Showing posts with label sma type 2. Show all posts
Showing posts with label sma type 2. Show all posts
Tuesday, November 24, 2009
Into the Impossible...
“The limits of the possible can only be defined by going beyond them into the impossible.” Arthur C. Clarke
Thursday, January 1, 2009
New Year's Update
As some of you know, Keith has had some health issues over the last month. He had an appointment with Dr. Gilbey last week which went well. The doctor confirmed that all his vital signs and test results are in the normal range so he doesn't have any urgent concern about that. He did notice that Keith's concentration was diminished, his speech is less clear and that his general response to questions was slower than it has been before. I gave him a run down of the issues I've noted over the last few weeks including lack of appetite, speaking difficulties and swallowing issues. We did mention that there has been considerable stress which is now abating. He suggested that we observe the status of Keith's physical symptoms for the next 2-3 weeks and if they are still escalating, he would then check him into the hospital for a 24 hour observation period where they could do an MRI, xrays, speech/swallow assessment and any other in-depth tests appropriate to his symptoms.
We also discussed the possibility that Keith's body is weakening due to SMA and the fact that he's been bed-bound for the last 10 months. The doctor also said that there is a greater chance that Keith will have to remain on the ventilator permanently. As Dr. Gilbey noted, Keith really has no physical reserves so he may have to come to terms with needing that support for the long term. We fully expect Keith to live for a long time to come, however it may be without some of the freedom he is used to.
Despite Keith's health setback, we are still excited about the new year and all its positive potential on every level. As always, we are deeply appreciative of your continued love, support and prayers.
Here's to a happy, healthy and prosperous new year for us all!
Love,
Ruth, Keith & Henry Hopper
We also discussed the possibility that Keith's body is weakening due to SMA and the fact that he's been bed-bound for the last 10 months. The doctor also said that there is a greater chance that Keith will have to remain on the ventilator permanently. As Dr. Gilbey noted, Keith really has no physical reserves so he may have to come to terms with needing that support for the long term. We fully expect Keith to live for a long time to come, however it may be without some of the freedom he is used to.
Despite Keith's health setback, we are still excited about the new year and all its positive potential on every level. As always, we are deeply appreciative of your continued love, support and prayers.
Here's to a happy, healthy and prosperous new year for us all!
Love,
Ruth, Keith & Henry Hopper
Wednesday, September 3, 2008
Time for the Big Guns: Keith's Letter to Oprah
With Oprah's new season starting, I thought we should do our part to kick it off well. So, naturally, we thought she should hear Keith's story. Please feel free to use this letter as a basis and let her know that you think it's a great story too!
My name is Keith Hogan and I am 43 years old. I was born with a genetic disease known as Spinal Muscular Atrophy Type 2. I also have severe scoliosis and respiratory problems. I have lived with these conditions my entire life & I've never been able to walk. Over time, I have lost the ability to use my arms. You can see more about me here: http://www.youtube.com/watch?v=1S9D8y89GM8.
On 2/18/08 I was hospitalized due to pneumonia & chronic respiratory failure. Within a week of being admitted, I had an emergency intubation, received a tracheotomy & was put on a ventilator. I had several episodes that brought me close to death. I was finally released from the hospital to move back home on 5/27/08. I have continued to recuperate but the medical expenses not covered by Medicare & the extended coverage I purchased through Humana are outstripping my financial capacity to pay for the level of care I need. I find myself in a large & growing group of people who have too much money or assets to qualify for the benefits they need, but not enough personal financial resources to pay for the care they need.
At the present time many potentially productive members of society are being warehoused in nursing homes which are funded by Federal dollars, little of which is spent on quality patient care. This can be changed by the Community Choice Act which is based on the concept that the funding follows the patient, thereby empowering the individual.
I have come to understand how absolutely flawed the entire healthcare industry in the United States has become. I believe that ineptitude, greed & systemic corruption brought us to this state. America can & must do better. The unarticulated public policy of impoverishing people with disabilities, who might otherwise be a productive part of society, must be abolished. This is not just a healthcare issue. For people with disabilities, it is a matter of human rights.
++++++++++++++++++++++++++++++++++++++++++++++
My name is Keith Hogan and I am 43 years old. I was born with a genetic disease known as Spinal Muscular Atrophy Type 2. I also have severe scoliosis and respiratory problems. I have lived with these conditions my entire life & I've never been able to walk. Over time, I have lost the ability to use my arms. You can see more about me here: http://www.youtube.com/watch?v=1S9D8y89GM8.
On 2/18/08 I was hospitalized due to pneumonia & chronic respiratory failure. Within a week of being admitted, I had an emergency intubation, received a tracheotomy & was put on a ventilator. I had several episodes that brought me close to death. I was finally released from the hospital to move back home on 5/27/08. I have continued to recuperate but the medical expenses not covered by Medicare & the extended coverage I purchased through Humana are outstripping my financial capacity to pay for the level of care I need. I find myself in a large & growing group of people who have too much money or assets to qualify for the benefits they need, but not enough personal financial resources to pay for the care they need.
At the present time many potentially productive members of society are being warehoused in nursing homes which are funded by Federal dollars, little of which is spent on quality patient care. This can be changed by the Community Choice Act which is based on the concept that the funding follows the patient, thereby empowering the individual.
I have come to understand how absolutely flawed the entire healthcare industry in the United States has become. I believe that ineptitude, greed & systemic corruption brought us to this state. America can & must do better. The unarticulated public policy of impoverishing people with disabilities, who might otherwise be a productive part of society, must be abolished. This is not just a healthcare issue. For people with disabilities, it is a matter of human rights.
Sunday, August 17, 2008
Don't 'dis' my ability!
As a natural innovator, entrepreneur and all-around (r)evolutionary, I am not the first choice to send in to deal with the system. I'm a direct communicator that just wants to get to the point. However, the keepers of the information mete it out in meager portions and it mostly leads to more questions rather than the answers being sought. Keith is much better at this game since he's had a lifetime to hone his skills. However, even he gets exasperated at the lack of solutions available for a problem that has been with our society since time began. That problem? How do we deal with the disabled in our society so that they remain productive citizens?
It has become increasingly clear that our nation's unspoken public policy is to impoverish people with disabilities. And Texas is no different.
In spite of Keith's professional and financial success, as well as the generosity of his friends and family, it is increasingly difficult to make ends meet. But, the truth is that he'll never be poor enough to get help from the state of Texas and, like most true Texans, he doesn't want to live anywhere else. Keith's forbearers moved to Texas before the Alamo fell. They have had a strong hand in shaping his hometown, Victoria, and have contributed to the economy in significant ways.
It is appalling that Texas which, as a state, has benefited greatly from his family's contributions, chooses to devalue Keith's potential by depriving him of the resources necessary to continue as a contributing member of society. And this goes beyond limiting Keith.
As his wife, I am happly committed to doing everything I can to support him in rebuilding his health and get back to participating in a life he wants. What this means is that I'm basically on call 24/7. We have very good Personal Care Attendants who are devoted to Keith. However they are people too and there are times that I have to fill in for them. In addition to managing that schedule, I also need to earn income and, when possible, take care of myself.
By denying financial support to Keith, Texas is also "dissing" my ability to contribute. Like Keith, I am a naturally entrepreneurial and highly productive person. However, the constant strain of managing the home healthcare experience sucks energy at an alarming rate. When I hear the candidates yammer on about the energy crisis I wonder if they are talking about fuel for the car or fuel for the caregivers? I can control how much I drive, however I cannot always control how much I am driven. Right now I'm running on the renewable energy of love, commitment and faith. What I need is money to cover everything else!
It has become increasingly clear that our nation's unspoken public policy is to impoverish people with disabilities. And Texas is no different.
In spite of Keith's professional and financial success, as well as the generosity of his friends and family, it is increasingly difficult to make ends meet. But, the truth is that he'll never be poor enough to get help from the state of Texas and, like most true Texans, he doesn't want to live anywhere else. Keith's forbearers moved to Texas before the Alamo fell. They have had a strong hand in shaping his hometown, Victoria, and have contributed to the economy in significant ways.
It is appalling that Texas which, as a state, has benefited greatly from his family's contributions, chooses to devalue Keith's potential by depriving him of the resources necessary to continue as a contributing member of society. And this goes beyond limiting Keith.
As his wife, I am happly committed to doing everything I can to support him in rebuilding his health and get back to participating in a life he wants. What this means is that I'm basically on call 24/7. We have very good Personal Care Attendants who are devoted to Keith. However they are people too and there are times that I have to fill in for them. In addition to managing that schedule, I also need to earn income and, when possible, take care of myself.
By denying financial support to Keith, Texas is also "dissing" my ability to contribute. Like Keith, I am a naturally entrepreneurial and highly productive person. However, the constant strain of managing the home healthcare experience sucks energy at an alarming rate. When I hear the candidates yammer on about the energy crisis I wonder if they are talking about fuel for the car or fuel for the caregivers? I can control how much I drive, however I cannot always control how much I am driven. Right now I'm running on the renewable energy of love, commitment and faith. What I need is money to cover everything else!
Friday, August 15, 2008
The Story Begins...
My husband, Keith Hogan, is a remarkable man. He is 43 and has Spinal Muscular Atrophy. He's outlived his doctor's predictions by about 30 years at this point. His form of the disease is Spinal Muscular Atrophy Type 2. And, his film tells a lot of the story.
He entered South Austin Hospital with pneumonia on February 18th and, due to his inability to use his hands or legs, there was somebody with him 24/7 to be sure his needs were fully covered. Any night that I didn't stay with him, his mother did. For the most part he received excellent care from caring staff. There were some notable exceptions, but that's to be expected I suppose.
Keith did not return home until May 27th bringing new accessories: a trache, a ventilator and the need for 24/7 personal care attendants. This automatically doubled our PCA expense to almost $9000/month. We attempted to get help from the state of Texas, but don't meet the poverty level necessary for Medicaid and are not wealthy enough to continue paying out of pocket.
This is where the real work became clear and where our story begins.
He entered South Austin Hospital with pneumonia on February 18th and, due to his inability to use his hands or legs, there was somebody with him 24/7 to be sure his needs were fully covered. Any night that I didn't stay with him, his mother did. For the most part he received excellent care from caring staff. There were some notable exceptions, but that's to be expected I suppose.
Keith did not return home until May 27th bringing new accessories: a trache, a ventilator and the need for 24/7 personal care attendants. This automatically doubled our PCA expense to almost $9000/month. We attempted to get help from the state of Texas, but don't meet the poverty level necessary for Medicaid and are not wealthy enough to continue paying out of pocket.
This is where the real work became clear and where our story begins.
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