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.

Learning to Laugh

ALS has taught me to laugh. Really laugh…from your belly until you start crying…laugh! And…I’m so very grateful! There are so many scary, crappy, outrageous, ridiculous, sad, terrifying, (name that emotion) moments with ALS. With that said, there are also a lot of really funny (slapstick comedy) moments with the disease, and these are moments I treasure most. They get me through the “I’m so sad I’m sure I can’t breathe anymore” moments I still go through almost 4 years later. I have learned..it’s not what happens, it’s how you handle what happens. Laughter was the life saving/relationship saving option for us. Here are a couple of my fonder moments….

 

Fun with Feeding tubes

The body is a closed system! When you introduce a hole (feeding tube), you “open” the system – but it can be managed. It requires that you pay attention and be completely present to the moments when the system is open! BIG NOTE HERE….If you don’t keep control of a feeding tube, you allow pressure that is normally controlled by a stomach wall to run free, and you end up with stomach contents on the ceiling! This BAD but can be especially entertaining if there was red liquid tylenol going into the tube when you let go!!!! Once I regained control of the tube, capped it off and caught my breath, I laughed so hard I cried!

 

Speaking of feeding tubes….There was a communicaton glitch between the surgeon and his staff when we had the surgery to install Bill’s feeding tube. As we were finishing up in the recovery room, I remember saying to the nurse..”Um…Great…we are the proud parents of a feeding tube. I have no idea how to feed it, change it, burp it or put it to sleep! Now what?” Panic and shock ensued! There was a scramble to get someone to give me the fundamentals before we left the hospital. We got a full training the following day! Lesson learned: Humor helps get you what you need.

 

Garage Door Opener
Bill’s brother Howard and another attorney friend of ours agreed to install a garage door opener for me. This led to the installation of an additional electrical panel. I know…who would have thought that an attorney could/would tackle this kind of task?! Bill was a little frustrated that he was unable to help, so he set about creating some mischief for his brother. He found a laser level in his toolbox, waited very patiently, and chose his time to shine a light on the work.

 

As Tom and Howard were very intently putting the final touches on the work, a tiny laser dot appeared on the wiring. Both men were fully aware of what they should be seeing on the panel and a laser dot was not on the list. Quietly, because he could not speak, Bill was doubled over in hysterics at his brother’s panic. Once the hysteria died down, we reminded Bill that any judge worth his robes would have dismissed any murder charges levied on the guys as justifiable homicide! I think of this story every time I watch a Powerpoint presentation and laugh! Oh…and the garage door opener still works perfectly!

Truly Living, an essay by Julia Miller

Angels are delivered to us every day. Sometimes we know…and sometimes we don’t. We were fortunate to receive help from EXTRA HANDS FOR ALS, founded by ALS patient Jack Orchard and his wife. Matt Nevitt and Julia Miller were the students who came every Monday for about 6 months to be with Bill and me, to help out and be our “extra hands”. I will always be grateful to, and hold a special place in my heart, for both of these sefless young adults. Today, I share the essay that Julia wrote about her experience. Enjoy!

Truly Living

When I first signed up for Extra Hands for ALS, I thought it would be a nice way to spend free time, volunteering with real people and trying to make the world just a little better. I had no idea that the day I walked into 1847 Linwood Drive would forever change me. Extra Hands for ALS is a program through which patients with Amyotrophic Lateral Sclerosis (“ALS”) are connected with volunteers who help them accomplish things they no longer have the ability to do on their own. ALS (commonly known as “Lou Gehrig’s Disease”) is a heartbreaking and debilitating disease that slowly deteriorates a person’s motor functions yet leaves the brain untouched, in effect holding them prisoner in their degenerating body until they die. ALS is a terrible disease, both for those who have it and for those who must watch their loved one slowly die in front of them. Yet to die from ALS is relatively easy compared to living with it. It requires an amazing strength and bravery, and an acceptance that our time alive on Earth is not guaranteed. Although he knew that this disease was terrible in every way, my patient Bill Lichtig lived with it with an uncanny dignity and was able to indirectly use the disease to teach me amazing life lessons. And he has changed me forever.

The day I met him, Bill wore glasses, had a cane resting against his knee and two golden retrievers lying at his feet. He stood up to shake my hand in greeting although I could see it pained him to do so. This was my first glimpse of what I learned was his steadfast resolve to live despite his disease, an amazing bravery I hope to one day see in myself. Bill has left me, but he leaves me with resonating lessons about three things: love, life and laughter.

Bill was a lover, of people, of life, and of laughter. You cannot just teach someone about love, but you can show them. Bill showed me that you must let people love you, even when you do not want to. Bill’s wife, Kathie, was his primary caregiver. This meant that she was in charge of feeding him, among other things. Seeing Kathie fearlessly feed Bill through his feeding tube truly showed me love. She chatted with him about unimportant things while she did it, I guess in an attempt to show him it was not a big deal to her. Yet through that action I could feel the outpouring of true, deep love they felt for each other. Kathie could have had a nurse take care of Bill, but she did not; Bill could have told her he wanted a nurse so as to not inconvenience her, but he did not. Bill allowed Kathie to care for him because he loved her, and Kathie never stopped nursing Bill because she loves him. There is a song by a band I like, Death Cab for Cutie, who sings a song with the lyric: “Love is watching someone die.” When I first heard those words I instantly thought of Bill and Kathie, who have taught me more about love than I may ever learn the rest of my life.

Besides love, Bill also taught me about life. One day, before he could no longer comfortably chew them, Bill was enjoying his daily snack of Oreo cookies and he said to me: “Cookies fix anything.” While unfortunately cookies could not physically cure Bill, they symbolized a deeper meaning. Cookies were all the small things Bill did to enrich the last part of his life. Sitting outside in the sun, petting the dogs, even sniffing the air in the kitchen as I attempted yet another meal under his instruction. Bill showed me that focusing on small, positive things can help you ignore large negative ones—or at least keep them from ruining your day.

One day Bill, who liked to speed in his motorized chair, was enjoying wine through his feeding tube. He told me if a cop pulled him over he was fine because he could truthfully say: “Officer, no alcohol has touched my lips.” I know his mischievous humor kept him alive when he no longer had the physical strength. This alone proved to me the importance of laughter, and he made me laugh constantly. Once he could no longer speak himself, he used a computerized voice, although typing was tedious and frustrating for him. He maintained his dignity, even when others were not so understanding. For example, he was sometimes mistaken for a prank caller when using the telephone, but his strength to even recount these stories to me displayed an undaunted will to fight his disease. A coward would be embarrassed by such an event, but not Bill—by reliving the experience he was showing everyone he was still here, and still strong.

The most important lesson I learned from Bill came when he told me: “Yes, this isn’t an easy disease to live with. But there’s nothing I can do about it. I can either spend my days crying or laughing—and I choose to laugh.” This statement concisely sums up what I learned from Bill. I learned not to let small things, like forgetting an item on our grocery list or messing up our projects, ruin my day. I learned to see a small mistake as just that: a small bump in the road rather than the end of the world, as I used to do before I met Bill. He taught me that so much of life is mistakes. Who we are is based on how we deal with those mistakes and how we react in the life’s obstacles. We can cry or we can laugh, and it is always better to laugh.

Bill also taught me how to die. August 10, 2005.

Material Things Don’t Matter

I know, we’ve all heard it! But it’s really interesting when you finally “get” it. I’m not great with my ability to totally recall bible verses, but I know there is a passage somewhere that goes something like “ashes to ashes, dust to dust, we shall all return to our maker”. Frankly, I’m a 70′s girl and think that the band Kansas got it right with “Dust in the Wind”, one of my all time favorite songs to belt out in the car….but I digress.

 

Because, we had a year to spend together and say our goodbyes, Bill and I had the chance to talk about what he wanted, what his life would stand for, and how he wanted to die. At first I was pretty “creeped out” – no one rationally chooses to talk about death, the meaning of life and how you want to be remembered! Do you?? But once he convinced me that he was serious, I swallowed hard and agreed to just listen. Turns out, it took the full year, but it was one of the smartest things I ever did! For the record, it’s not easy to have these conversations, but for me, I received the ultimate peace. I didn’t have to guess or wonder what he wanted….I already knew.

 

My husband was a firefighter for 20+ years. He loved his job and was really good at it! He left the department and went to work for Sprint PCS. Again…he was really good at what he did. Up until the day he went on disability, he was actively working with emergency service providers to fine tune the response program for 911 calls from your cell phone in Northern California. Over the years, he touched (and saved) a lot of lives. But he often wondered if it was “enough”.

 

Bill was part of a UCSF memory and aging study, conducted by Dr. Bruce Miller and his extraordinary research team. The sessions were informative and fun – something to look forward to. During one visit, because of the family history of ALS and FTLD, we were asked to consider “gifting” his brain and spinal cord to the research program. It would be autopsied and contribute to the ongoing research. After talking it over, Bill decided that if he never did anything else with his life, at least he could consciously contribute to the process of trying to find the key to ALS and FTLD. Turns out, for him, that would be enough!

On our next visit, we agreed to the donation and signed the necessary paperwork. We were all finished and as we were about to leave, the program manager, after thanking us profusely, asked “what would you like to do with the rest of the body?” eeeeeeeeeeeerrrrrrrrrhhhhhhhhh What?! Turns out, they really wanted JUST his brain and spinal cord. In true style, he quickly typed the following response on his laptop…”Well, I’m not gonna need it!”. They looked at me and I (equally as quickly!) assured them that I did not want it! Lucky for us, the University has a Willed Body Program. It’s awesome! We signed the additional paperwork and never looked back. (side note:  I have since completed paperwork for myself and that feels pretty great!)

 

As the ALS progressed, we talked about everything and he even helped with the arrangements for his memorial service. His only request was that when he died, he wanted to make sure that his “never give up” silicon bracelet and his golden retriever, beanie baby went with him. It’s a long story about the beanie baby, but suffice it to say, it was important! We ultimately had to leash the beanie baby to his wheelchair to make sure they were always together!

 

On August 10, 2005, Bill passed peacefully in his sleep. Emmy, the angel aide from hospice, arrived in the early morning to give him his last bath. After a quick discussion, it was decided that he didn’t need any clothes – that a clean sheet would suffice for his final ride to the University. That was it! He came into the world with nothing and would leave in exactly the same way, with 2 small exceptions. Truly, material things do not matter in the final hour.

 

The rest of the hospice team arrived to help me through all of the final details. And finally the team from the University arrived, carefully and respectfully loaded him onto the gurney, covered him with a bright blue, stretchy cover and escorted him back to the university lab. For all that it was sad, the process was actually pretty wonderful. I had little to think about and I was comforted to know that he was in good hands, doing exactly what he wanted to do.

 

Later that evening, as my head finally hit the pillow, I had a chance to think about the day. I felt really good about the decision to donate, but…I had this random thought! And…from time to time, I reminisce and wonder about the student who opened the drawer to begin the autopsy. I can’t help but wonder if they thought “hmmmm, naked guy with a bracelet and a beanie baby. I’ll bet there’s a good story here!”

 

In the end, it’s not the material things that matter. I believe it’s how you lived your life, thought of others and made people smile.

Life is like needlepoint…thoughts on perspective

My mom’s mom, my “Grammy” Jean, was an artist. She (front lower right in the yellow shirt) doesn’t look like it here, but in her day, she was an accomplished painter, seamstress, sculptor, knitter and so much more. She also created beautiful, large scale tapestries (think love seats and major wall installations!) in needlepoint. The canvas on the right side of the photo is her interpretation of The Three Wise Men. She often said that all of her brains were located in her fingers! I don’t think that’s exactly true, but she was truly gifted!

When I was young, my gramdmother would patiently try and teach me the fine art of needlepoint. As you might guess, the operative word in the previous sentence is “try”! I’ve never gotten the hang of it! While I’m not great with needlepoint, I am very blessed to have inherited not only her name, but some of her creative talent. I feel very close to her whenever I am in my studio making jewelry.

Anyway….a few years ago, a co-worker gave me a new appreciation for needlepoint! As a metaphor to appreciate the beauty that lies in the trials of life. Cindy is a very devout Christian woman with her own special ministry. To help people understand the big picture, she frames her conversations in the context of needlework. Her theory…when you are the artist, your skill and confidence determine how you approach your project.

Beginners head to the local craft/fabric store and select a kit with an appealing design. The canvas is pre-printed and the yarns, colors, design and very often the tools are all neatly tucked into the package. Assuming the artist has even a modest amount of talent and patience, the finished project is pretty well assured and generally looks beautiful. However, if you’ve ever looked at the back side of a beginner project, you know that the view is less than beautiful. Knots, frayed threads, crossovers, slipped stitches, and more decorate the back of the canvas. Which is why beginners will inevitably head to the local frame shop and have the framer stick a piece of cardboard over the back….to cover it up!

On the other hand, if the artist is accomplished and confident, a pre-printed design is rarely, if ever selected. The artist gets an idea and then selects a blank canvas, the yarns and embellishments which suit the mood. Very often, timing and the yarns dictate the final design and I have seen my grandmother change her mind in the middle of a project! Only the most confident can do that and have it turn out to be anything in the end!! But even the most accomplished needlework artist still has her (his…my Great Uncle Ken did exquisite counted cross stitch!) knots, frayed threads and less than perfect stitches. Instead of leaving and covering up the imperfections, they will patiently work until the back is almost as beautiful as the front. There are still knots, but they are usually small and work into the grand design. The artist may even share the story of how the knot came to be and how she worked through it.

I believe in God. And this will sound presumptive, but I’m pretty sure God took needlepoint lessons from my grandmother! Here’s the tie-in. We – as humans – are threads in one really big, gigantic tapestry and God is an accomplished and very confident artist. God does not need a pre-printed design, He ultimately knows the design for each of our lives. I, like Cindy believe that He knows exactly the colors (situations) and threads (people) to be used in the design for each of our lives.
Seriously….take a minute to think about this! He knows the joys and the sadness, the circumstances, the pain, the reactions….everything. Each and every person you come into contact with is a thread in your tapestry. Some are around briefly and add an accent. Some are in your life for a while, fall away and come back to fill in another part of the canvas. Others are in your life longer and create part of the focal design. Still others form the borders or add special embellishments. Each circumstance brings you into contact with more people (threads) for your special design. And you….are a thread in the lives of everyone you know or have come in contact with. (Kinda takes your breath away there for a minute!?)

As we make choices, we potentially change the design. Yet He works with us to weave an incredibly beautiful, rich, colorful, tapestry that we each call a life. He directs the path, and is responsible for some of the knots and slipped stitches. But I believe that He is a patient artist and works to minimize the impact. But there are times, very often through our own choices and actions, that we are the ones creating the knots and loose stitches of our lives. We can work patiently to work through the knots or we can become frustrated and tie them ever tighter. We can turn to Him and count on his perspective to help ease the bumps and crossovers. We can learn to appreciate the beauty of the process or choose to look for something to cover up what we don’t want seen.

To Him, it is all part of the grand design and it is completely beautiful….knots and all! To us…maybe not so much! I’ve come to believe the difference is perspective. He is always looking at the front of the canvas and we are looking at the back! What if we changed our perspective?

Laughter is good medicine…

One of the more interesting symptoms of bulbar onset ALS is excessive/uncontrolled laughter and crying. We used to joke that the bouts of laughing and crying were kind of like the weather. You just need to be a little patient and the storm will pass.

I remember one particular incident where something got Bill laughing and then he couldn’t stop. He was standing at the kitchen sink and I watched helplessly as he just “slid” down the cabinets to land in a pool of laughter on the floor. Fortunately, at least on this occasion, he didn’t hurt himself! I jumped up and got behind him, to lift him safely as he’d carefully taught all of his caregivers. Only…his legs were not in a cooperative mood. I’d get him about half way to standing and he’d start laughing again, melting any bit of strength in his legs. After 3 attempts, I realized that until the lauughing passed, we didn’t have a prayer of getting him vertical again.

So…we managed to get him propped up in a corner, leaning against the cupboards. I grabbed a glass of wine for each of us and pulled up a seat on the floor right beside him. You can get a very interesting perspective on life and your housekeeping skills from this vantage point! The dogs must have thought we’d lost it, but decided to join us as well. What a site! We enjoyed the wine and talked about a lot of different things that night. The laughter ran its course in about 30 minutes and once he was back in control, we were able to get him safely standing again. We were back to “business as usual”. I’ve often joked that my life is “The Truman Show” and this was definitely one of the funnier episodes!

Lessons learned:
1) Life is about falling….Living is about getting back up!
2) Laughter is good. Too much laughter is not so good.
3) Take the time to laugh and enjoy the moment…don’t fight it – join it!
4) Hire a housekeeper!

The Project Gift Box

Organizing yourself and friends to help with caregiving.

Asking for help is a very difficult task. I’m not certain why, but I suspect it is because we, as Americans, are such rugged individualists….we just don’t need any help. As mentioned in previous postings, I am a true believer that it takes a village to care for an ALS patient. I was discussing this with some friends recently and came up with a possible solution – a way to turn the “gift” of time and service into something that we can intellectually accept with grace. When you think about it, if someone you cared about took the time to wrap up a small gift and gave it to you, you wouldn’t turn it down. You would thank them immediately, unwrap it, oohh and aahh, and then probably send a thank you note. Here are suggestions for creating your own “Project Gift Box”.

• Find a box with a lid
• Go all out and decorate it to your hearts desire! Wrap the box and the lid separately.
• Find 4 – 5 different colors of paper – Medium sized PostIt squares are the perfect size!
• Colors correspond the the amount of time which can be donated for any given offer (i.e. 15 – 30 min., 30 – 60 min., 1 -2 hours, 3+ hours)
  
• Tape one slip of each color with the time allotment to the inside of the lid (to help you remember!)
  
• Think about the projects around your household that can be shared/delegated (see suggestions below)
• Jot each project onto a colored slip of paper and add it to the decorated box.
• When someone asks “What can I do to help you?”, ask them how much time they have to “gift you” and then ask them to pull out a colored slip from your gift box.

There are chores that only you can do. But the list of chores to be done (and it doesn’t really matter by whom!) is endless and limited only by your imagination and willingness to let your friends and family help you. Trust me…friends will truly be grateful for the opportunity to help with your caregiving responsibilities. Here are some distinct project ideas to get you started. Share your ideas and successes by responding to this post!

• change the bed linens
• fold clean laundry
• assemble a grocery list (look in the cupboards and learn the specific brands you prefer)
• go grocery shopping
• put away groceries
• pull weeds
• read to a patient or a restless toddler
• help with homework
• walk the dog(s)
• clean the catbox, hamster cage, rabbit hutch, bird cage, goldfish bowl, etc.
• empty the diswasher
• clean the toilet(s)
• mow the lawn
• take the car to the carwash
• follow you to the dealership/repair shop for auto servicing
• drop off a bank deposit
• plant flowers/veggies
• clean the pool
• run the vacuumn
• rake leaves
• clean gutters
• carpool kids to school, soccer, dance lessons, etc.
• collect the trash/recycling
• pick up a prescription, dry cleaning
• return library books, video rentals
• shovel snow
• hose off window screens

Get Strong Today!

Do not wait as long as I did!!! Find 45 minutes a day and get to Curves® if you are a woman or the YMCA if you are a man. There are lots of things you can do at home, but it is my opinion that you need a program, the equipment and the coaching to give you muscle strength quickly. Both Curves and the Y fit the bill. If your PALS is still reasonably self-sufficient (they can manage by themselves for 45 -60 minutes) get signed up and get going – every day. If necessary, get someone to stay with them for an hour. Whatever it takes…you will absolutely, positively need muscle strength to manage your PALS as they lose muscle capability. When you say “I’ve got you….don’t worry”…make sure you’ve got a muscle (or three) to back it up!

Family…a new definition

Family isn’t just about biology. Family and friends come in all sizes, shapes, colors, skill sets, dispositions, geographical locations, and more. To list my “family”, would require a very long list! I thank my lucky stars for all of the everyday angels God has sent my way….you all know who you are!!! Please know that you have my humblest thanks for all that you have done for Bill and me, and continue to do for many others…every day. I would like to publicy thank the ALS clinic and the Memory & Aging teams at UCSF for their friendship, skill and their (collective!) outstanding bedside manner. The Kaiser Permanente angels include Will North, David Fields, Carolyn & Fran, Jolene, Anita and Emmy. Danijela, thank you for referring us to the university’s Willed Body Program.

It pays to get your legal/financial house in order and the peace of mind is worth every dime you invest. Thank you Steven & Joelle, and Henry & Jean.

Some days it’s an effort to get out of bed, put one foot in front of the other and just get on with the business of “getting on”. Terri, Janey, Phil, Chris, Teri, Tom, Patti, Sherri, Diane, Nancy,Howard, Howard, Flo, Michelle, Tom, Donna, Matt, and Julia are just a few of the angels who daily came to lift us up and carry us through the day.

If you’re lucky, you have friends who just seem to know what you need, when you need it and aren’t afraid to step in when it’s not so easy to do just that. I have been truly blessed by your friendship, humor and grace.

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!