Working that Oil

Walking the Rails

Dr. Moser had published an article[1] that suggested that if pre-symptomatic boys received Lorenzo’s Oil, they had a reduced chance of developing the bad stuff associated with adrenoleukodystrophy. Problem: this stuff was hard to come by, in the U.S., anyway. I wondered, could this deficiency actually be a novel angle?

Expectant and new parents, with good reason, may well be the most anxious lot ever. I recognized that the pleas of a few men struggling with AMN, were drowned out by the urgent screams of hundreds of nervous moms and dads who just learned that their child had a deadly disease with no cure. Maybe this reality might benefit everyone? Sort of a rising tide lifting all ships sort of thing?

Well, it was fine in theory, but I knew that without a proper sponsor to push for the registration of the Oil as an approved drug, it was…

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6 Lesions is not proof, but…..

Walking the Rails

When I was diagnosed with AMN some years ago, I remember telling myself: I am ok with a wheelchair, but please, please leave my brain alone. So, as I was advised, I got the annual MRI. Nerve-wracking for the first several times, but became routine. Back in those days, the company line was if you don’t get it by 40, you won’t. Well, 40 came and went, and then they stopped saying that. So, I continued with the MRI thing.

At some point, I starting asking questions: so, if I am not a candidate for a bone marrow transplant, and there are no therapies, what is the point? So I stopped the scans.

Earlier this year, I was chatting with someone at Kennedy-Krieger who wanted to know when I last had an MRI. I was not sure, and explained my thinkings on the topic. She mentioned that it seemed as…

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Apathy Surrenders to Progress!

Been gone a while, thinking and working. I hope that you all are well. Here is a continuation of the story that I began to share with you months ago.

Walking the Rails

Status quo continued. Life seemed to be back on course with the wins sometimes more common than the defeats. Something remained, though, and I had no idea what it was.

What was it that I required? Who could know, but it seemed that I had both short- and long-term ideas. I needed to stay healthy, active and independent. Beyond that was a wild card. I had spent nearly 15 years figuring out who I was, all the while insulating myself from the community of people stricken by X-ALD. Was that denial? I do not expect it was. Truth be told, most of the people that I met did little for me. Hearing the same stories about how bad it will get, or learning just how useless a crippled carpenter feels did not sit well with me. So, I continued my battle alone. It was a one-man battle.

And I have…

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Wheelchair Maintenance

Walking the Rails

Hello folks. A question for you all. Maybe I am just extra hard on my chair. Anyway, it seems that I am constantly fixing one thing or another. I have parted out 2 older TiLites, almost to the frames.

It got me to thinking, do other people have this problem? If so, how do you deal with it? Is there such a thing as a wheelchair mechanic? And the parts, holy cow, TiLite is exorbitantly expensive.

Makes me wonder how folks do it.

Anyone willing to answer? Please do.

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Getting to Know Mr. Augusto

I am trying to come back into the fold after a 3 month sabbatical of sorts. Not to say that I will, but I’d like to. Melinda, many thanks for the gentle nudge!

Walking the Rails

I guess I never knew quite what it cost. There were a few extras: wire fees, shipping charges, U.S. import duties and the like. Besides, I bought the stuff in Euros, and I always get confused by exchange rates. It seems that in December, 2009, it came to around $175 a bottle, which was enough for maybe 10 days, depending on how careful I was when I poured it. Whatever it was, it was pricey, it could be dangerous if not used properly and the diet was no fun.

My strategy was to keep taking it for as long as my body could stand it, hoping it stabilized the disease while I waited for the development of a better, curative therapy.

It had taken a bit of persistence and plenty of luck. But here I was. This was my experiment, and I felt fortunate to be in on it. No…

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Fire in the hole!

The Clinical Trial of one begins!

Walking the Rails

Untangling the shipping mess was going to wait. I had 17 bottles, and was on the program. I figured that my dose ought to be 50 mL per day. I vividly remember that first day. The whole family gathered around the kitchen table, almost like a ceremony. They watched as I carefully measured out the dose, then quickly threw it back to a grand applause. I am not thinking that the kids understood how important the moment was to me, but they played along, and their enthusiasm added to my excitement.

My new daily ritual was in place. I had read that some folks split the dose up throughout the day, or tried to disguise it in their food. Myself, I saw no way to enhance the palatability of this stuff: like my whiskey, I did it straight up. Certainly not tasty. Not too bad, though, and from where I…

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I am told that getting weed is pretty straight forward. Lorenzo’s Oil was a bit trickier.

Here is the story about when I tried my hand at drug trafficking. Please, have a look.

Walking the Rails

I sent out bunches of e-mails to suppliers. Mostly, I never heard back, and when I did, there was always one roadblock or the other: the Oil was available only by prescription, while sometimes, it could be purchased over the counter. Then it got complicated. The darn thing was, even if the Oil could be had, I was stymied by other stuff. A lot of times, distributors covered a region with exclusive distribution guidelines- shipping it out of the country was a no go. And if you could, there were those pesky exportation rules. Many permutations of obstacles, nothing was working.

After what seemed like hundreds of dead ends, the planets aligned in Hong Kong. The mystery man behind the email assured me that there would be no issues buying or shipping it. All he needed was for me was to wire a few thousand Euros and the Oil was…

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“So, there you have it, drink Lorenzo’s Oil and grow myelin!”

Here is a brief story about how I picked up some false hope and went with it.

Walking the Rails

Although the study was halted, I still needed to come in for my final study appointment. Compared to my previous visits, my mood was not great. Still, I tried to be optimistic. I arrived armed with questions: “why was the study stopped early”, and with a bit of desperation, “were they able to salvage any useful data?” I met with Dr. Gerald Raymond. First, he confessed that at the onset of the study he was less optimistic than Dr. Moser. I found that to be a strange introduction, it got my attention.

Then, he warned me that there was no way that he could tell me that Lorenzo’s Oil is an effective treatment. Even more weirdness, why would he give that sort of qualifying statement?

Dr Raymond carefully stated that “an initial look at the imaging data looked promising.” By now, I was super intrigued. He sketched out a figure…

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The Trial Begins!

Great Work Continues at SwanBio!

This is fabulous news for us AMN patients. Just a mouse, but you must start somewhere.

Walking the Rails

I was thrilled to read today about the mouse data that they announced today: human ABCD1 shows dose-responsive expression and activity

To my untrained eye, this is fabulous news, and so much better than the plethora of ways that we have seen to lower VLCFA. To actually move on our mutated gene sure looks great to me!

Keep at it SwanBio!

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Lorenzo’s Oil

While many of you (well, maybe some of the older folks) have heard about Lorenzo’s Oil, in this post, I describe the beginnings of the large placebo-controlled Lorenzo’s Oil study that I participated in at the Kennedy-Krieger Institute. Please, have a look!

Walking the Rails

Lorenzo’s Oil, a 4:1 mix of oleic erucic acid is extracted from rapeseed and olive oil. This stuff normalized the accumulation of VLCFA in the brain. It seemed like a straight forward enough solution; it should counter the disease and slow its progression.

The Oil had been studied for decades. In the beginning, they gave it to everyone, kids and adults, alike. Dr. Moser published data suggesting that if you gave it to boys before they became symptomatic, they had a better chance of remaining symptom free[1]. This, paper drew howls of criticism: he gave it to most anyone and there was no placebo-control. The analysis was based on a comparison to historic controls.

He had a problem. While some kids would grow up like me, relatively unscathed, others would take Zach’s path and not do so well. There was no way to know. This was the issue…

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Curing AMN: A Tall Order

Back in the old days, I was pretty sure that a cure for AMN was just around the corner.

Walking the Rails

I learned that there had been a transgenic X-ALD mouse model for many years, and I kept hearing about the grand gene therapy trials that were right around the corner. Still, things were not happening as I would have liked. At the time (mid-to-late 90s), efforts were limited to re-purposing old medications; not exciting. Still, I readily volunteered for the few trials that I could find. The ones that I remember tried lovastatin and a couple different ways to use 4-Phenylbutyrate.

I went into these studies with great optimism, and I guess, naïveté. I was certain that these tiny experiments of 12 people would work and turn my disease on its head. None of them did.

By this time, I had been in the pharmaceutical industry over 5 years, and thought that I knew pretty much everything. I guess the problem was, in my roles, I had it easy, the…

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Brad Gillespie: AMN Peer Mentor

Walking the Rails

I am pleased to be selected by ALDConnect as a Peer Mentor. It is my hope that I am able to help AMN-afflicted men better understand their disease and the scary thoughts that many of us feel as we come to terms with our diagnosis.

Many thanks to the folks at ALDConnect for the opportunity to get more involved in the community.

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Back to Business: What to do with a Recent AMN Diagnosis?

Here is the next bit of my AMN story- I appreciate you taking the time to hear me drone on- it is important to me, and I appreciate you reading. Very therapeutic stuff for me!

Walking the Rails

Please rewind to 1996, the early, foggy days.

So that was what cerebral involvement was all about. There was no way that I could have imagined how horrible it could be. Nonetheless, at least for the time being, my MRI looked good: I did not have to worry about this business, and that was a fine development. Nevertheless, I was left facing an ocean of emptiness. Although perhaps I was able to believe that I might survive the balance of 1996, there was just too much unknown. I had never really thought of myself as being overly curious, and I guess I was not. No, it was something beyond simple wanting to know. No, what I was then dealing with was bordering on obsession.

I had a reasonable understanding of pathophysiology. This would need to be my foundation. Now a patient, I set out to learn as much as possible…

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Coming to Know Todd

I decided to write a bit about some unexpected positive energy that I experienced while bearing witness to my brother’s death. Ten years later, still not sure I understand what I know….

Walking the Rails

While dying is what we are trained to fear, it turned out that bearing witness to the passage from living to dead was not as difficult for me as I had expected. Somewhere in the process, I became detached from the anticipated dread, and engaged in a pleasantly unexpected subject.

To understand this development requires a background understanding. It had always been complicated and difficult between us. From my perspective: one of us was oil, one was water. It was that clear. Todd and I had nothing in common, nor any need to be more than vaguely civil with each other. This was our relationship, with a shared set of parents, really our only connection.

It was bigger than just our discord. I do not think that Todd ever developed the skills needed to facilitate healthy interactions with anyone. Nearly every person coming up in conversation was described in a…

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Todd was the third to go

Here is the next bit. Please have a look.

Walking the Rails

After a few trips to the hospital, mom got Todd enrolled in a hospice care program. So, the next time he got sick, he would skip the hospitalization and the stuff that goes with it. Instead he would receive extra grooming, time with a chaplain, additional nursing care, morphine and oxygen. His time in hospice was brief- the next go around came in less than a week.

I got a call from Matt: “Todd is not well; doubt he makes it through the night.” No idea why, but I really had to be there. I got it together and arrived at Matt’s that same night. I did not sleep well. The next day, we got over to the nursing home: he looked pretty rough. He wore a full-face oxygen mask and his breathing was shallow, rapid and coarse: every breath was a struggle. I had never seen anyone die, but…

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Cerebral Adrenomyeloneuropathy

Walking the Rails

This one is not such a cheerful installment. I am aware that I promised that the content of this website would be optimistic and upbeat. Nonetheless, as we all know, the potential for cerebral involvement is part of the bargain. I do not plan to dwell on it, but it is a big deal for those afflicted. It would be irresponsible to pretend it did not exist. I am not at all an authority figure on this topic, I can only share the interactions with my brother and cousin. I am guessing that everyone’s story could be far different.

My brother Todd and cousin Chris both appeared to have the nasty variant- AMN with cerebral involvement. Seemingly normal during childhood, these guys developed novel behavior patters as they grew older. I spent more time with Todd, so I can use his demise as an example. At first, he just seemed…

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His Name is Ken D: He has AMN

Real nice video from Ken D. May it provide some optimism to those of us with chronic disease.

Walking the Rails

This one was a bit tricky for me to write. If it hits anyone the wrong way, please know that it was not intentional.

I have known Ken for the past several months through ALD connect. Please watch his story.

Suffice it to say, if you are afflicted with AMN and do not know him, well, you should.

What I love about Ken is his constant upbeat personality. Anyone who has googled adrenomyeloneuropathy can attest to how easy it is to find all of the horrible aspects of this malady. It was this phenomenon that helped me to set my life expectancy for 6 months back in 1996. While, sadly, all of this horrible stuff does happen to some people, it did not come my way, and you, too, may be spared. If I had somehow met Ken way back then, maybe I could have avoided wasting all…

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First Impulsivity after an Adrenomyeloneuropathy Diagnosis

Here is the next installment of my road to disability. Twenty-five years on, it does not seem completely logical to me.

Walking the Rails

It was the Friday before Mothers’ Day when Dr. Moser dropped the bomb. My body proved resilient, remaining virtually the same as it was the day before, the month before, really even 5 years before. Everything else, though, at least everything that I could see, was flipped on its head. This decapitation of my physical reality from everything else was a wholly emotion-based construct. Easy enough to identify it as such, years on, but impossible to know in that time and place. As a result of this clear difference of opinion, I am confident that it would be difficult for a purely logic-based outsider looking in to understand. On the other side, I expect that to anyone with even a bit of a soul, it might make some sense. I was not worrying so much about these critics. I was focused on only myself, and a tiny bit on those…

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Disabled Adventures!

I think that we can all do a bit more than we think. I say press it a bit!

Walking the Rails

I like to think that I stretch the boundaries of what can be done in a wheel chair, well at least I used to until I ran across this young man in Maine!

This is incredible stuff. I guess we all face at least some self imposed limits. Go Enock G!

Makes me think that I need to work a bit harder.

Keep it straight. Brad

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Part 5: Diagnosis: Adrenomyeloneuropathy

Here is Part 5 of the tale that I have been telling. Many thanks for reading. Brad

Walking the Rails

Betty was a good sport, and a hard worker. Since I have never been able to consider complex answers to such simple questions, I was confident that she would come back with a straight forward plan of attack. Certainly, an explanation for what had been causing these annoying balance problems. More importantly, I expected an easy solution to remedy them.

True to form, within a couple of days or so, Betty reported back for the morning coffee break and a debriefing of her research efforts. My confidence in Betty remained high, as I anticipated the instant gratification that would surely come along with her findings. I poured us both a cup, sat back, relaxed in my chair as I prepared for the expected simple answers- Betty would have it all.

But as I would learn going forward, none of this could come so easily. Her main resource at NIH, her…

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Words from Jeff Harmon, an AMN brother

Great insights from Jeff Harmon, another dude with AMN.

Walking the Rails

Jeff sent me this video about his journey. Please have a look.

I think what is so great about Jeff’s talk is his openness to discuss his challenges, issues that many of us have. While I am now older and maybe a bit wiser, I realize that most of the stuff comes with the territory. Unfortunately, this realization took me many years, alone, struggling with these battles.

It does not have to be that way. You are not alone. Let’s talk.

Thank you, Jeff. Brad

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Trail’s End/Journey’s Beginning?

Part 4, things start getting strange.

Walking the Rails

So, we came back the next year, but it did not go well. I did not make it far this time, and never completed the AT. Still really important because it was a pivotal point in figuring out what would be my life. When you are on the trail, you spend a lot of time enjoying the sound of the wilderness, but you also talk a lot. A major topic was a scary development going on in my family. I had heard that my cousin Vicki’s kid Zach was sick, real sick in fact. I don’t remember having a lot of details, but the parts that I had heard were that somehow, a perfectly normal first grader, or thereabouts, was losing it. He could not draw like he used to, he was having vision trouble, I think, and was having a general loss of coordination. I was pretty sure that…

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Strength? Or Weakness?

Walking the Rails

I have been described as mainly stubborn. I seem to have trouble giving up. Even when impractical. If I can get it done, I do. If I think I can, I try. And I think that is a strength, a good thing.

According to dear olde dad, it has always been that way.

AMN has not expanded my repertoire, at least not on the physical side of things. I am not the man I was at 21. Or, 41 for that matter.

I was chatting with Geoffrey on the telephone last night. For whatever reason, I mentioned that I had a few weeds to pull. This seemed ridiculous to him. “You hire someone to do that sort of stuff.” As it often is during a pandemic, all of the interactions between Geoff and I have been virtual. He does not know of my disability.

While Francisco’s boys would be happy…

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A Mother’s Grief

Walking the Rails

Too often, I am afraid, we spend much of our time focusing on those afflicted with disease, without worrying so much about the impact on those around them.

My mom, a lovely lady in so many ways, was stoic. She was a hard worker, who invested little in outward emotion. She was focused on objectives- whatever it took to get things done.

I knew that she was having a rough time when my older brother, Todd, was acquiescing to cerebral AMN, though she did not much show it. After she passed, I came upon this letter that she wrote to Todd a few days after he succumbed.

Got to tell you, like mom, I do not show much emotion. This one made me cry.

It is my hope that reading this may help folks to better understand the extent of pain experienced by the loved ones of those with AMN…

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Something to Consider

Walking the Rails

I love to enter road races in my wheelchair. It is part of what I do, to feel normal. I guess I have a bit of work ahead of me before I need to deal with the problems described in this article- I am consistently slow.

I have a racing chair that some dude gave me years ago. Maybe I should dust it off and see if these guys are right. It’d be good to win some more.

Keep it straight. Brad

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Wanted: Conquest

Here is Part 3. Thank you for reading. Brad

Walking the Rails

Maybe it was because I was no good at regular stuff, but I always have had this real need to conquer something, anything big would do. Most likely something long, canoeing the length of the Mississippi? I became obsessed by the Appalachian Trail (AT): a single track, skipping along the mountaintops from Georgia to Maine, 2,170 miles of straight up paradise. And it came within miles of where I lived! Had to do be done. I had played around with part of it, a couple hours here and there, a few miles, maybe. I knew that it had to get bigger.

Though I am practical: I would not go crazy and do the whole whack at once (although if I had any idea of what was coming, I surely should have), rather I’d break it down into easy to chew chunks of 3-7 days, each. The first year, olde Wayne…

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Image of the full moon one August

Bill Pearse

There is no time like never. In fact, never is the absence of time, its imagined opposite. And so right now, this is a time that would never happen: I’m on the beach in the middle of the night in my underwear leaned against a log waiting for the moon to break through the clouds. It’s been taking forever, another form of time defined by its absence, by being on the brink of happening but taking too long.

When it does come out it’s the reflection of the moon on the ocean that’s more dazzling than the moon itself. It breaks upon the surface of the water like glittering jewels. And hangs in the air suspended like a ghost. And everything is covered in its silvery glow.

It could be like a print negative, that’s what never is like: the image of what you were doing in reverse. I’m never…

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Partnering to fight AMN together

Please have a look at this post- potentially great news for the AMN community.

Walking the Rails

First let me say, on behalf of everyone at SwanBio Therapeutics, how much we admire and respect the platform Brad has created here with his blog. The voices of people dealing with AMN are the ones that rise to the top when we make decisions. For readers who don’t know us, SwanBio is targeting diseases of the nervous system with AAV gene therapy. Together, with the community, we hope to be powering a movement for people living with neurological disorders. How? By gaining a better understanding of disease burden and progression and incorporating that early in our development programs. We know the burden of disease for neurological disorders affects more than the person diagnosed. It affects everyone in their lives. That is why we are focused on moving to solutions quickly – solutions that prevent the progression of disease and enable the progression of the person. Why AMN? Why us?…

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Mi Historia con la AMN

In English, well sort of. I tried

Walking the Rails

Please excuse my translation. Giancarlo wanted it posted in English, also. I have tried– Brad

It all started 5 years ago. I was 26 years old, I worked for a clinic and played sports, especially swimming. I lived a normal life like any child and young person. I was very outgoing and had many dreams to fulfill. I then began to have symptoms in my legs. They got fatigued when I walked a lot. I began to walk badly and sometimes I would fall. That frustrated me a little bit. Next, I began to feel urinary urgency and constipation- things that had never happened to me before. These things alerted me. I have a first cousin with stable cerebral ALD. Soon, I began to relate what was happening to me with ALD-X.

My mother was positive for ALD-X and I since I was the only male child, the probability…

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Mi Historia con la AMN

Here is a very important guest post from a Colombian AMN brother, Giancarlo

Walking the Rails

Todo empezó hace 5 años tenia 26 años, trabajaba para una clínica y practicaba deporte Natación especialmente, viví una vida normal como cualquier niño y joven muy extrovertido y con muchos sueños por realizar empece a presentar síntomas en mis piernas a fatigarme cuando caminaba mucho empezaba a caminar mal y aveces me caía, eso me frustraba un poco, luego me empezo a dar urgencia urinaria y estreñimiento algo que nunca me había a pasado eso me alertó , yo tengo un primo hermano con ALD cerebral estable y empecé a relacionar lo que me sucedía con ALD- X. mi mamá resultó positiva de AlD- X y yo como único hijo varón la probabilidad que yo tuviera AMN era muy alta efectivamente la prueba genética mía resultó positiva y mis primeros fueron muy difíciles pensaba que mi vida había terminado , mis sueños se habían ido a la basura y…

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Very Happy to see New Views

Many Thanks for your support, Survivorsbloghere!

Walking the Rails

Starting this enterprise does not come easy for me. I have carefully avoided the whole social media thing, and while I have occasionally thought about blogging, I had no idea how to go about that. I am not well equipped.

It is slow going, but I am seeing progress as I pick up a bit of traction. I never guess it will get too crazy, but the more folks that we accumulate with a stake in the AMN community, the better the chances that we can build something of some use.

If I may ask, please consider leaving comments- as I said, I have no idea what I am doing. How is this looking for you? What would you suggest to make it better?

Better yet, consider making a guest blog contribution. What are you able to share about your AMN journey? Or for that matter, what can you say…

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If Opportunities Should Knock

You need to play to win, folks.

Walking the Rails

Many years ago, I read a wonderful book, Roughing It, By Mark Twain. I am hazy on the details, but the gist was that this was a manifest destiny thing. If memory serves, the narrator’s brother scored a once in a lifetime opportunity to be the Governor of the Nevada Territory, or something along those lines. Envious of the obvious adventure at hand, it seems that he talked him into taking him along on the trip out West.

At some point, he recalled an anecdote. It went something like this:

After a weary day of travel, we stopped along the trail at an Inn for supper. Hungry as we were, this seemed like a good idea. By and by, the innkeeper brought out a platter with an enormous roasted mackerel and a largish pot of brown mustard.

Underwhelmed, our protagonist asked, “is this all?” To which the innkeeper answered “I…

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Adaptation #3: (Almost) Everyone Needs a 1/4 Ton Hoist

Walking the Rails

Disclaimer: I fully recognize the ridiculousness of this Rube Goldberg contraption.

I also recognize that this is likely not practical for anyone enjoying this fine video of me extricating myself from a tricky situation. I share this as an illustration of the lengths that you may need to go in the normalization of your life.

And this concept does not apply just to the disabled. In my book, if there is no obvious solution, consider improvisation.

While I have been known to weld up assorted spare parts to build my way out of a bind, I also found Harbor Freight to be a great source of gear.

Anything that works is good. While you are likely not the only guy with this problem, it does not mean that there is an off the shelf remedy.

Even though some of my ideas are not well thought through, and others a bit…

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Is Bigger Better?

Walking the Rails

My dearest friend since second grade, Golf and I had discussed canoeing the Mississippi practically forever. How we came to this was a bit of a tale in its own right. Coming up, we had a couple of creeks. No matter which you picked; Flint Creek, or Spring Creek, after navigating through golf course, forests and backyards, you would eventually emerge, to the deep channels of the mighty Fox River.

The end of every journey was Johnson’s Dead End, a tavern situated on the edge of the river with many amenities. It was more than just a handy spot for disembarking. Most every stopover included an Old Style Lager and on a good day, a couple of pickled eggs from the big jar behind the bar. While a pinball game or 3 were sometimes in the cards, it was the conversation that followed these passages that was universal.

While we…

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Nerves Guest Blogger

I once served on a board in Thousand Oaks California with the remit of reviewing all projects in the city to ensure that the needs of the disabled were properly considered. At the time, I was pleased that I could be a part of every major project. Now, I am more impressed that the city cared enough to empower such a board. I long for the day that every municipality has such foresight.

The 5th Sparrow

I am struggling with nerves a lot today. I had my monthly meeting for the committee I am on for bike riders and pedestrians (I am there as an advocate for the disabled) and we were all informed of a major project that had been worked on for a while now and already funded and ready to go yet it got scrapped. Why? Our city council voted it down. Now we are facing another possible scrapping of an important project, this one a little closer to home for me. The changes we are wanting to make would significantly improve safety and remove barriers for a lot of people, the disabled included, on a street that connects with what has been a very dangerous intersection. The same intersection I was blessed to get to be a part of a safety audit for and will be representing at an upcoming workshop later…

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I Posted a Silly Video Demo Of my Accessible Van Some Weeks Ago: This Piece is Much Better

Walking the Rails

Flipping through my Google alerts, I came upon this piece by Max Gravenstein: How to find a used wheelchair van.

Hats off to you, Max, this piece puts my effort to shame.

He has taken an analytical approach to getting the right deal on the car, far more in depth than anything I ever managed.

It goes way beyond there, though. He lays it out in a way that makes it easy to cut through the confusing double talk that comes along with the accessible van market.

Lastly, he acknowledges the obstacles faced by many: extreme cost, and offers ideas on how to get help in achieving what should be a universal right for the disabled.

Well done, Max.

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Pink suns Guest Post

Bill Pearse

The August meteors were back, and with it memories of being in the Austrian alps by the farmhouse where we stayed, on my back on some dirt road watching for streaks of light across the night sky, making wishes.

Bit by bit we wound the summer down. The last bag of charcoal, the daisies cut and composted, the garden stakes in the corner ready to be stowed. I bought a generator and called in an exterminator to manage the ant infestation. I learned you need to bait the foragers so they take the poison back to the colony. The fact they live in walls and you need to take out the queens.

And so life plodded on like that. In the neighborhood men replaced rooftops, joggers passed by, young parents with their kids. And we all returned from the delta to the alpha in how to deal with the virus…

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Burnt Rose

So important to avoid acquiescence, no matter how steep the hill appears, it is likely not so bad.

Walking the Rails

A couple of years ago, one of my neighbors had a nasty fire. Every time I would drive by, I saw the devastation and wondered how it might feel to lose everything?

One pleasant summer day, I was out for a roll in my wheelchair. As I went by, more slowly this time than usual, I saw a radiant red contrasted against the charred skeleton of the house.

Upon closer inspection, I saw this beautiful rose, reaching for the sky amidst the rubble.

Although I had driven by hundreds of times, never once had I noticed this brave flower.

Perhaps I think too much, but this suggest a few things to me:

  1. We all have more to do than we think we can manage. Nonetheless, it is most important to slow down and take in everything around us- you never know what you may find.
  2. No matter the impossibility of…

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Wheelchair Powerassist?

Walking the Rails

Me, I take pride in my use of a manual chair. As such, I plan to put off graduation to a powered vehicle as long as possible.

This alternative, offered by Permobil, may offer an intermediate solution.

The best that I can tell TiLite, the makers of three of my ultralight chairs, is a subsidiary of Permobil. While I will never offer up product endorsements, I will tell you that from my angle, TiLite has the best stuff out there. I expect that these boys are for real.

Curious? Give it look.

Keep it straight. Brad

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Am I done? Am I Resting? Something Else?

Perhaps this signals that I have finally learned to cherish what I have?

Walking the Rails

A strange thing happened to me yesterday.

When I was a young man, freshly diagnosed, I was full of vinegar, keen to learn the science and seek out potential cures. Not snake oil, oh no. There plenty of these salespeople to be had. This was not it. I wanted science-based answers.

Sadly, there really was not much going on. I found myself sadly disappointed in my own industry, that would be the Pharmaceutical/Biotechnology industrial complex. There was just nothing going on; no commercial interest in X-ALD or AMN.

Nonetheless, whenever the Kennedy-Krieger Institute was looking to enroll for anything, I was down for it. While I may have helped the science grow, no cures appeared from these efforts.

Things change. I got old, and further progressed in my disease. But as I learned yesterday, my thinking had also evolved. Here is how:

Interest in rare and neglected disease, even X-ALD…

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Chapter 1

Walking the Rails

On Friday February 19, 1965, General William Westmoreland was on the cover of Time Magazine. Closer to home, Ken and Joan Gillespie were in the process of welcoming their second son, Bradley Kent Gillespie into the world. That would be me. From what I am told, I was not the easiest baby. I seemed to get into most everything, and I disliked women. As the story has been told, I did not like to be held by the ladies and I shunned their kisses. This is likely superfluous. About all of the background needed to tell this story is the understanding that unbeknownst to Ken and Jo, I leaped out ready to party, except for that one pesky strand of DNA. This faulty wiring would end up greatly determining the roles that I might play moving forward.

Skip along a few years….

Of course, I had always been the clumsiest…

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Scoring Your Disability

If you ever wondered what an EDSS score gets you, please have a look!

Walking the Rails

I do not know diddly about the Stages of MS Chart, but I have some familiarity with the The Expanded Disability Status Scale (EDSS). It was developed to keep track of MS patients and is also used for AMN. Well. At least it was for me. I do not expect that there are enough AMNers to make it worthwhile to develop its own instrument.

EDSS is kind of like golf: the lower your score, the better. That is not to say that you should be competing against each other.

It seems like I was a 2 for the longest time. Which for whatever reason, I was proud of. I really had no idea of where I fall on the spectrum these days. So, I had a look. I expect that I am a 7, and have been for many years. But maybe not a solid 7?

Not totally…

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Please Give A Big Welcome To Brad Gillespie Who Joins Survivors Blog Here






















I’m so happy to share that Brad Gillespie has joined Survivors Blog Here. He embodies everything we stand for, adversity, strength, and moving forward with his life.  Brad has been diagnosed with Adrenomyeloneuropathy (AMN).

The cliff note version of the illness is: Adrenomyeloneuropathy (AMN) is a form of X-linked adrenoleukodystrophy. AMN patients generally have spinal cord dysfunction, which leads to the initial symptoms that include difficulties in walking or a change in the walking pattern. The average age at which symptoms first appear is 28, but onset can occur anywhere from the second to the fifth decades of life.

Instead of retreating, Brad found himself a single father of three children and had to forge ahead. Now he is sharing his story with others who find themselves in similar situations or who can relate to his circumstances and the trauma he’s experienced. 

I have no doubt you will enjoy posts, he is informative with a touch of wit. 

Please join me in welcoming Brad to the group, be sure to drop him a line a welcome him aboard. 

This is from Brad’s Contributor page, I thought his information would add value to this post.










I am just a guy with adrenomyeloneuropathy (AMN). While it can get nasty in some cases, I am one of the luckier ones.

I cannot walk, but my spirit and imagination are still working, as best as I can tell.

I look forward to getting to know folks in this community, tells some tales (mostly truthful), and with any luck, pick up some wisdom.

Have the loveliest day, folks.


Please welcome Brad to Survivors Blog Here! Be sure to check out his website and future post.



Walking the Rails Asks: Why the Arts? Who is this guy?

This fine-looking buck, William T Carls, was my granddad. He is pictured here, I am guessing, in the autumn of 1924 at the University of Illinois.

While of course this photograph is dear to my heart, this is not likely so for anyone reading this. Please hear me out. I see this as a critical reminder of the few stories that I have heard about grandad’s U of I adventures. Although these tales are nearing one-hundred years old, I see parallels to today, critical to us all, and important to share.

Gramps was an orphan, adopted by a poor farmer. In the environment that he was raised, graduating high school was a rare accomplishment. I expect that Gramps’ dedication to the arts was a bit unusual, also. He loved to draw, music, the literature, reading and writing poetry. I am told that his dream was to become an accomplished journalist.

Sadly for him, there was an uppity aunt, with undue influence, that insisted he study the law or medicine.

He matriculated at the University (the alma mater of Red Grange, both my parents, Dick Butkus, many aunts, uncles and cousins, myself and my brother- yes we were and are all Illini-proud) in 1924. I had few conversations with him about college, though one sticks in my mind: “while I did not often make it to chemistry class, very rarely did I miss an Illini football game.” That likely sums up his collegiate experience. He left after a semester, returning to the farm.

While I can never know, it seems like maybe he was not cut out for medicine.

So, back to 2021. As my kids roll out to college, all I hear is STEM, STEM, STEM. While my oldest will finish with her degree in Computer Science next year, the others are pointed in much different directions. And that, in my view is quite great.

Perhaps in 1924, becoming a doctor or a lawyer was the same thing as pursuing a STEM major today? Of course, I am nothing but science-based, with no gripe directed at STEM. At the same time, I have a huge place in my heart for the humanities and those that dare stretch their brain by learning the stuff.

It really takes all kinds to build a well-functioning society, and I believe that we would all be better off if we avoided the path of the uppity aunt, whose name I forgot.

Each kid has different needs. What truly matters is that they can do what they want to do, and be the very best at whatever that might be.

2013: Loose Ends

That was the end of the notes that I kept documenting my go around with AMN. I wrote the following, today, 2 August 2021, based on what I can remember. Looking at it all in retrospect, it seems like a continuous, drawn-out rollercoaster ride, with high highs, low lows, loop de loops and hairpin turns, now and again, for an enhanced experience.

Things continued as I thought that they should until sometime in 2011. I continued drinking my Oil and waiting for Trisha to finish the film. Everything seemed pretty reasonable. I had things figured out and knew what to do. No surprises. Predictability was good. I have heard it said that complacency can get you in trouble.

I got a call from Kennedy-Krieger. The promising MRI data was not corroborated by any of the clinical endpoints. “So, what does that mean?” I asked.

What it meant was, the potential benefit of taking the Oil was no longer greater than its associated risks. The boys at Kennedy-Krieger strongly suggested that I stop taking the Oil immediately.

About the same time, I heard that the lady funding the film had lost interest.

While I do not remember feeling let down, I cannot confirm this. I have no recollection of these times. We were preparing to leave California. I suppose that I may have been so consumed by that process that I did not have time to think about it? Who knows? I do not know what to tell you about that one. Which is odd, I had been so engaged, so certain and so ecstatic about what the Oil would do for all of us. To not feel anything at all did not make sense. I do not remember.

I do know that I kept it pointed straight ahead as I managed the arrangements to move myself and young family across the country.

We settled in Virginia, and it felt right. Maybe there was relief in no longer needing to restrict my diet and follow the regimen? Again, another unsatisfactory answer: who knows?

This calm did not last long. A new type of anxiety took charge. Strange new feelings and emotions, very foreign to me.

Tensions started slow at first, before accelerating and eventually growing logarithmically. It was rough. I thought I knew what was going on. I soon realized that I had no idea. Eventually, just as I thought it could not get any worse, on 6 May 2013, my family imploded. After a couple of weeks, the shock of it all subsided a little, but not much.

The smoke began to clear, and I took stock of my new station in life. I was alive, had a job and home. Which were good foundations. I was also now a single parent of three young girls. And a cripple besides. It was hard to figure how this might play out. My experiences in life were of no help. All I knew for sure was that I needed to maintain a stable mind (whatever that was) and do my best to prevent further hemorrhaging. I knew little about the finer points of raising children, all I understood were the basic needs: food, shelter, etc. The balance of parenting, on my own would need to be improvised as I went.

This was a fine kettle of fish, as some wise man once said. With all of the caution that I had exercised coming up, it was unfathomable that I could be in this state. But here I was. Maybe I could best understand it by trying to figure out the events leading up to that cliff in May?

Thank you Melinda!

Many thanks for giving me the opportunity to share my stories on Survivorsbloghere.

I am just a guy with adrenomyeloneuropathy (AMN). While it can get nasty in some cases, I am one of the luckier ones.

I cannot walk, but my spirit and imagination are still working, as best as I can tell.

I look forward to getting to know folks in this community, tells some tales (mostly truthful), and with any luck, pick up some wisdom.

Have the loveliest weekend, folks. Brad