ALS Diagnosis

Special Needs Trust

This is a difficult post to write. I had been sitting on it for several months, trying to decide best how to convey the emotions I am feeling.

A few weeks ago, I was asked by a stranger if I had been in a car wreck, as I was wearing my neck brace. I replied that I was in a train wreck, and I was distracted by another person before I could finish my thought. He later asked where the train wreck took place, and I apologized for misleading him, and said I should be so lucky.

When I was first diagnosed with ALS last spring, I was overcome with grief, and spent many hours over the next month sobbing and screaming in rage. Eventually, life took over again, and I set all that aside for a while. After all, I still had two young daughters to help raise.

My Family

Most of my initial fears have come to pass. I remember the initial struggles lifting Sabina, just a few short months after her birth, before we even knew that there was anything close to serious going on. By January of last year, I was not even able to pick her up at all. Fortunately, she began crawling soon after, and had figured out how to crawl into my lap when she wanted me to hold her. I am so happy now when she climbs up on my lap to have me read a story to her or to watch a YouTube video.

And Ashlin has been very understanding and helpful through this whole process. As I have been unable to give hugs for several months, she came up with a method where she pulls my arms behind her back. I just about cried the first time that she did that. The last couple of months have been difficult, as I am no longer able to turn the pages of books when I read to her. At first, she went through a period when she didn’t want me to read to her at all. But then she spoke with Gwen about her feelings about it, and now she turns the pages for me.

Sadly, however, I know that the worst is yet to come. I will be visiting with the ALS clinic soon in order to get a power wheelchair. At the same time, we need to expand our bathroom to accommodate it, and put in a ramp in the back. And yet, that transition does not feel particularly big for me. Much more difficult has been the fact that I need artificial ventilation in order to breathe at night already. Or that I am unable to play frisbee anymore.

Aaron Welch with Advomatic recently set up a Special Needs Trust in my name. This unique trust allows us to use funds contributed by outside sources (we are legally not allowed to contribute to it), while protecting my eligibility to receive care-giving assistance through the state. The funds can be used to support my needs beyond what I will eventually receive from Medicare/Medicaid.

Basically, at some point down the road, I will be on disability and eligible for Medicare. The good news is that this happens almost automatically for a patient with ALS, due to some lobbying in the last couple of decades. As my needs increase, however, I will need more care and will need to become eligible for an attendant care program in PA, for which the income and asset allowance is almost nothing.

If and when I choose artificial, invasive ventilation, I will require 24 hour care. At that point, I would also need to be Medicaid eligible. This is where things get extremely challenging financially. For example, with attendant care / Medicaid, not only do I need to be basically destitute, but the state looks back over 5 years, and if they see that I have given any money to anyone in that time frame, they assume that I am trying to scam them, and dock the time, adding several months or more to the time before I would be eligible.

Based solely on the odds, there is a 50% chance that I will die in 1 to 2 years, although it’s a little more complicated than that. There are two predominant flavors of ALS: bulbar onset (the brainstem) and limb onset. Mine is the limb, which makes it only slightly more likely that I may live for another 3 or 4 years instead.

I want to point out that I am doing everything humanly possible to beat those odds. When they talk about the life expectancy of ALS patients, however, they are really talking about the "survivability", which is the point when a patient would require invasive ventilation to survive. Most of the 10% who will go on to live a decade or more have reached this point and are locked-in as well, trapped in their completely paralyzed bodies.

We have done what we can to protect what assets we do have. We have been consulting with an attorney as the information is very complex and we want to protect the future for our children as best as we can. We know that major purchases are down the road, such as medical and communications equipment, home modifications, a wheelchair, and an accessible van, all of which will be in the tens of thousands of dollars. The cost to support a patient with ALS in the later stages can run easily up to $100,000 a year or more. The funds in the Trust can help support me while I am alive. After I die, the funds remaining in the Trust will go to my wife, Gwen, to help raise our children.

For those who wish to contribute, we have set up a bank account for the Trust. We have set up a PayPal account as an option to contribute. For a one time donation, click on the Donate button. To make a recurring monthly donation, you can select the amount you wish and click Subscribe. Alternatively, we can accept checks for the Trust; contact me for more information if interested in sending a check.

One Time Donation

 

Monthly Recurring Donation

I am angry at this stupid disease. I know from my time with Elisabeth Kubler-Ross so many years ago that this is a natural part of the grieving process, and that eventually I will enter the acceptance phase. I even look forward to that.

But my daughters, Ashlin (8 years old) and Sabina (2 years old), will not have the benefit of the acceptance of my death when it happens. I am being robbed of my time with them, of watching them grow up. It is hard enough to know that I will most likely not be around to watch Ashlin graduate. To know that Sabina will most likely not have any more than a fleeting image of her father from early memories makes me cry.

To add insult to the injury, I am quickly losing my ability to participate in their lives, even now, becoming simply a spectator. What I would give to be able to pick up a frisbee and toss it to my daughters.

I want to thank everyone for all your ongoing support and care. This slow-moving train wreck is more than any family should have to endure.

Heaven Can Wait

I had an appointment this morning with my primary care physician. I thought that the appointment was to request a new lab test. Little did I know that the appointment was really so that my doctor, who shall remain nameless, could wax philosophical on me.

For nearly fifteen minutes, I was subjected to a lecture about how I should look forward to heaven. As if that were not enough, he left me with a list of related reading material. And then he went on to tell me about how I should do something meaningful with my life, such as telling my story to the local paper, so that I can raise awareness of the devastating effects of ALS on one’s life.

Stairway To Heaven, by Tizz77

I am not defined by this disease.

I am sorry, but I don’t need to be told how to die or how to live. I feel like I have a good handle on both. And it’s not like I don’t want to hear about others’ perspectives on life and the hereafter, it just seems rude to lay it on someone without being asked first.

I used to live with Elisabeth Kubler-Ross, who wrote “On Death and Dying.” Not that he would know that of course, although he may have if he had shut his yap for more than five seconds.

To add injustice to the whole thing, he didn’t even order the lab tests that I had requested. I had wanted a Hair Element Test, to get a count of mercury in my body. He pooh-poohed that, telling me that because different labs report different numbers, that the test is meaningless. He instead ordered a Heavy Element Blood Test, which I have already had. I thought that I was prepared for a little skepticism, but after his lecture, I walked out of that office in a dazed condition.

Needless to say, I am open to recommendations for a new family doctor.

To the Drupal Commuity

You may know me through my work with the Media suite of modules, and before that for my work with Embedded Media Field and Views Slideshow. You may have read my book, Drupal Multimedia, which I wrote before the birth of my second daughter, or seen me speak at a Drupal Camp or DrupalCon. You might have worked with me at a code sprint. Even if you haven’t met me, you might have seen some of my handiwork through one of the many sites I’ve helped developed over the years with Advomatic. Drupal has been a central part of my life - one of my three loves.

Earlier this year, my family and I were given some devastating news. I was diagnosed with Amyotrophic Lateral Sclerosis (ALS), more commonly known in the US as Lou Gehrig's Disease, which is a motor neuron disease that is slowly killing the motor neurons in my body. This is an incurable, terminal illness: 50% of patients diagnosed are dead within 2-3 years, and a further 20% in five years. Only 10% of patients are still alive after 10 years, and the majority of those are "locked in", like Stephen Hawking, unable to move any part of their body other than their eyes. The senses and cognitive functionality are spared. The disease is a progressively degenerative Motor Neuron Disease (MND), that eventually kills every voluntary muscle in the body, until the diaphragm collapses, which is generally when the patient dies, unless they are given a tracheostomy (and don't succumb to pneumonia).

This rare disease is sporadic, with no known cause. It's considered an "orphan disease", with an incidence rate of about 1 in 100,000. My neurologist is hopeful in my case, as it's limb onset (rather than bulbar, or brain-stem, onset), and I'm on the younger side of the bell-curve. Still, an early prognosis is impossible, as the disease progresses randomly. Right now, he said that based on my EMG, he expects to see clinical signs in my legs by next year, although he can't say if I'll be in a wheelchair by then.

Currently, I am unable to lift more than about 1-2 pounds. It's been hard on my wife, as she's doing everything I'm unable to do (vacuuming, dishes, etc.), on top of raising our children and pursuing her Masters. Our house is the opposite of accessible, with no first floor bathroom and being on a steep hill. Thus, we're in the meantime looking to buy a ranch house that we'll be able to modify.

Although I have some visible atrophy in my shoulders, wrists, and thumbs, I'm feeling on top of the world. I'm trying to front-load my life now, to ensure I'm doing what I'm able to at full capacity while I still can. I'm hopeful; I've been expecting a medical revolution this decade, and if I can hold on with my wits, I might be able to take advantage of that. Even if that doesn’t happen, from reading about and connecting with other PALS (Patients with ALS), I've learned, unsurprisingly, that the longer-lived people are those who manage to maintain a positive attitude in life.

I'm fortunate to be working with Advomatic, both because my job (Drupal!) is something I'm still able (and love) to do, and because I'm surrounded by such a supportive team. I plan to develop for as long as I'm able; I'm looking into voice recognition software for when my hands ultimately go. In a race against time, I'm also 'voice banking', recording my voice so that when I ultimately lose my voice, the computer will sound roughly like me. (Hawking's complaint is that he sounds "like a damn Yankee").

I know that many of you will want to know how to help me and my family. I know from experience that the first response is to want to make food. I appreciate that, as a gift of food directly helps to sustain a person, but we have a large, helpful community through our daughter’s school that is delivering meals once or twice a week. (Although if you’re local to us, we could use some occasional help with the yardwork...)

You can also send donations to the ALS Center at Penn State Milton S. Hershey Medical Center
(see http://pennstatehershey.org/web/neurology/patientcare/specialtyservices/als for more details).

Finally, Advomatic will likely be setting up a fund to help for when I’m unable to work any longer, and to provide a legacy for my family. Please contact Aaron Welch if you are interested in contributing to this.

Thanks,
Aaron Winborn

"It's only when we truly know and understand that we have a limited time on earth - and that we have no way of knowing when our time is up, we will then begin to live each day to the fullest, as if it was the only one we had." - Elisabeth Kübler-Ross

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The Society for Venturism has chosen me as the recipient of its charity for this year, to hopefully offer me cryonic preservation when the time comes. And this month, Longecity, an excellent forum for the discussion of issues related to extending the lifespan of humans, has offered up a matching grant of up to a thousand dollars to help out! So help out! Please.