Written testimony to the Hawaii legislature, HR 68

Subject: TESTIMONY IN STRONG SUPPORT OF HR 68, HD1 Proposed.

Date: Wednesday, April 02, 2014, 9:00a.m.

Room: Hawai’i State Legislature Conference Room 329

To: The House of Representatives Committee on Health

Rep. Della Au Belatti, Chair
Rep. Dee Morikawa, Vice Chair
Rep. Mele Carroll
Rep. Richard Creagan
Rep. Mark J. Hashem
Rep. Jo Jordan
Rep. Bertrand Kobayashi
Rep. Marcus R. Oshiro
Rep. Justin Woodson
Rep. Lauren Kealohilani Matsumoto

Measure Title: HR 68, Proposed HD1: Requesting the Auditor to assess the social and financial effects of requiring health insurers to provide coverage for brain injury.

Proposed HD1: Urging community awareness of Amyotrophic Lateral Sclerosis, also known as ALS or Lou Gehrig’s Disease, and community support for finding a cure for ALS and the provision of assistance to ALS patients.

My name is Richard K Raker. I am a longtime resident of Honolulu, Hawaii. I have been living with ALS for the last eight years. I am submitting testimony in strong support of HR 68, Proposed HD1 because I understand firsthand how difficult it is for the patient, the family and the caregivers, to cope with the daily struggles of this disease.

Imagine being frozen in your body, unable to move anything but your eyes. You cannot speak, you cannot eat, you get nutrition through a tube in your stomach, you need a ventilator to breathe, and you spend most of your hours/days in a hospital bed. You are completely dependent on others. You rely on your caregivers and family to do everything for you.

But, let me start at the beginning. You felt sick, lethargic and weak for almost 6 months before you were finally admitted into the hospital. Your primary care physician had no idea what was wrong. It took 10 days of testing by specialists to determine the diagnosis. When you first heard the words "ALS – Lou Gehrig's disease," you knew nothing about it, except that it was named after a famous baseball player. When the neurologists gave you the news, and handed you a printed page from a website, that you had a terminal illness and that statistically you only had 3 to 5 years to live, you reacted with disbelief, prayer and courage. "I feel okay, I can beat this."

Within a year, all of your motor neurons had started to shut down. Your muscles began to atrophy. You fell down the stairs several times. You couldn't lift yourself off the toilet. You couldn't drive anymore. You had to stop working. Your children could not rely on you to take them to school or soccer practice. Your wife continued to work, as well as care for you, but your physical condition had worsened to the point that you could no longer be left alone. Expensive paid caregivers, not covered by medical insurance, were needed. The medical bills started to grow. Equipment needed to be purchased, or rented. Insurance only covers so much... Durable Medical Equipment is expensive. With one income, you could not make your mortgage payments and keep up with the medical bills. You started to tap into your 401(k) plan and retirement savings. You had to sell your house and move into an apartment. Then, sadly, you couldn't breathe on your own. And so the disease progresses...

The above does not match my particular progression/situation exactly, though most of it is true. I've been lucky. I can still speak. I use speech recognition software to control my computer and send this testimony to you. I have Long Term Disability and Social Security income, decent medical insurance along with Medicare. I have a wonderful family, competent caregivers, good friends, and the support of the MDA, and the local Hawaii ALS Support Group. I'm grateful. I'm surviving – eight years now. I try to remain positive, still, the difficulties remain. I worry about the future, when my LTD and medical insurance expire. I wonder how long I can continue to be a financial and emotional burden on my family.

ALS is a relatively rare disease that most people have never heard of. Even my doctors, who are extremely compassionate and competent, had had little experience with the disease. Increasing public and private awareness of the disease can help organizations like the MDA, and local and national ALS organizations, raise funds for research, treatment, and direct support to patients and their families. There are so many competing diseases out there – cancer, Alzheimer's, diabetes, etc. – ALS, because it occurs relatively infrequently in the overall population of Americans, is often overlooked. Please help by declaring that the Hawaii State Legislature is in favor of promoting awareness of the disease, and that you support research funding to find a cure and treatment.

But, I challenge you to do more. Are there other creative things that you can do to help support ALS patients and their families?

Thank you for hearing this measure and for the opportunity to express my strong support of HR 68, HD1 Proposed.

Sincerely,

Richard K Raker

6095 page views!

I'm thrilled to say that this blog reached a total of over 6000 page views this week! (That's since I started in 2010 – I'm averaging about 500 page views per month since late last year, which is great!)
I'm really honored and grateful to all of you that have supported me in my efforts to write. The blog is a very important outlet for me, allowing me to develop my voice with short essays and thoughts. Each post is a wonderful diversion from the more difficult and demanding task of writing novels. I believe that the blog is an important part of my "platform" – something literary agents say every aspiring author needs in order to be noticed in the very competitive world of publishing. Yes, as time continues to bless me with life, I have become more serious about this therapeutic endeavor of writing. As my storytelling improves, I hope to reach a wider audience. Please help me to expand this platform by "joining" as a follower and sharing with your friends. Thank you.

A letter to my elected officials in Washington regarding Medicare

Dear President Obama,

It's hard enough to have to struggle to live with a disease like ALS without having the frustration of dealing with insurance companies, health care provider organizations and medical device suppliers. In my experience over the last seven years, I have found that these companies are huge bureaucracies with little empathy for the patient or caregiver. The doctors and nurses are wonderful and caring—it's the organizations that are failing.

When you need help at the most vulnerable time, it's impossible to get coordinated care, direct answers and decent service. The main purpose of the person on the other end of the line, or e-mail trail, seems to be to complete their own paperwork or obligations for their job. After all, they must be able to meet the regulations forced upon them by insurance companies, Medicare and Medicaid in order to be paid. The patient's welfare is secondary.

My fear is that the Affordable Care Act is adding to this confusion and bureaucracy. One size does not fit all when it comes to patient care. I would like to share two personal examples with you in order to make my point.

First, I've been using a ventilator to breathe for the last six years. Without it, I would not survive. For the first three years, I used a simple BiPAP machine, often used for sleep apnea or other sleep disorders. About three years ago, my doctor was able to upgrade me to a better performing, safer, ventilator made by Resperonics (Trilogy 100). It's made a wonderful difference in my life, and I believe has been a strong factor in my survival. I was diagnosed with ALS in 2006. Most ALS patients perish within 3 to 5 years, I'm still here. My concern is the outrageous cost for this machine.

The medical supplier, Apria, bills Medicare over $4000 per month for the rental of this machine. Medicare cuts this down to an eligible charge of about $2500 per month. Medicare pays its 80%. I am left with a monthly bill of about $400 per month—this is a huge bill for my family to pay. At this rate, we will deplete all of my retirement savings in just a few years. I have been looking for supplemental insurance to cover some of this durable medical equipment cost, but most insurance plans do not. I'm still looking.

A quick search online and I found that the average price for a brand-new Trilogy 100 is about $12,000. If Apria is collecting about $2000 per month from Medicare, and an additional $400 per month from me, it seems to me that within six or seven months they recouped the entire cost for purchasing the machine. I understand that they are in business to make money. They do service the machine, though their quality of service is quite poor—a person comes every three months to check the machine and do some paperwork. According to my calculations, Apria will benefit greatly if I continue to live and they continue to collect these high rental fees.

The ventilator does not fall under the Medicare rule that once the equipment rental has surpassed the cost of the machine/equipment it becomes the property of the patient.

Does this seem fair to you? Doesn't it seem like the medical supplier is making an out of proportion profit in this situation? Shouldn't ventilators be eligible for the same patient purchase rule once the rental fees have paid for the machine? Once the medical supplier has recouped the cost of the machine, should not the monthly charge to Medicare be reduced? Shouldn't there be some consideration given to patients with long-term illnesses and the rental of expensive life-saving equipment? 

Secondly, I have been trying for almost a year now to get my hospital bed mattress replaced. When I first received the hospital bed, the mattress that came with it could not support my 200-pound body. According to Medicare rules, I was not obese enough to qualify for the more supportive mattress, but my doctors were able to get me a very good mattress with memory foam that supported me very well and was also designed to prevent bed sores—this was four years ago.

I was very grateful for the mattress, especially since I spend most of my time in bed. For the first three years, I was able to exchange the mattress for a new one each calendar year without any problems. I have had no bedsores!

Late last year, when I tried to get a replacement mattress we were denied. My doctor tried valiantly to work with my insurance provider, Medicare and the medical equipment supplier. The answer that we received is that Medicare rules have changed. Medicare will no longer pay for replacement mattresses. I was also told that according to Medicare guidelines, even if replacement mattresses were allowed, I am Not eligible for this same type of mattress—one that prevents bedsores. In order to get this type of preventative mattress, I must already have bedsores! Does this make sense to you? Shouldn't the idea be to prevent bedsores in the first place?

My current mattress is now starting to sag, it's getting old. It's starting to become uncomfortable, causing some back pain and I'm afraid bedsores are coming next. We have decided to purchase the $300 mattress ourselves. I know this doesn't seem like a lot, but it is to my family in our current situation.

Why was there this sudden change to the Medicare rules? Shouldn't there be some allowable co-pay for replacement mattresses? Shouldn't there be some consideration for patients with long-term illnesses?

I apologize for the length of this letter. I had a lot of frustration to get off my chest. I believe that the only thing we, as American citizens, can do is raise our voices and fight for better service when we can. If we have the option, then switch providers, but there's no guarantee it will be any better somewhere else.

I firmly believe in the principles of the "Affordable Care Act" and I applaud you for your efforts to help millions of Americans get health care. However, I have little faith that the new system will make any real difference to the high cost of care, poor customer service, the lack of individualized patient-centered care, and the complex and convoluted billing practices.

I ask you, to ask Congress to take a close look at Medicare, Medicaid and the Affordable Care Act rules and regulations, and whenever possible consider the impact on individual patients. Please strive to make our health care system fair and equitable to all.

Where's Dolphins Dance, Second edition?

Where is Dolphins Dance?

Dolphins Dance, Second Edition is taking a long time for several reasons.

First, I think it's because I'm in a very relaxed, comfortable, state of mind and body at the moment. I have posted that my wife no longer works full-time, so these days she's my full-time caregiver. This has helped my mental and physical health considerably. It's hard to quantify or describe, but it makes a difference to my writing style and process.

I'm not as rushed. I take more time looking over the words, the phrases, the sentences and the overall structure of the scene that I'm working on. I think that before, when she went to work every day and she constantly worked late into the night, and I had a variety of caregivers – some good, some not – take care of me, I would write five or six hours a day just to escape my world. I forced myself to write because it was a way to escape reality, my disease, my anxiety, my fear of death, my stress, my depression, etc.

So, in some sense, the stress of our situation over the last several years has been good – there may be a "silver lining" after all. I self-published twelve stories in four years, and I have at least three or four partially completed stories in my "get to later" folder. I just rushed to get them done, to develop my voice, to learn the craft, to see the completed project, and to feel a sense of value and accomplishment.

I'm sure I could go back now and rewrite each of them – I may, or may not.

Dolphin's Dance was my first fiction novel – while my memoir, A Remarkable Life, lived by an ordinary person, about the first 25 years of my life, was my first self-published work, both were written in 2010. The dolphin story was foolishly published with a vanity press company, PublishAmerica. I told you about this mistake before.

Anyway, so now, going back, I feel like the story is quite good, but the writing style, grammar, voice – well, I'm a much different writer now than I was five years ago. I've learned a lot. I think I've improved. I'm a better writer...I'm enjoying fleshing out the story, adding description and changing language. I don't feel rushed. I don't feel anxious or afraid. I feel like a real, well almost, real author (there's always doubt).

Writing is still therapeutic, it's still a form of escape, but it's not a necessary form of escape like it used to be. I write stories because I want to, not because I have to.

"How are you doing?"

Before you read further, please take a moment to remember the tragedy of the March 11, 2011 tsunami that hit Japan. Please pray for the lives that were lost and the families that are still recovering.

 

I was asked a common question via e-mail, rather pointedly, the other day:

How are you doing?  I guess in your landscape when I ask this it has to mean:  "Are you coping well with all things in your limited environment of little movement and little change in scene?"  By comparison, now, I see what luxury I have.  So, what does the spirit say to you about how things are going for you?

I answered, so you ask, "How I am doing?" with a dose of empathy that I rarely encounter. Thank you for understanding the true depths of your question. In answer, I must say, rather well, considering my circumstances.

It's amazing that I have remained in this bed twenty-four hours a day–seven days a week, for more than four years, looking at the same objects, the same landscape as you call it, without going into deep depression. I'm sure the love and care that I have been receiving plays a large part in my well-being, but also, there's the therapeutic aspects of my writing, and some hard to define enhanced sensitivity to my surroundings that spur me to struggle on.

Please indulge me while I engage in these last two activities. Writing these blog posts is part of my therapy, my way of escaping the limited view that I have. I will also attempt to give some cadence to the idea of my new found sensitivity, by describing my current world of vision to you. Seven or eight years ago, prior to ALS, it would have never occurred to me to observe my surroundings with such a focused magnifying glass.

In front of me, my views seems rather cluttered. When I look beyond my computer screen, I can see my television with all of its control boxes, remote controls and wires directly on the dresser in front of my bed. It's not a pretty piece of equipment, nor that meaningful to me, but it does provide hours of entertainment. On either side of the TV, significant paintings and photographs hang on the wall. Precious nickknacks share space on the dresser with the television. I could spend pages describing each object and the memories they contain. Even the smallest item has great meaning to me. Alongside the dresser, there are comfortable chairs and several clusters of pillows of various shapes and sizes that are used to prop up my lackluster body when need be. An African Violet which has lost its lovely purple flowers, but is still growing well, sits on top of a jewelry box.

I like facing forward. I can look at the objects I have described whenever I want to just by opening my eyes. This "looking forward" soothes my spirit, while looking back through the memories some of the objects provoke strengthens my soul.

I have to think very carefully to remember what's behind me. I can't turn my head as you know. I can only see as far as my peripheral vision will allow. Yet, I know my ventilator is there, I can hear it gently pushing air to my lungs. I also know there's a table cluttered with medical stuff that I require, a nightstand with a lamp, a phone and a digital clock. I know there's a framed poster by Gion Mili on the wall, behind me to my right—a black couple doing the jitterbug. I purchased it long ago when I visited the International Museum of Photography in New York City. Just above my bed is a painting by my mother. A river scene—it is one of my favorites by her, though not one of her best. The river is large in the foreground, I follow it as it narrows and disappears into the horizon. To me it represents a focused journey through another landscape. Behind me to the left, is a standing lamp that provides bright white light for the room in the evening, and another nightstand where my emergency ventilator presides—we haven't tested it in a while.

I remember all of these things behind me, even though they are not in my direct field of vision, because I look at them very closely when I get into my Hoyer lift to go to the toilet or transfer to my wheelchair. Whenever I have the luxury of changing my position in this physical world, I look at everything very intensely, much more deeply than I used to.

To my right, there are shelves with papers and books, a fan, the bathroom, and a standing closet where my wife keeps all of our towels, washcloths, and bed sheets. To my left is my window to the outside world, framed by curtains. When I look through the large panes of glass, I can see the buildings in our neighborhood and part of our porch with some plants growing nicely. The windows are clean with only a few visible spots of dirt left over from the rain over the weekend (my son cleans them for me frequently). There are houses and mountains in the distance, passing clouds and patches of blue sky.

From my bed, I look out the window and wonder about the universe we live in. It's comforting to know there's a world out there, but also disturbing. When my thoughts turn to the natural and man-made tragedies that occur on a daily basis, I'm grateful to be safe and sound within the cocoon of my limited landscape.

It's not raining today. There's a nice Tradewind. It's about 77° at the moment (my computer told me that). It's interesting, but I feel that I am much more in tune with the weather these days, even though I'm not able to go outside at will. I feel the barometric pressure going up and down, I feel the wind, and I can tell the wind direction just by the smell. I feel each small percentage of humidity in the air.

No matter where my body is, I seem to be more sensitive to my surroundings.

The other day my friend, Bob, had me outside rolling about in my wheelchair. It started to rain. He quickly tried to rush me under the building, but I protested. I asked him to let me sit in the rain. Being the great friend that he is, he obliged my request. The rain fell softly, but still I got wet and cold. It was wonderful. My wife scolded me rather severely later that evening.

When was the last time you sat in the rain? When was the last time you thought carefully about your personal landscape?

PLEASE, walk, talk, run, swim, touch, feel, dance, smell, travel and do all of things I cannot do. Take notice of the things that you have overlooked. Be sensitive to your surroundings. Be grateful for all of it.

Let your Spirit embrace the landscape of the world.

Remember the March 11, 2011 earthquake and tsunami in Japan

In remembrance of the March 11, 2011 earthquake and tsunami in Japan, I am once again offering the Kindle version of my short story The Hamster and the Gecko – A Survivors Story for free to Amazon Prime members... Don't forget this tragedy – it is much more than damaged and leaking nuclear power plant. The Hamster and the Gecko offers a different perspective on the disaster – the debris field and the potential damage it has on the health of the ocean.

Below I offer the Preface from the book, to give you an idea of why I decided to write the story: 

I was watching NHK news a few days after the March 11 earthquake and tsunami. The coverage of the tragic and unfolding events in Japan was unprecedented – there had never been so much technology available to record a natural disaster of this magnitude. The raw footage was shocking and the 24-hour media coverage of the aftermath was mesmerizing. Like so many, I was glued to the television – I wanted to look away, but I couldn’t.

An older man was shown walking through the rubble of one of the devastated towns. The camera, of course, was following, waiting for that one shot or one quote that would make the evening news. He walked in a steady fashion – strong Japanese legs carried him through the mud and over the remnants of his neighborhood. We learned that he was a volunteer firefighter who had left his family at home when the tsunami warnings came over the sirens. It was his job to secure the first line of defense near the harbor.

He stopped suddenly and turned towards a house that had been flipped on its side and dumped near a gray stone wall. The reporter shoved a microphone in his face and asked him a question off-camera. Tears welled up in his eyes and his face wrinkled with emotion. With a cracked voice he said, “There is nothing to say.”

The moment hit me so hard. I was stunned and shocked all over again by the enormity of the tragedy. I could feel this man's despair through his silence.

I thought, “Yes, there is nothing that can be said in such a situation,” but somehow, all of us who were not there have to say something. Each one of us has to decide what we can say and how loud and far that voice can go. We have to speak for those who cannot. The following short story is my message of hope – the words are my voice.

The Scent of Ginger – grateful for feedback!

I thought I would share some excellent feedback on The Scent of Ginger from someone I had met in the Gotham Writers Workshop online course that I took last fall. Then, I went to Amazon.com to check my author page, RK Raker author page , and I saw that there are now three reviews! This is wonderful. Getting feedback, getting feedback is great, but getting positive feedback is just thrilling. To those of you who have taken the time to read my books/stories thank you so much! For those of you who have taken the time to read and then to review my work – I'm forever grateful.

Below is what my acquaintance from Gotham wrote:

Overall, I am very impressed at your writing skills. All those details about technology, weapons, the history of Hawaii, the resentment of the natives, etc. shows you know so much. Even though I, the reader, do not need all those technical details to follow your story, however it gives me pleasure to read them. They add to the fabric of your story, making it feel real. As I had said in my comments during our Gotham class, the fact that you have used your experiences with ALS and created a character who is high-tech and kicks ass is both fun and inspiring.

An open letter to my healthcare providers

It's hard enough to have to struggle to live with a disease like ALS without having the frustration of dealing with insurance companies, health care providers and medical device providers. In my experience over the last seven years, I have found that these types of companies are huge bureaucracies with little empathy for the patient or caregiver. When you need help at the most vulnerable time, it's impossible to get coordinated care, direct answers and decent service. The main purpose of the person on the other end of the line, or e-mail trail, seems to be to complete their own paperwork or obligations for their job. After all, they must be able to meet the regulations forced upon them by insurance companies and the US government in order to be paid. The patient's welfare is secondary.

I'm prompted to write this post, this open letter to Kaiser Permanente and Apria, because of today's events and many past frustrations. I have little power against these enormous organizations, and little hope of getting satisfaction or creating change, but my words are my only weapon. I will post this letter on my blog, as well as send copies to the above mentioned organizations.

My letter is divided into two sections, one for each organization. I apologize for the long nature of this post/letter. I have a lot to say...

Kaiser Permanente, Honolulu, Hawaii: I believe full disclosure is necessary here. I used to work for Kaiser. I love the organization. I am very grateful to the doctors and nurses that have cared for me, and that I had the pleasure of working with. I list just a few of the most pertinent complaints that I have – I do not list the boatload of compliments.

When I was first diagnosed with ALS, Kaiser had a program called Palliative Care for which I was eligible. This was an excellent program. It allowed for extensive home care. The program was great for me because I have no ambulatory ability – getting to the clinic was a major expense and hassle. I was eligible for bath services once a week, once a month a nurse came to visit me, and once a quarter a doctor came to my apartment. The focus was on preventive care. The premise was that it was cheaper to keep me healthy at home, rather than having me get sick and be admitted to the hospital. Great program, right? Within a year, the program was canceled. I was offered no other options, except to now go to the clinic for care. I wrote the president of Kaiser Permanente Hawaii a letter supporting the doctors and nurses, the program, and their care. I asked her to consider reinstating the program. I never received a reply.

Last year, my coverage inexplicably changed. I am grateful that I have coverage, but the change was unannounced and quiet upsetting. My primary insurance was changed to Medicare, rather than the Kaiser Permanente employee insurance that I had been using for years. This resulted in a bill of $6000 from the medical device supplier utilized by Kaiser – Apria. Of course, we did not pay this bill, but we did have to make several calls to both organizations to get it straightened out. It created a lot of unnecessary anxiety. Finally, six months later, everything was rectified. Shouldn't Kaiser be required to inform its members when a billing or a coverage change is made?

I have been trying for almost a year now to get my hospital bed mattress replaced. When I first received the hospital bed, the mattress that came with it could not support my 200 pound body. I was not obese enough to qualify for the more supportive mattress, but my doctors were able to get me a very good mattress with memory foam that supported me very well and was also reported to prevent bed sores. Great idea, since I've been spending 24 hours a day in bed for the last four years. I've had no bedsores. The mattress is now starting to sag, it's getting old. I have been trying to get a new/replacement mattress for several months. My doctor has been in helping, but she has not been successful. I've been told that now that I have Medicare as my primary insurance, I am not eligible for this same type of mattress – one that prevents bedsores. In order to get this type of preventative mattress, I must already have bedsores! Does this make sense to you?

Finally, Kaiser, as far as I know only uses one medical equipment/device provider – Apria. This must be cheaper for the organization, but from what I've heard from other patients and from my own experience, Apria has a rather dismal patient satisfaction record. Shouldn't Kaiser allow competition?

Which brings me to the next section.

Apria: I have been using their services for seven years now. I have no compliments for the organization or their staff – only complaints. I will list just a few of them here.

Ordering replacement supplies is a total fiasco with Apria. Every three months, I am eligible for free mask, headgear, hose and filters for my Trilogy Resperonics ventilator. Every three or four months we call to order. Every three or four months the wrong size, model, or piece of equipment arrives in the mail. We have to send it back. We have to call. My caregivers have to give the exact model numbers over and over again. Wouldn't it be nice if they had accurate records of the equipment/supplies we ordered previously? What if Apria automatically sent the supplies every three months without the patient or caregiver calling? I'm sure there's some good reason for not doing that! Or perhaps the Respiratory person that comes every two or three months to do the necessary paperwork for billing purposes, could bring the correct equipment/supplies with him/her, is this too much to ask?

Six months ago the humidifier water chamber to my ventilator broke. We called Apria for a replacement. They explained that they needed a doctor's prescription. We got that after a phone call to my doctor, then we found out that Apria did not have any in stock. They would have to order it. It would take at least six or seven days to arrive. I have extreme difficulty breathing without my humidifier. When I explained this, they had no answer for me. So, my wife called another local medical supplier. They also required a prescription. She made another call to my doctor, he took care of the prescription. She then drove to the local supplier, paid for the humidifier water chamber because they would not accept our insurance. Finally, by the end of the day, I had the humidifier that I needed. Foolishly, I expected the additional chamber from Apria to arrive in a week or so. Four weeks later, nothing had arrived. I called Apria. To my amazement they had not ordered it. I cursed. I got angry over the phone, which is not easy for me to accomplish in my condition. Finally, one of the respiratory persons decided to check – low and behold, there were several humidifier water chambers on the shelf in their office. Needless to say, the next day he delivered the chamber, plus a spare. Is this decent customer service? I don't think so.

Which brings me to today's events and complaints which are still with Apria respiratory equipment services. The respiratory person arrived with a replacement for my Trilogy. This was okay, but a heads up would have been nice. He immediately started to replace my machine and complete his paperwork. My wife asked three times if the machine was exactly the same. Three times he answered, "yes." When my wife took a closer look, the screen was different and some of the options were different. The respiratory guy said, "oh, the software's new. The machine is the same model." Really? Don't you think you should've told us that? She had to ask several questions to get him to show her the differences. Should we consider this a safety issue? I think so... But wait, there's more! As he was leaving, my wife noticed that the indicators for the internal and external batteries were near zero. "Oh, it will take 4 to 6 hours for the batteries to charge," he said. Great, we thought. "What if the power goes out before that?" He had no good answer. He kind of shrugged his shoulders. We suggested that the external battery from the older machine remain with us, he timidly agreed, and switched them out. This was definitely a safety issue!

Finally, I'd like to say something about the respiratory service people – therapist or technicians. Are they therapists or technicians? It never been made clear to me. They never check me, the patient. If they are new to me, they always assume that I have this sleep disorder, called sleep apnea. They have no idea that I have ALS. They try to and shake my hand – ha! They often give vague answers to questions. They never follow up. They have made promises that they do not keep. The focus is always on completing their paperwork. If they are therapists, they are negligent. If they are technicians, they are barely competent. If they are paper pushers, they are doing a great job.

I apologize for the length of this letter. I had a lot of frustration to get off my chest. I feel better now. I believe that the only thing we can do is complain and fight for better service when we can. If we have the option, switch providers, but there's no guarantee it will be any easier somewhere else. I have little faith that the "Affordable Care Act" will make any difference. We just have to be grateful for what we have, which is easy to say, but difficult to feel positive about.

Candid thoughts from a professional bagpipe player

This is a short essay found on the Internet that a friend of mine sent to me...

Time is like a river. You cannot touch the water twice, because the flow that has passed will never pass again. Enjoy every moment of life. As a Bagpiper, I play many gigs. Recently I was asked by a funeral director to play at a graveside service for a homeless man. He had no family or friends, so the service was to be at a pauper's cemetery in the Nova Scotia back country.

As I was not familiar with the backwoods, I got lost and, being a typical man, I didn't stop for directions.

I finally arrived an hour late and saw the funeral guy had evidently gone and the hearse was nowhere in sight. There were only the diggers and crew left and they were eating lunch. I felt badly and apologized to the men for being late. I went to the side of the grave and looked down and the vault lid was already in place. I didn't know what else to do, so I started to play.

The workers put down their lunches and began to gather around. I played out my heart and soul for this man with no family and friends. I played like I've never played before for this homeless man. And as I played "Amazing Grace", the workers began to weep. They wept, I wept, we all wept together. When I finished, I packed up my bagpipes and started for my car. Though my head was hung low, my heart was full.

As I opened the door to my car, I heard one of the workers say, "I never seen nothing like that before and I've been putting in septic tanks for years."

Apparently I'm still lost...