Help Us Bring J-Bone & Pokey Home

Help Us Bring J-Bone & Pokey Home

Brought to you by The Coalition to Bring J-Bone (Jason Siroff) & Pokey Home

It was four years ago that our friend J-Bone received an initial diagnosis of Chronic Traumatic Encephalopathy (CTE) – a variant of dementia most commonly associated with professional football players, repeated concussions and extensive recurring head trauma. At the time, the neurologist believed it to be such a severe case of CTE, that he informed Bone’s family, that it was his opinion that Bone would be “broke, destitute and homeless within two years”, and that in his estimation, Bone most likely would “not be alive in four years”.

It was this initial diagnosis that led to the Social Security Administration designating J-Bone as being "permanently disabled."

That was four years ago.

It was also just the beginning.

Over the course of the next four years, second opinions were sought from three additional Neurologists. And though the findings of all four Neurologists ultimately concurred on the diagnosis of dementia, it would take those four years before a conclusive determination was made as to which variant he was suffering from.

Today we know that variant to be Frontal Temporal Dementia, more specifically, Behavioral Variant Frontal Temporal Dementia (bvFTD).

As you can probably imagine, the diagnosis has had a profound impact on his life and the lives of those who care about him. We are asking for your support in our fundraising efforts so that we can provide the much-needed care and support our friend deserves, and so desperately needs.

bvFTD is atypical of most other forms of dementia in that it tends to strike at a much earlier age – most often between the ages of 40 and 65. It is a debilitating neurological disorder that primarily affects behavior, personality, and language skills. As this devastating disease progresses, those with bvFTD will experience further behavioral changes, personality alterations, emotional instability, impaired decision-making abilities as well as a decline in socially appropriate behavior, judgment, self-control, and empathy. Furthermore, due to progressive cell loss in their frontal lobes, bvFTD patients will exhibit continuing, and declining deficits in complex thinking or “executive functions” such as planning, organizing, mental flexibility, and generation of ideas. It is not hyperbole to say that it robs individuals of their essence, their humanity, their dignity and their ability to navigate life's simplest tasks.

bvFTD is a cruel, relentless and devastating disease.

But we’re not going to let it take our friend away from us just yet. As almost anyone who knows him can attest (the 'decline in socially appropriate behavior' notwithstanding), there were certain truisms that came along with knowing Jason and being counted as one of his friends.

In no particular order…

• That no matter the circumstances, J-Bone had the remarkable, some might say awe-inspiring, and truly wondrous ability to make you laugh. And I mean really, really laugh. And sure, it’s true that his brand of humor was most oftentimes obscene and profane, and certainly no one would argue that it wasn’t almost always indecent and salacious; but it was never mean-spirited or cruel. He wasn’t one to make jokes at the expense of others. Quite the opposite, really; Bone was a master in the art of self-deprecating humor.

And he did it just by being J-Bone.

• That he had a phenomenal, gravity-defying pompadour – and that he wore it with pride.

Because that was just J-Bone.

• That he was steadfast in his commitment to doing his part in helping to protect those who were unable to protect themselves; particularly the most vulnerable of us all – that seemingly never-ending roster of abused and neglected children. And Bone wasn't one to just talk it. For more than two decades he volunteered the vast majority of his free time, lending his investigative talents to Justice For Children, The National Association to Protect Children (PROTECT) and other organizations working to save children from abusive environments. And all of it, every hour, he provided pro bono. He never took a dime.

That’s who J-Bone is.

• And it didn’t take anyone long to become acutely aware of his colossal, sincere and impassioned love for reggae music. For close to three decades, at countless venues throughout the District, J-Bone would have the denizens of D.C. dancing into the wee hours of the early morning. And when he wasn’t in a booth at a nightclub, you could hear him spreading that same love over the airwaves from the control booth at WPFW. One of the things he once (or probably more than once) told me he liked the best about being on the radio was that it allowed him to bring so many of the local artists onto the air. He wanted the listeners to be able to hear directly from the artists, to be able to get to know them as intimately as one could via such a medium, and to learn firsthand what their music stood for – the lyrics of which Bone often referred to as ‘message music’. To this day, and I’ve been in D.C. since Booth shot Lincoln, I’ve never once heard that Bone ever declined an artist’s request to come on the show. Rather, he would go and seek them out and encourage them to come on. He was happy that he was in a position to help get the word out. To help promote both the established veterans, and the new crop of up-and-coming local artists.

Because that was J-Bone.

• And depending on when you first met him, you might just have been lucky enough to have met Pokey, as well (think Petey from The Little Rascals). As it was the rare occasion that you would see J-Bone out without Pokey at his side (or he at hers, as he sometimes liked to say). In true J-Bone fashion, Pokey was, of course, a rescue. There’s a cute story about him and Rachel going to the pound that first time to meet her, but you’ll have to either ask him to tell it to you, or perhaps we’ll get the chance to share it in another update. People would ask him all the time why he named her Pokey, and he would say because he, “broke her out of dog jail” (i.e. the pound), and he thought that if he named her “Convict” it would only serve to further people’s misconceptions regarding dogs of her breed. And so Pokey it was. And for the last four years, it has been Pokey who has given Bone that reason to rise each morning. Given him a purpose in ensuring her care. But most importantly, for the last four years it has been Pokey, and Pokey alone, who has been by his side each evening providing him with the sense of safety and security he so often requires these days, simply to make it until the next sunrise. Everyone that knows Bone knows that he would go to hell and back for Pokey. And God help anyone that ever tried to harm her.

That’s J-Bone.

• And if the time ever came where you found yourself in dire financial straits – think, being evicted from your home, or having your utilities cut off, or perhaps you missed a car payment (or two) and now your car was sitting on the brink of repossession, or maybe it was just that you couldn’t pay your bar tab that night, or possibly your bail the next – if you were his friend, and if he had it to give, I’ve never heard a story of J-Bone ever telling anybody, “no”. But it was more than that. Because there is not a single member of his large and diverse circle of friends (and I’m certain that there are far more outside of it), that can remember a time (or heard a story about) J-Bone ever asking for the money back. For Bone, if he had the money to give (and let’s be clear, he didn’t always have it), he gave it. It was never a loan, it was always a gift.

Because that’s also who J-Bone was.

And now it’s our turn to help him.

Because whether it stemmed from just plain stubbornness on his part, some weird form of misguided obstinacy or his (oftentimes) exasperating sense of pride, J-Bone would never ask for a penny from anyone, so we’re here doing the asking for him.

Because, right now, there is no cure for FTD.

Nor is there currently any way to slow its cruel and devastating progression.

There are, however, medications that can be utilized to treat some of the symptoms of the disease; possibly even improve cognitive functioning. Moreover, non-pharmacological interventions exist such as cognitive stimulation therapy, occupational therapy, and speech therapy that may all be used in combination to help improve J-Bone's cognitive functioning and overall quality of life. Both of which, in turn, could help in managing some of the behavioral symptoms, and help improve his declining communication and language skills.

And if you've made it this far, and now find that you would like to aid us in our goal to bring J-Bone & Pokey back home, know that your donation will go towards the following urgent, and desperately needed resources:

• Relocation: J-Bone & Pokey are currently in another state, without a means of support, financial or otherwise, and as such are unable to travel back home on their own to Washington, DC. The funds raised through this campaign will be used initially, and immediately, to cover the costs of temporary housing and transportation for Bone, Pokey, and all their belongings.

• Private Housing: The primary goal of this campaign is to secure safe and suitable housing for both J-Bone & Pokey. This will not only help to ensure their physical safety, but will also provide an environment that supports J-Bone's specific needs as his condition continues to evolve. Private housing will allow him the ability to maintain his independence and to live in a familiar environment. Moreover, and just as important, it will ensure that Bone and Pokey are not separated from one another.

• Medical Expenses: BvFTD requires ongoing medical care, including regular check-ups, medications, treatments and specialized nutrition that will all play an increasingly crucial role in enhancing Bone's quality of life. The funds raised will help cover these expenses and ensure that J-Bone receives the necessary medical attention required.

• Support Services: Because the disease is progressive, J-Bone will greatly benefit from constant and continued support from various services tailored to his needs. These will include therapy sessions, cognitive stimulation programs and assistance with daily activities. These services will help him maintain a higher quality of life and hopefully help to slow his retreat into further isolation.

• Service Dog Care: Pokey, J-Bone's loyal service dog, plays a crucial role in providing emotional support and companionship. Further, as Bone's disease has progressed, and he has become more and more isolated, it is Pokey who has remained his constant companion. His only consistent source of comfort, love, and stability. She gives him a reason to get up each day, and she provides him with the security he needs each night. And being as they are only very rarely out of each other's company, Pokey has become acutely attuned to the changes in Bone's personality. To the extent that she is now able to intuit the times when his disease is becoming too much for him. She can sense when his levels of anxiety and confusion are rising, giving way to greater frustration and aggravation, and knows to go to him and calm him before they become overwhelming. For the last four years, Pokey has been the only thing Bone has had to cling to, and thus the funds raised will also contribute to Pokey's well-being, including veterinary care, food, and other necessary supplies. For it is Pokey's unwavering presence that offers solace and emotional support, providing J-Bone with a connection to stability and love that truly transcends words. Their bond serves as a poignant reminder of the power of companionship, and the profound impact that animals can have on our lives. Separating the two of them has never been an option.

We understand that times are challenging for everyone, but any contribution, no matter the size, will make a significant difference in J-Bone's life. Your generosity will not only provide the practical support he requires, but just as importantly, you will be sending him an incredibly powerful message of strength, compassion and solidarity. Emotions that have been woefully absent from his life during his continuing struggle with this devastating disease.

And if you find that you would like to help us in our efforts to bring J-Bone & Pokey home, but are unable to do so at this time, please know that by simply sharing the link below with friends and family, or by including the hashtag #BRINGJBONEHOME within your social media posts, could both prove just as beneficial in helping us to attain our goal.

As a former care partner, I know firsthand the challenges that come with supporting someone with dementia. It can be an incredibly difficult and emotional journey, but with your support, all of us, together, I know that we can make a difference.

Dementia is a journey that no one should have to face alone. By donating to our cause, you will be making a direct and meaningful impact on our friend J-Bone's quality of life. Your contribution will help ensure that he receives the necessary care and support to maintain his independence and live his life with dignity.

Let us unite behind J-Bone & Pokey, showcasing the incredible potential of human compassion.

I thank you for taking the time to read this letter and for your consideration. If you have any questions or would like more information about our fundraising efforts, please do not hesitate to reach out to me.

With heartfelt appreciation,

The Coalition to Bring J-Bone & Pokey Home

You may also view or purchase some of his remarkable artwork at: heavyweightart.com