Thoughts about golf

Golf was always a wonderful hobby for me. I started to play when I was just 12 years old. For many years I played two or three times a month with my college buddy, Bob. These days I don't get to play, but he sends me pictures from the golf course. I thought I would share two of the recent photos.

Sometimes late at night, I visualize myself on the golf course. I play every hole, every shot. Its amazing that my memory of the golf course is so clear. Even though I can not physically be there, I am there in my mind.

These Hands

These hands served me well for fifty years, now they rest.

They are done grasping, twisting, pulling, pushing, and touching.

I'm grateful for all that they have done for me.

They have been my constant instrument. They have not left my side.

They did their work without complaint or fear.

They are done pinching, poking, clapping, tickling, and scratching.

Now they rest.  

Update from Rick

Dear Friends, The View From My Window Is Still Lovely. However, I must apologize for not communicating These days… My correspondence by email Has been short, I have neglected my blog, I have stopped seeing visitors. This has that not been by choice. I have lost the ability to control my computer by my voice. My conversation ability is mostly just single word answers. Very frustrating, but recently my insurance coverage approved the pc eye go! This will let me control my computer with eye gaze. This is great technology, but will take some time to master. I am very grateful to have it. Very grateful for all of the support and prayers from my friends and caregivers. This is just another part of my journey. I've got so much to be thankful for, so much to look forward too.

Scarlett's Fire updates

Scarlett's Fire update:

Print copies sold = 53

Kindle versions sold = 7

Kindle versions Amazon Prime free promotion = 54

Scarlett's Fire also has received 2 great five-star reviews on Amazon. Thank you all for your support!

Results from the Writers' Digest contest for The Scent of Ginger

This year I submitted my book, "The Scent of Ginger" to the 22nd Annual Writer’s Digest Self-Published Book Awards. I didn't win the contest, but received some nice feedback.

Judge Number: 30

Entry Category: Genre Fiction

Books are evaluated on a scale of 1 to 5, with 1 meaning “needs improvement” and 5 meaning “outstanding”. This scale is strictly to provide a point of reference, it is not a cumulative score and does not reflect ranking.

Structure, Organization, and Pacing: 5

Spelling, Punctuation, and Grammar: 5

Production Quality and Cover Design: 5

Plot and Story Appeal: 5

Character Appeal and Development: 5

Voice and Writing Style: 5

Commentary*:

THE SCENT OF GINGER by R.K. Raker is a superb novel for readers looking for an intriguing story set in the beauty of Hawaii.

The cover is lovely. The back cover is a bit crowded, but the patient reader will be rewarded by finding out about the story. I found the author's photo and story completely inspiring. How wonderful that he has discovered such talent in adversity!

I was drawn into the story right away. I have visited three of the Hawaiian Islands, so the setting holds a special place in my heart. I really enjoy reading about Hawaii, and I think readers who don't know anything about Hawaii will find the book appealing as well. This is a story where the setting takes on increased importance since it's exotic, yet the author shows how much he loves the setting without bogging down the story with minutia. I like that the setting adds to, rather than takes away from the book.

The author does a great job in keeping the reader abreast of the new terms quickly and with no muss or fuss. I like that the definitions are at the bottom of the pages instead of in a glossary. The characters are realistic, the plot is intriguing, and the story uplifting. I am so glad this author has found an outlet in writing. The world is better for his talent.

Living within the yes/no world

It was a warm, humid, no wind October afternoon in Honolulu, Hawaii.

"Do you want the window open or the air conditioner on?" She asked.

"Yes," I answered.

"You want the air conditioner?"

"No."

"Would you like the window opened?"

"No."

"Okay then, let's turn on the fan..."

"No."

"What DO you want?" She was quite perturbed by now.

"Both." I managed.

"You want the fan, the air conditioner, and the window?"

"Yes," I answered, trying to smile, even though I could care less about the fan.

"Great, is that everything?" She said, visibly relieved, a little bit confused.

"Yes," I responded, even though there were 10 other things that I wanted—

She opened the window, turned on the air conditioner and the fan, and then she gave me the hug that I was hoping for... So goes my life living in a yes/no world.

The horrible reality of ALS is that you get to watch (live through) the progression of the disease. For some, the negative progression is faster. For me, it has been relatively slow and steady the last eight years. My brain stopped communicating with my muscles, first the legs, the arms, and then the fingers until I reached my current frozen state. I started with shortness of breath, moved to using a BiPAP machine several hours a day, to finally complete dependence on my Trilogy ventilator. I progressed from delicious plate lunches, to soft foods, to find myself now receiving all of my nutrition through a stomach tube. Through all of this, I was blessed to have my voice stay strong, but now, that is also beginning to succumb to the relentless downward progression.

Over the years, while everything else became weaker, my breath has worked well with my vocal cords allowing me to have meaningful conversations with my family, friends and caregivers. Those of you who know me personally remember my LOUD voice. It stayed with me for a long time. I was able to control my computer with speech recognition software, Dragon, and continued to stay connected through the Internet. I spent four or five hours each day surfing cyberspace, listening to music, and writing. The words, phrases, sentences, paragraphs, pages, chapters, and stories appeared on the blank screen with ease. Unfortunately, that ability has started to fade.

These days, I struggle to get even the simplest phrase on to the page. Short blog posts like this take several days to compose. Speaking on the Telephone is impossible. Face to face conversation is difficult—I can just manage short phrase answers or responses. I have had to request the people that are closest to me to refrain from using multiple-choice or open-ended questions. To be patient with my slow, soft responses. I am still here with you. I am interested, and I still want to communicate, to converse... The loss of my ability to have free flow speech is very difficult to accept, but even though it's against my nature, I am doing my best to live within this "yes/no short answer world."

Medicare policies restrict access to Speech and Communication devices

This past August I sent letters to all of Hawaii's Representatives asking them to contact Medicare and investigate the restrictive policies around Speech and Communication devices (read my original letter). Patients with ALS and other severe disabilities are being denied access to the durable medical equipment that is necessary for them to communicate with their caregivers, families and friends. So far, only Representative TULSI GABBARD has responded. Her message to me is below:

Thank you for contacting me about recent policies proposed by the Centers for Medicare and Medicaid Services (CMS) on Medicare beneficiary access to Speech Generating Devices (SGDs) and SGD accessories.  I share your concerns about these policies and have contacted CMS about the problems with their rules.

As you may know, CMS currently covers medically necessary SGDs as part of the Medicare durable medical equipment benefit.  Patients who utilize SGDs include Medicare beneficiaries living with a range of severe neurological and communication disabilities related to conditions such as amyotrophic lateral sclerosis (ALS), cerebral palsy, multiple sclerosis, Parkinson's disease, brain stem stroke, locked-in syndrome, and traumatic brain injury.

Over the course of the last year, CMS has made significant changes that make patient access to this technology more difficult.  Patients who utilize SGDs are some of Medicare's most vulnerable, and throwing up obstacles to SGDs only serve to make handling these debilitating conditions more painful.  Moreover, because of the prognosis of these patients, access to these communication devices is an immediate concern and many do not have the time to go through a lengthy appeals process.  As a result, I joined with other House colleagues to request information to better understand CMS's rationale and to identify some quick solutions that will address the needs of these patients while maintaining the integrity of the Medicare program.

We cannot take away a patient's only option for communicating with caregivers, friends, and family.  You can be assured I will continue to monitor CMS's consideration of these policies and the availability of SGDs.  Again, mahalo for taking the time to get in touch with me.

Sincerely,

TULSI GABBARD

Member of Congress

 

It's Not too late for you to write to your legislators. Please, take action. Send a message to your representatives asking them to investigate this issue!