URGENT! Please contact your representatives in Washington today... Medicare policies need to change.

Please take a few moments and send the following letter to your representatives in Washington. This is a critical issue that needs to be acted upon immediately.

Dear Honorable Senator Hirono,

 

You have said over and over that you are against cutting Medicare, that you are willing to do everything to fight for the disabled and the senior citizens that depend upon this program. This is now the time for you to prove that you are willing to stand up for the most folder vulnerable Medicare beneficiaries – the disabled that need assistive communication devices.

Please sign the letter “Ensure ALS Patients Retain Access to Critical Communication Tools; Join letter to CMS urging clarification of recent Speech Generating Device policies.” The letter will be open for only a short time; you must sign-on by Friday, September 5, 2014. It is currently sponsored by Honorable Member of Congress Cynthia McMorris-Rodgers, Honorable Member of Congress John Tierney, Honorable Member of Congress Erik Paulsen and the Honorable Senator Collins. Please contact these Representatives and Senators, your colleagues, and support them with this very important legislation.

New Medicare policies severely restrict access to assistive communication devices used by people with ALS (Lou Gehrig’s Disease), Cerebral Palsy, Muscular Dystrophy, Rett Syndrome, spinal cord injuries, spinal muscular atrophy and other impairments. The following three policies are summarized below:

Capped Rental: As of April 1, 2014, Medicare implemented a policy that will begin denying payment for many of the medically necessary speech generating devices (SGD’s) used while staying at a skilled nursing home or hospice.

Unlocked Devices: Effective December 1, 2014, many severely disabled individuals will lose the ability to access SGD functionalities that provide them with the opportunity to communicate outside the patient’s home. Medicare has stated that it will not allow individuals using Medicare-provided speech generating devices to use their own funds to "unlock" the devices. As of December 1st, Medicare will no longer pay for any device that has even the potential to be unlocked to allow communication that is not face-to-face interaction with other individuals directly in front of device.

Eye-gaze Access: Currently, Medicare has been routinely denying coverage of critical eye-gaze technology for many SGD-eligible beneficiaries. This access method is the only point of access to operate speech generating devices for some individuals, including those with ALS.

We need you to speak up for those who can’t and we need quick action to stop these devastating changes from impacting patients who are in desperate need of access to speech generating devices. Thank you very much for taking the necessary action to stop these new restrictive Medicare policies.

Sincerely,

Richard Raker

Honolulu, Hawaii

Locked-in, but connected...

Today, a Facebook friend, someone I have physically never met, posted a video of her taking the ALS Ice Bucket Challenge. She dedicated the cold plunge to me and her mother, who had struggled with the disease. Watching the video brought a smile to my face and a surge to my heart. I felt the ice water flowing over me, but it wasn't cold, it wasn't uncomfortable – it felt good. I felt alive. I felt connected to this friend, to this person that I have never met, but that took the time out of her busy life to do this for me and for the other souls living with ALS. Thank you, Karen Klaus.

https://www.facebook.com/karen.klaus.16/posts/10203985094403984

This experience, viewed through the screen of my laptop, made me realize that even though I cannot travel freely from my hospital bed, in my small but comfortable room, I can still connect with the world. I am lucky to be alive during this time, the 21^st century, with computers, Internet, social media, email, technology – sitting here, with just my computer, headset and speech recognition software (Dragon), there is so much I can do. There are countless ways for me to connect with others – to learn, to share, to feel alive and participate in society. It really is amazing.

Two weeks ago, another Facebook friend, Shy Tuna, and his brother stopped by my apartment to visit. Again, we had never met. But, Shy, suffers from ALS and he was here on vacation, so we arranged for a quick visit. It was wonderful to meet – To make the personal, physical connection, with someone I had only known through my computer screen. It made the fact that we can truly connect with people through the Internet come alive. It was a great visit. We both agreed that there is a special empathic bond between people that have ALS, or other tragic diseases... 21^st century technology is just a tool to facilitate the bond, the connection. It overwhelms me to think about all of the people who have reached out, who have given their words, thoughts, prayers and precious time to make my day brighter. Thank you, Shy Tuna, for helping me realize that fact.

https://www.facebook.com/#!/shy.tuna.7

Most of you know that I have written several books and publish them on Amazon.com. There's another wonderful example of how 21^st-century technology has allowed me to connect with the world, to be productive, and to make some limited contributions to the human experience. It completely thrills me to think that someone I've never met is able to read and enjoy the story that I have written.

http://www.amazon.com/R.-K.-Raker/e/B00501DBDM/ref=sr_ntt_srch_lnk_1?qid=1408494086&sr=8-1

What's even more interesting, is that I have met another aspiring author, Karen Watson, living far away in Montana through the online Gotham Writers Workshop – and we have started to collaborate on a novel together. We're both very interested in the Native American experience, so when Karen suggested we try to write a book about the tragedy of the US government sponsored Indian Boarding Schools, I was ready and willing. We do all of our writing collaboration through email. It's a long process, but I believe we will have a wonderful book to share when it is completed.

Here, I communicate with all of you through this blog and through Facebook. Just how amazing, fantastic, wonderful this really is... It's hard to believe. It's easy to accept and just move on – take this gift of technology for granted. You might do so, because you can stand up and walk out the door. You can still go outside and feel the sunshine, smell the green grass. You can walk up to a stranger, say hello and shake hands, or even give a good friend a great big hug – please do these things. Make full use of your physicality, make full use of the technology available to us – be grateful for these things.

Scarlett's Fire – coming soon!

This is the artwork does I will probably use for the cover of "Scarlett's Fire". Thanks so much to my friend Bradley for the lovely work... "Scarlett's Fire" is a science fiction story, about a gigantic Kraken from the planet Corydon that is rescued by a Red and White Banded Cleaner Shrimp, named Scarlett. Scarlett works for the Intergalactic Zoological Preservation Society. Their mission is to save species throughout the universe that are under the threat of extinction. Scarlett and the Corydonian giant begin a very unique friendship while they are traveling to the Corydonian's new world. They have much to learn from each other.

Seeking a good literary agent

Dear prospective literary agent,

I have ALS, but that's not the reason you should read this inquiry or consider taking me on as one of your authors. However, it is the overwhelming force has shaped my life and my writing for the last eight years. It's where I have to start if we are to develop a mutually satisfying and beneficial relationship.

Before I was diagnosed with ALS, I defined myself as a teacher, corporate trainer, father, husband, son and friend. Within two years, I was bedridden and dependent upon a ventilator. Completely paralyzed from the neck down, I struggled to keep myself busy, to fight off depression. I began writing using speech recognition software.

I wrote the obligatory memoir and then a fantasy novel, Dolphins Dance, describing my vision of the end of my life and my reincarnation as a dolphin. I self published both books. I thought they were decent, and the encouragement I received from friends and family spurred me to continue. Writing, 4 to 5 hours every day, became my therapy. I began to realize that even though I was physically confined my imagination was limitless. Telling stories gives me an escape route from the locked-in reality I face every day. Through writing, I still travel the universe and meet interesting situations and characters that entertain me. Now, ALS does not define me— I've begun to call myself an author.

Since 2011, using Amazon's Kindle Direct Publishing and Createspace, I have self-published six novels, a novella, a short story, a memoir, and three volumes of a story that I will eventually combine into a novel.

Why the rush? You might be asking. I really can't explain why I've been so prolific, except to say that being productive, and taking my imagination from ideas in my head to printed words on the page has been immensely satisfying. I've allowed myself the freedom to write without worrying about the business of publishing. The explosion of self-publishing tools and technology over the last several years has given me the platform to see my creations become a reality.

This is the first inquiry letter I have written—Why now?

I believe that my writing has evolved to the point where it can be successfully shared with a broader audience. The financial reality associated with living with a terminal illness has forced me into considering alternative sources of supplemental income. I am ready to slow down, to accept constructive criticism, to revise and rewrite.

I realize that this is probably not your usual inquiry letter. Perhaps that's a good thing, but I would like to sincerely say that if you find my writing engaging and worthy of consideration, I am ready for guidance and a fruitful partnership.

Sincerely,

RK Raker