Bill to feel more confident when he was out and about on his own – a true blessing which allowed him to keep his independence just a little bit longer. The flowers and the flames were the icebreakers that made the chair a little less threatening to strangers and children. For me….I just smiled and was thankful that ALS only got his body and not his spirit!

Aftermarket add-ons for a motorized wheelchair – The Horn

During the final six months of Bill’s life, his brother Howard, our sister-in-law wife Flo, Bill and I spent a good deal of time commuting between Port Orford, OR and Concord, CA. On one trip to the top of Langlois Mountain to visit the Sr. Lichtigs, Bill complained to his brother 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 – and the “piece of crap that came with the chair” just wasn’t cutting it!

 

I will share with you here that Howard and Bill shared a distinct glint in the eyes whenever either of them had a “great idea”.  Some have called it 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, about an hour from the house. 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 know…like Top Gun.  They ran out of time, so 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!

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!