This is the last post to this blog.

I've missed a couple of months entries here because of other interests. More about that in a minute.

Two days ago I hit the big 70 mark… and as the man said, "If I had known I'd live this long I'd have taken better care of myself." But since the health issues I now have are something that was beyond any known human control, I guess that I didn't do too bad over the long run, all things considered!

I started this blog last winter to chronicle my experience with the little known drug Naltrexone and it's low dose usage for neurological conditions. As it stands now, after a number of months, I think I can safely say that it has not halted the progression of the symptoms. I can not, however, say that it hasn't slow the progression, since I still take my daily dose. I am reluctant to stop taking it just in case there has been a limiting effect on the progression of symptoms. My fear is that if I stop the use of LDN, I might experience a spurt in continued deterioration… and since the cost is minimal and I can honestly say that I feel fine generally, and since it does help with at least one symptom, I'll just keep on taking it along with my other supplements.

Therefore, this is the last posting to this blog since I have other more important things to do with my time.  In July I moved on to a piece of property I purchased on Canyon Creek just outside of Granite Falls. There is a modest "A" frame cabin on the 1/2 acre that needed a bit of renovation which I am deep in the middle of. And since I am happier in the planning and execution of remodeling work than I am writing this blog…  that's what I'll be doing for a while.

It's very pretty out here, where it's a short 4 minutes to a small hick town with everything I need in the way of services, where there is no rush hour traffic ever, where bald eagles fly along the creek looking for a salmon dinner, where the neighbors mind their own business, and where the cost of living is reasonable… so here I'll stay, and when the remodeling is finished I'll just sit back and ponder life's bigger mysteries, such as why lint collects in my belly button. And if I figure out the answer to that mystery I may write another blog detailing my research.

I am now convinced that LDN is actually working on at least one of my symptoms.

There are various little aggravating things that a neurological malady inflicts upon your body; yawning, emotional swings, loose bowels, muscles that don't do as they're told, and frequent, sudden, irrepressible urges to urinate.  The urination thing, I've been told, effects women as well as men, and is separate from  the other male urination problem related to the prostate gland.

Three times over the last 4 months I've stopped taking my nightly dose of LDN for a couple of days. Each time the result has been the same, the sudden, frequent, irrepressible urges have returned with a vengeance.

Returning to the nightly dose normalizes things within a day or two.

As far as the other symptoms are concerned I can't say if there is any change... and it really doesn't matter as long as this particular symptom is controlled giving me relief from at least one vexatious problem.

Perhaps the other symptoms will respond over a longer time frame.

Other things I take daily are these supplements; Glutathione, R-Lipoic Acid, and CoQ10,

all of which are alleged to have some beneficial effect as reported by other people with ALS.

All can be ordered online at amazon.com

Nothing exciting... and that suits me fine.

Another month of wondering how long I can maintain the current status of getting no worse, which isn't quite as good as getting better... but under the circumstances I'll go with it as it is, and just be thankful that the symptoms aren't any worse than they were last month.

One thing is disturbing to some extent, not personally disturbing, just disturbing in the general scheme of things. In this last month I've learned of two more people that have been either diagnosed with, or died of ALS. They are or were acquaintances of, or family members of, a couple of old friends, and in almost every conversation that broaches the subject of ALS I hear of yet another case. Makes me wonder just which of the multitude of chemicals that we are subjected to everyday is the primary cause of this and other neurological maladies. And now the Veterans Administration is saying that people that have served in the military are recognized as being more prone to having ALS than individuals without military service and is allowing disability benefits to veterans with ALS.

In my case voice is probably the biggest hassle. There are good and bad days, sometimes it seems everyone can understand me, and then other days no one can make any sense out of my mumblings... including me.

Arms and legs are still not showing any deterioration with the exception of the fingers on my right hand. Not sure how long this has been the case but the speed of movement of my fingers on that  hand aren't as fast as the ones on my left hand, and one very curious thing has been happening for at least three months but seems maybe to be lessening from when I first noticed it. When I yawn, my right little finger, and the two adjacent fingers, spontaneously curl in toward the palm. The three fingers do not share the same strength of this activity. The little finger is the most effected, the next one is a little less effected, and the middle finger is effected the least. However, strength in this right hand isn't compromised... I can still pick up quite heavy objects  like bricks and five gallon buckets full of water.

One other curiosity. I can not voluntarily smile unless I actually think of something funny.  The act of smiling without inner or externally generated humor is just not possible. And then the smile is impossible to restrain.

Still on the LDN at, I believe, 2.5 mg per day. Which is half of what is believed to be the most beneficial for conditions such as mine. I cut it back early last month when I thought that I might be experiencing contra indications.

Remember, if you hear of someone being diagnosed with a neurological disorder, pass the word about LDN.  

See ya again next month.

Now on full dose of LDN.

It's been about three weeks since my last blog entry here, and about the last week of that time I've been on the full strength dose of Low Dose Naltrexone. About the only remarkable thing is that the dreams seem to be remaining persistent... and to some extent, off the wall.

It's a good thing that there's nothing to report other than mundane things such as dreams, and I'm thankful for that.

Earlier today I was reflecting on the last 12 months, and that last year at this time I was fully involved in a fairly extensive refit on my little 26 foot ex Navy Motor Whaleboat.  I remember being consumed by the idea  that I better get a move on and get the project finished before I lost the use of my hands... or maybe my legs... to the progression of this disease of slow disintegration.  But here I am still walking and well able to use my hands to hammer and saw with... which is what I'm back at, tweaking the interior of my boat again.

One common symptom that's shared by both men and women is the frequent and sudden urge to urinate. This urge, when it occurs, comes on with no warning.  A woman, in Canada, that I exchange emails with occasionally that has been on LDN for a lot longer than I, told me that the disappearance of this troublesome urge was the first thing she noticed after starting on LDN. I'm still trying to evaluate whether or not that is true for me, since I may also have the common male problem of going and going and going....  It does seem a little less frequently though.

Fianlly, I appear to be going through short periods of being able to speak a little more clearly, but I'm not convinced that it's more than an anomaly and will wait to call it an improvement until it can be demonstrated over a period of weeks at a time.

Next entry May 1.

End of first month on LDN

Now up to 3.3 mg LDN nightly. Sleeping well with some fairly creative dreaming... most of which are better than the average TV fare.

I've always been acutely aware of the passage of time and the fact that you can't bring it back for a do-over.

In my normal everyday use of time as a measuring stick time has always passed inordinately rapidly... forever flowing with great haste into the past... unstoppable... unforgiving, easily measured by the accomplishments, and/or disappointments of the time we spend awake each day, and wishing that it would slow down a bit.

Now, instead, I spend my time wishing that time would speed up a bit in order for me to be able to see or divine any increase or decrease of symptoms in a more compact period of time that might tell me whether, or not, this affliction is being affected by the LDN.

It's not all time related of course, since measurable changes in any one symptom are devilishly difficult to sense because they are so incrementally small, it all being complicated by those those changes occurring so s-l-o-w-l-y over such a l-o-n-g time frame makes them even more difficult to evaluate.

Most recently, for example, I thought that I was experiencing more difficulty in drinking with a straw since I seemed to be allowing air to be sucked in when I sucked on the straw because my lips weren't strong enough to seal properly around the straw. It's been almost a year since I've been able to drink successfully from a cup or glass or anything else without using a straw, so you can see that this issue could be pretty critical for me. About a week ago I seem to have gotten past that air leak and am now pulling liquids into my mouth successfully. But I'm really not sure it it was an escalation in the swallowing symptom, and if it was did the LDN assist in blocking or moderating this particular symptom or not.

However, once the liquid is in my mouth, easily swallowing it is another challenge. Frequently, attempts at swallowing, are just that, an attempt, over half the time, swallowing a liquid ends in coughing, or having the liquid go up my nose, or being spit out. Increased production of saliva is another of the accepted telltale symptoms of ALS and can be as big a problem as swallowing any liquid.  Swallowing solids isn't at all difficult though.

Speaking of solid food, and I'm not even sure if this is a symptom of ALS or any other neuromuscular disease or not since I haven't seen anyone else report on this little phenomenon. Sneezing! Usually at breakfast time with a mouth full of well masticated food, a strong urge to sneeze will make itself known and give me just barely enough time to get a napkin or my hand in front of my mouth before a category 5 sneeze erupts. Happened again just this morning as a matter of fact.

Since things evolve so slowly I'm changing the frequency of new posts to this blog to monthly starting April 1.

DAY 14

LDN I'm told is best eased into over a period of weeks, starting with about 1.5 mg, and peaking at 4.5 mg a day. Part of this reasoning is that it seems to increase the dreams the person has. Some report that they are usually unpleasant dreams. For my part I initially had more dreams over the past two weeks that I can remember on waking than I have had in a long time, most of them fairly benign. However, the first dream on the second night of taking my nightly dose of  LDN was a fairly serious with slightly humorous overtones type dream.

In this dream I had been commissioned, apparently by some government agency, to help Pres. Obama understand the singles dating scene in Washington D.C.  I swear this is not a made up dream. Although this one would be fairly easy to embellish, I, in the interest of science (or whatever), promise to tell it as I remembered on awakening. Please keep in mind that at almost 70 years of age I am hardly the expert on singles dating... anywhere.

In the dream he and I were driven from bar to bar all around Washington, D.C.  In each bar we stayed in the darkest corners while I pointed out the various stages of male tracking female (sometimes vice versa) and the body languages involved. As dreams go it was a fun one, nothing wild happened and it all unfolded in a logical sequence of me as teacher and him as student. He made no comments or action other than to listen to my dialogue, and take notes. Now you see how I could easily embellish this into something that would be found in one of the supermarket Tabloid rags... and I really wanted to.

The other dreams have all been run-of-the-mill stuff, and even now have tapered off to the kind that evaporate on waking.

The only other remarkable thing that has occurred since starting the LDN is that my stools, which have been really soft floaters for over a year, turned into firm sinkers in the first three days of LDN. I've tried every diet modification I could, more fiber, etc., with no success over the last year.  So on that front (or back if you will, sorry, couldn't help it) I'm very pleased.

DAY ONE - FEBRUARY 10, 2010

LDN was brought to my attention by my sister, she learned of it through a connection she had with the ALS Association in Oregon.

To increase your knowledge about LDN and the many medical problems it has been reported as having beneficial results for, go to:   http://www.ldninfo.org/index.htm#What_is_low_dose_naltrexone

Finding a physician in Northwest Washington that knew about it was a challenge. Thanks to the Internet, and a flood of email's I sent out, a lady in Eastern Canada provided a list of about 20 Dr.'s in Washington that might be of some help. From that list I selected one to contact and she, Dr. Elissa Mullen, ND, in West Seattle, not only knew about LDN and uses it herself proactively, AND does her own compounding which saves having to find a pharmacy that does it. She can be found at: Seattle Wellness Programs


I'll be posting to this blog on bi-weekly basis with notes on things I notice about changes in my symptoms. This will be as much as for my own recollections as it is for Dr. Mullen to follow my progress.  The prescription is not only low dose, but low cost as well. A months supply is about $30. Considering what big Pharma is doing to prices for life critical medications, this is a bargain by any standard.

SHORT BACKGROUND

My symptoms first showed up around the spring of 2007.  I wasn't aware of anything unusual, but a business associate commented that it sounded like I was drunk on a couple of mid-day phone conversations we had. Made me wonder if he had something wrong with his hearing.  Months later I began to notice a hoarseness to my voice. Over the next year my voice got progressively worse and speech became more slurred. By Spring of 2008 swallowing liquids was beginning to be difficult... it would go up my nose instead of down my throat. Throat Cancer was on my mind because of these symptom... so I stopped smoking.  By fall  of 2008 I decided to go in for a Dr.'s opinion. After many tests, and further decreases in my ability to swallow liquids when sipping from a glass, have to use a straw now,  and a voice that has turned into something like you expect to hear out of Chewbakka the Wookie in Star Wars... I learned what ALS was.

THE FUTURE

In the long run all I want to do is stop the slow progression of symptoms. That is what LDN is reportedly good for. But since the drug companies can't make windfall profits from it, they don't want to do any formal studies, and it doesn't bother me that almost all information about its beneficial effects at this time are anecdotal.

I've also been taking; Glutathione for about 4 months and thought that it might be helping, not so sure now but will continue, and R-Lipoic Acid for about a month.

Symptoms are really hard to identify in early stages, for example, how do you decide if something like stubbing your toe is an increase in symptoms, or not, since I can go back in my memory many years and remember some heroic toe stubbing incidents. In the same way, the subtlety of the changes in my voice have not allowed me to define any one moment in time when I noticed a change for the worse. Was it just a sore throat or a new symptom?  Instead of definable moments in time that made me think I was not well, it feels like a long slow motion slide down an infinitely long incline, realizing only by looking back every once in a while how far you've slid in four or five months.

More in a couple of weeks.