It’s a rare occurrence that my traditional and alternative Doc’s agree.  Both camps concur that environmental factors play a role as a cause of ALS.  Our continued search for the best way to remove toxins has brought us to my newest treatment plan, one that uses chelation. 

Now I must say every doctor I’ve seen has tested for heavy metals.  And all, whether traditional or not, have been negative. Until now.  So what changed?  Our new clinic agreed to follow a process developed on Hilton Head Island.  Which is ironic as we lived there when I found out I had ALS. Besides taking samples from every orifice, you actually chelate for two weeks before they do sample collection.  Apparently toxins are tricky and can hide. Chelating for two weeks flushes them out for detection. 

Six weeks later all the test are in and we have a sit down with my Doc.  He rummages through all the results and declares “you have elevated levels of copper, aluminum and lead.  He said this as if this should mean some thing to us.  My only thought was I’m rust resistant.

He goes on to say I have some stuff in my system that are kind of common, but he wants to go after them with antibiotics just in case. 

With this we are off to the races fighting toxins and boosting immune systems. 

For the last few months I’ve been on a new treatment plan.  In December we scraped all previous treatment plans and our stable of doctors and hooked up with an alternative clinic just north of Atlanta.  This newly discovered clinic is a collection of doctors, naturopaths, specialist, therapist and folks unclassifiable.  Depending on your point of view ones impression could be what an impressive group of forward thinking trail blazers or I’ve just entered a twilight zone version of the land of wacky misfits.  I remain unsettle on it. About the time I start thinking all is normal, someone will launch into a rambling rant about conspiracies among FDA, insurance companies and pharmaceutical companies.  My main comfort with all this is how busy they are and the many patients who tell how they saved them.  I’m working under the thought that they are straddling that fine line between genius and crazy. 

My treatment plan is fairly simple.  I do a bi-weekly chelating IV drip and one of the unclassifiables hooks me up to a machine by placing four suction cups at various places.  These cups are tethered to a unit that sends electricity at low levels and frequencies for twenty minutes.  It’s really weird. 

Once a week I see a message, kind of, therapist. Her wall of frames says she’s had naturopathic training.  She will cross the line between genius and crazy four or five times a session.  But she has the hands of a healer, so crazy is, well, sometimes interesting, occasionally bizarre, but, in a word, ignorable.

More to come. 

 I continue to hold my own as we search for a cure for my ALS.  I started a new treatment in December that has had some success with ALS.  We are hopeful that it will work for me.  So far, we’ve seen some small improvements.

The activities involved with having ALS are well integrated into the daily “going-ons” of our family. Each member takes their turn feeding, shaving and brushing my hair and teeth. Linda does the bathing and dressing, for obvious reasons.  And she and Lexy share driving me around.  Thanks to my sisters picking up one day a week, Linda drives the two hour round trip to my treatments only twice a week.  This one day relief for Linda is helpful.

I’m not the one most affected as a result of my ALS.  For sure being sick is the pit’s, but, as a result all I can’t do is done for me.  Great care, expense and deference are taken to assure my comfort. I look at Linda, Lexy and Dani and how their lives have been altered.  Of no fault of there own, they had thrust upon them a responsibility most will be fortunate to avoid.  How many teenagers get up extra early to feed their parent before they go to school? Linda’s life is centered on my care.  Her level of subordinated self concern to mine is far greater then I ever perceived a caregiver needed to do. The saying that you can’t truly understand someone until you walk a mile in there shoes, to me, rings true.  The demands on a caregiver are relentless.  It has been a revelation how so.  Yet she and the girls remain optimistic and cheerful. They are a blessing to me.

The installation of the peg line (feeding tube) was the right move. I’ve gained weight and we are now back on offence after several months in almost complete retreat trying to deal with all the changes.  It had us worried that the day after the peg line was installed I caught double pneumonia. The days stayed in the hospital were a bit traumatic, a real test of my manliness. It has taken months to get stabilized. It has been only recently I could do email without one of my girls helping. I still use an on screen key board clicking one letter at a time. But its good to not need help.

Our May ALS clinic forced us out of our favorite place to visit; denial. There were facts that could not be ignored. We had to deal with them.

As the previous post said, Dr. C.  redeemed himself, kind of. In November he recommended an itergrated protocol developed by a highly respected Lyme’s Dr. in Hyde Park, NY. He prescribed B12 shots daily, an antibiotic shot four days a week and asked us to go see this guy. Did you notice the word SHOT. Linda was none to excite about poking a two inch 22 gauge needle in me. Frankly it has adjusted my attitude. You know an annoyed wife, armed…you get the idea!

We made it to New York in February and spent a half day with Dr. H and his staff. Their bottom line was “we believe you have Lyme’s disease, but don’t think it’s the cause of your ALS”. They tweaked my treatment regime and sent us on our way. This delinking of Lyme’s and ALS was a little confusing. Over time our doc’s pretty much determined staying our current course was the best option because, frankly, no other options were known. Cluelessness revealed again!

A side effort over Linda’s aversion to giving shots ensued with Dr. H’s physician assistant. The alternatives all required a prescription written by a doctor licensed in Georgia. After weeks of searching locally and being told no, we called our doc’s in Charleston hopping for a lead. Well low and behold they have a former associate they trained with a practice north of Atlanta. One phone call and one appointment with Dr. T and we’re set. Well, until Dr. T. (young female) question’s Dr. H’s (old guy) protocol.

We had five doctors and a potential turf battle brewing. YIKES!  Our quick fix for this dilemma was simple. They can all get together and hash it out among themselves. Which they did. We now have four docs. The southerners banded together and bounced the yankee. 

Parallel to all this craziness I went through two ALS clinics at Emory. The January clinic brought the respiratory team to bear as my breathing dropped below the 80% acceptable threshold. There response is machines, three of them, that I was being kind of passive aggressive about using. In May I got the ire of the respiratory team for not being good and everyone was hands on hips, finger wagging excited about my further weight loss. They started a full on press that I have a feeding tube installed. Ugh! We left with a lot to think about. 

Oh did I mention Lexy got her learners permit. Horrifying

I’m not sure were to start. Our search for a cure of ALS has been accelerated recently resulting in a collecting of additional clueless geniuses (doctors for the newbie’s). On the home front life has been relatively uneventful with one exception: Teenage-ness!  Wow…what a ride. What was God thinking when he thought this up? Don’t get me wrong, our girls are fantastic in so many ways, but the moments when the dark side of teenage-ness kicks in are jarring, baffling…well frankly there mostly annoying. A friend summed it up nicely when he said “it’s amazing how grown up they can be one minute and how infantile the next”. No truer words.

After three years battle to detoxify, immune system building and treating chronic lyme's disease, we hit a wall. For the last year there has been a steady loss of function and we seemed to have run out of natural remedies that will slow the losses and kill the cause of my lyme's disease. We also learned the company used to determine I have lyme's was discredited causing new test with a new company who’s results came back as, you wont believe this, they actually put this in writing: “INDETERMINATE”.

Before I comment on this, I’d like to diverge for a moment. This was revealed during a conference with the younger (40’s) of my two alternative doctors in Charleston. The older (70’s), recently semiretired founder of the practice has slowly yielded to his younger partner. This young gun is less a natural remedies purest and embraces the idea that an integration of natural and manufactured remedies can be helpful. Since Dr C’s introduction a couple years back it’s been amusing, occasionally enlightening, watching these two men spar over integrative remedies.

Now back to Dr. C and when he said “the test results are indeterminate for lymes”. Reflexly we ask: “what does that mean”?  The response was as affirming a moment as I think I could have that the “clueless geniuses” description is on the mark. Dr. C: ‘I’m not sure (long pause) I think their saying there’s enough there to indicate something but not enough there to say that it is something’. As if the use of the stupendously ambiguous word indeterminate was not enough, Dr. C lays an Abbott & Costello "Who's on first" like riff on us.

In my next post I’ll cover Dr. C’s redemption and how we add a couple of doctors.

Linda and I have to all, but immediate family, project our life as being relatively normal, despite my ALS. We thought this important to our families’ mental health and quality of life and until recently was maintainable.

Prior to a few months ago, my struggles had been in small degree changes in strength of my hands, arms, shoulders, swallowing muscles and ability to speak. For so long, the variations in my strength impacted, for the most part, only moderately what I could do. My hope since diagnosis has been to continue to do all functions I’ve always done, albeit slower, as we searched for a remedy.

Over the last few months my symptoms have progressed to the awkward stage. Of all the upper body function challenges, losing my ability to speak clearly has been the most life changing. Even though my thoughts are complete, getting all the words out intelligible has become daunting. Speaking has become a process and a labor.  All thoughts to be spoken go through a quick, in mind, editing down to a manageable word count.  My mind goes through the process of determining the maximum word count for the moment, as speaking strength changes throughout the day, while simultaneously searching for words that consolidate narrative, and have the fewest syllables. All this in hope I’ll be understood.  My guess is that I’m at 70% success. The mental gymnastics are tiring and frequently I feel awkward in fluid conversations. The effect is diminished comfort in social situations. The literature on ALS warns that social withdrawal is common. I’m now able to understand why. I’m thinking I’ll take this time to become a better listener.

After speech, fatigue is the next big drag. I’ve always had energy to burn. If I was a young boy today I’d be tagged as ADHD. Back in my day it was called hyperactive which my Mom’s doctor prescribed me running around the back yard to cure.  No happy pills for kids back then. Nowadays I get eight hours sleep an hour or two nap and any activity over a couple hours can slow me down pretty good. It's pretty much the same affect as my Dad’s 75 years of living are having on him.

Beyond less talking and reduced doing, it’s the small things that make ALS a persistent pain in the posterior. A good example is that I’m on my third adjustment for turning the key over to start my car. At times, I’ve had to ask someone to turn my car on for me. The puzzled looks as I drive off are precious. I have similar scenarios for pumping gas, cutting food, getting dressed, making coffee… it goes on and on.

Until my symptoms change designation from chronic to cured, my functionality will become more and more a team effort.

In May of this year we switched from the alternative treatment plan of the previous two years. I think I’ve explained in an earlier post that this previous protocol required me taking a boat load of various pills and a couple of extracts several times a day. All designed to boost the immune system, remove toxins or fight chronic lymes disease. The decision to move to another plan is steeped in the notion; one long held by Linda, that a nearly indestructible chronic lymes disease (CLD) is the bases for some neurological disorders and possibly mine. So this new plan will more directly target the elusive and believed chameleon like cause of CLD.

The “Cowden Protocol”, recommended by our Charleston alternative doctors, has roughly eleven thousand people who have or are using it with a reasonable rate of success. Yet, Doc Cowden was clear that ALS was by far the least successful under the program. This underscored what we realized early on, that killing ALS is an underdog endeavor. An endeavor with a David and Goliath like need for something jaw dropping to happen. With little hesitation we jump in for the recommended six month program.

Receipt of the first box of stuff gave me pause. We received a box with twelve one fluid ounce bottles of various herbal supplements and extracts and a couple of bottles of herbal pills. Along with two pages of instructions and twenty four pages of, at first glance, was thought to be a simple dispensing chart.  I thought, Hum? And then it hit me, Doc Cowden’s some kind of mad scientist. On closer inspection the pages read like a matrix, each box on the page laying out the potion to be mixed and the moments each day they are to be taken. I’m to this day unsure if Doc Cowden is mad or genius, but he or someone with him is clearly PhD level smart to figure out the potions formula and sequencing of their use. I must admit that from the back of my mind I occasionally recall the old saying; if you can’t dazzle them with brilliance then baffle them with BS. One hundred and sixty days into the program we are slightly more baffled then dazzled as my ALS persists. But the protocols fine print was forthright and clear that some folks might require up to four rounds before success. So with the faith of an Apostle that ALS can be overcome; we press on.

Two new pieces of information have emerged from researchers working to find the cause, therapies and eventually a cure for ALS. I’ve edited both into a readers digest version. These findings are the most promising I’ve seen yet.

#1: Researchers found that stem cell-derived motor neurons are killed by the glial cells that are supposed to serve them. The glial cells that normally surround and nourish motor neurons proved lethal if they had the mutation linked to some inherited forms of ALS.   The scientists took stem cells from mice with a normal human gene and also mice with a protein defect that produces the disease. The study demonstrated that glial cells carrying an ALS-linked mutation have a direct effect on motor neuron survival and provide a powerful tool for studying the mechanisms of neural degeneration. The scientists believe the stem cell derived system “could provide cell-based positive results for the identification of new ALS drugs.” The motor neurons from stem cells of mice with the mutant protein show, in culture, the hallmarks of the disease at the cellular level. They have abnormal protein deposits, consisting of the mutant protein, and increased amounts of the molecular tag that cells use to signal that damaged protein needs to be removed. Also, the motor neurons from mutant mouse stem cells show activation of the cell death pathway, another parallel to what takes place in the disease. It’s reported that the mutant glia are secreting a substance that is toxic only to the motor neurons and not to other cells. Future investigation with the new strategies developed by these research groups will undoubtedly produce important progress in the search for therapeutics to treat ALS effectively.

#2: Researchers have added to a growing body of evidence that implicates the immune system in ALS. Researchers found that mouse motor neurons carrying mutated genes known to cause ALS make proteins that are part of the immune system’s “classic complement pathway.” These proteins then signal neighboring immune-system cells called microglia, which may attack and kill the motor neurons. The data imply that therapies that interfere with the complement pathway or with microglial activation would likely be beneficial in ALS. Although it isn’t known whether these findings apply to nongenetic forms of ALS, there is evidence to suggest that these two major forms of the disease differ only at the very beginning and quickly converge.

Both sets of findings have important implications if stem cell therapies are to be attempted to treat ALS.

“It’s now clear that in inherited ALS the neurons are genetically damaged and start making proteins normally made by immune cells. But ALS is not just a disease of motor neurons. Neighboring cells are key to disease progression. These non-neuronal cells initially respond to the injured neurons, but when they’re damaged themselves, they turn them into clumsy, unfriendly neighbors whose action actually accelerates disease progression. One implication of this is that stem cell therapies to replace the damaged neighbors may be a very effective approach for slowing disease progression.

There is Hope!  

The neurologist I participate in studies with asked if I would sit in on a class of post graduate students he was lecturing to. I thought, why not, and it might be interesting to meet the up and coming generation of healers. As it was Valentines Day and the campus is downtown I asked that my afternoon thirty minute Q&A go first. With a house full of girls my responsibilities on this day are great. Failure to deliver in a timely manor would be painful for weeks.  

Through the introductions to this smaller then expected group of twelve or so it was reveled that most are in research. The instructor advised “they really don’t work with humans” he wanted them to get experience of how what they see in the lab translates in a real ALS patient.  

Speaking to a sun light and conversation starved group of kids who play with mice for a living was, well, uh, unexpected. My first impression was, oh no, another group of the smart yet clueless in the making.  

My second thought was clueless or not one of these folks might find the cure. So I figured I should take this seriously and try and be of value. Just in case.   

In a nut shell, they asked good question covering the medical to ALS’s impact on my family. They where interested, curious and thoughtful. The physical review was a little like being the subject for a group art class. Thankfully I was able to keep my cloths on.    

My take is the future might be ok if the rest of the up and comers are about the same.

I recently attended one of my thrice yearly Clinic’s at Emory. As you might recall this is where each discipline stops by to check my progress and offer advice on how to best deal with what ever changing conditions are occurring.

The sum of these reviews is a couple of scores that the head nurse pulls together. One is my breathing percentage and the second is a functional rating scale or FRS. My breathing is at 84%, down from 87% in September. Breathing above 80% is considered normal. My FRS only dropped 1 point to 40 out of 50 points. Essentially I’m in the 90 plus percentile, a good place to be as most are much lower.

The reality of things is that I’ve seen a reduction in my hand and arms strength. I’m unable to write except for scribbling a signature. I’ve determined that most institutions will take an X in the signature box if you show them an ID. I love the swipe and run systems that require no signature at all for purchases. Technology is an ALS endures best friend.

Speaking clearly has become much more laboring. There is a measurable increase in having to repeat myself. I worry that folks will mistake my slurred speech as alcohol induced, especially if they have a badge and I’m behind the wheel. I'm much more mindful of the laws of the road. A good thing…I guess!

At this juncture each day boils down to a measure of energy in relation to the tasks of the day. With ALS the energy used to do normal activity is far greater then the norm causing fatigue quicker and the need to recharge. Learning how to schedule activities is critical to maintaining the appearance of normalcy and getting through a day stress free. As an example, two big energy drainers are taking a shower and getting dressed to go out of the house. I do as much as possible to put recharging time between these two activities. It’s an adjustment having to worry about such things.

My neurologist Dr. Glass showed up this time. In a nut shell he looked things over, asked about the family and talked about some new neck braces I might need as time goes on. Our primary topic for review was the only approved drug for ALS called Rilutek. It supposedly slows down the symptoms. He talked me into it. I’ll start it next week.

The results of Linda’s 78 year old Mother’s tumor surgery was not good. The tumor that was removed had consumed her female area. The surgeon also removed spots from other close organs. All were cancer. A few days later a MRI revealed small cancer spots in her lungs and her oncologist confirmed it is in her blood. The traditional doctors do not give her much hope and estimate survival at nine to twelve months. Linda is going through frequent bouts of sadness and anxiety and spends much time letting God know that we would like her mother around much longer. It is a difficult time.

We have moved into finding hope mode through our alternative treatment sources. We had our first conference call with an integrative medical doctor I go to. He has worked up a program that she will start in early June. Ursula is going to try chemo starting the second week of June. We will apply the acquired knowledge of the alterative medicine world that we use to fight ALS. As we maintain our faith in God and His ability to solve this problem, we hope that all we know will put Ursula Dayle on their prayer list.

I recently had my first visit with my new Neurologist and his staff at the ALS Clinic at Emory University Hospital in Atlanta. These guys have been working the MS & ALS problem longer then the Mayo Clinic in Jacksonville. It shows in their approach and attitude. They communicate with more definitive language and with greater detail. I liked it.

They have about 200 ALS patients. Their experience indicates that I have a slow progressing form of ALS. Contrary to what I thought, how ALS starts is how it progress. So my slow start will mean slow progression. As well, they are curious as to why my lower body shows no ALS symptoms yet. This is uncommon two years after being diagnosed. All this was good news as this gives us more time for something miraculous to happen.

I’ve agreed to help the Doc’s out with some trials. So I will be going to the clinic once a month to have EMG’s done on my curious legs. EMG’s are needles and probes that send electric shocks into muscles and nerves testing their communication, strength and working order.

One commonality between the traditional and alternative doctors is their use of electricity in some form or another. I wander about this?

Linda and I don’t divulge our thinking that the alternative medicine world might solve my issues. Reason is that regardless we intend to overcome, somehow, this disease and they would think us slightly delusional. So we just motor along doing what seems right and pray that one of the ideas will solve the problem.

And for any reader who thinks we might actually be delusional, don’t worry. We find it a comforting place to hang out sometimes, but we don’t live there.