Don's ALS Page

(Page last updated: October 6, 1999)

(Note:  This is not a source of ALS information, but simply a journal of my thoughts,
              hopes, fears, successes, and failures, as I progress thru what most likely will
              be the final phase of my life here on this earth.)

Hi!  This page is just one link from my Pasco Jungles web pages.  There is a home button further down that will take you there.  Speaking of the Pasco Jungles, this is what it looks like from the air:

Peaceful looking, isin't it?  The dark area near the top right is a pond.  Sometimes, deer are drinking there.  The rear line of woods goes back about another 400 feet...lots of space for wild life.

OK, back to the topic..ALS:

What is ALS?

Initial Diagnosis

My Journal

Disease Progression..by the numbers

What is ALS?

Amyotrophic lateral sclerosis (ALS) is a fatal neurological disorder, characterized by progressive degeneration of motor cells in the spinal cord and brain.

When the motor neuron cell can no longer send the impulses to the muscles there is increased muscle weakness, especially in the arms and legs, speech, swallowing, breathing. When muscles no longer receive the messages they require to function, they begin to atrophy (waste away). ALS is very often referred to as "Lou Gehrig's disease." Neither its cause or cure is known.

Initial Diagnosis

July 7, 1999, Dr. B. sadly told me the long series of tests pointed to ALS as being the source
of my health problems..primarily poor breathing.  This diagnosis was further concurred with
by a Dr. K. the following week.  Dr. K. started me on Rilutek for a three month trial period, handed me a book with some information for ALS patients, and their caregivers, and sent me
on my way!

My Journal

July 15, 1999.  The diagnosis was totally a surprise for me.  I had been taking many tests since last February..heart stress test, x-rays, blood tests, breathing tests..which showed I only had
45% of normal capacity, cat scans, more x-rays, more blood tests.  None of these tests
pointed to the source of my problems.  The pulmonary specialist, a Dr. W, ruled out lung
diseases or any problems with my lungs.  Said he suspected a nerve/muscle problem and
referred me to Dr. B, a neurologist who ordered EEM and NVD (and I may have those letters wrong) tests, and did say, ALS could be the problem.  I had no idea of what ALS was at that time.  I came home, and surfed the web..found TONS of information on ALS..and recognized many symptoms..as matter of  fact all of my symptoms fit ALS..and I had no symptoms that did not fit ALS. Test technicians are very good about not revealing the results of tests they are giving, but it was not difficult for me to figure out I was "flunking" the electric shock test and the stick pins in muscles test.

Yet, I still was in shock, as was my wife Joyce, when Dr. B. pronounced his diagnosis...I knew he was right..my body was telling me even as he spoke..leg and arms were "twitching". (There
is a particular word for this, but it is the result of muscles "wasting away".)  I have tried telling
my body to stop this twitching nonsense..but so far it is ignoring me.

How do I feel?  Today I do not have the severe crippling effects that the latter phases of this disease wracks upon a person with ALS..oh, known as PALS.. I am now a PAL.  In hindsight,
I think I have had this disease for at least two years...seems to have started at about the same time I retired..June 1997, age 65.  I had worked at the University of South Florida for 23 years doing my part to add to the Y2K problem! ..hey, who figured I would write stuff that would last so long!  I am also retired from the United States Air Force, where I was also a programmer.  I actually liked programming!  Anyway, not too long after I retired I began to notice that I did not have as much strength as before..but I figured that came with age..was having difficulty in walking..but x-rays show advanced arthritis in lower back, right hip, plus I have a knee that hurts a lot..that explained that.  But I got cramps in my hands quite often, pains in my legs, and finally, in spring of this year, difficulty in breathing.

Today, I am just about the same..expect can not sleep on back, not enough air, can't walk far..got a handicap parking sticker and always use electric carts where possible, and can lift less all the time.  But I am still mobile.  I do have beginning swallowing problems, but as I had this kind of problem years ago, due to acid reflux (had to have several "roto-rooter" jobs done), and I faithfully take Prilosec..but, as I was saying, I had already learned to be very careful eating and what not to eat so I may already be doing what ALS patients should to minimize chocking problems.  Of course, I understand that the time may come that I simply will not be able to eat..or to walk..or to use hands..or to talk.  I try not to focus on these aspects of my future..I am not there yet and maybe it might be a long time before I get there.  I am trying to learn to focus on positive aspects.  Positive aspects?...doesn't that sound wrong..what in the world could be positive for someone having such a horrible disease?  Well, the opportunity to take advantage of what good time you have..the opportunity to get affairs in order..the opportunity to mend fences before you are on a death bed..and some other things I won't write about.

This difficult road is difficult not just for me, but for my wife Joyce.  She has her own health problems, but I have no doubt at all that she will take as good care of me as anyone.  Maybe we can be an example of what is meant by "better or worse" when you take marriage vows.  So many people seem to treat marriage as some kind of 2 to 3 year trial, and if it is not what you want just end it and try someone else out..rather than stay and try to fix the problems..I know..sometimes that may be difficult when dealing with abusive spouses.

Guess I will end this initial entry to my journal...expect much more as time goes by..I don't intend to write a "Tuesdays with Morrie", but maybe, just maybe, my wife and I can be an example of dealing with a death sentence disease.  I have always been taught that the Lord will not give you more than you can bear..this is my ultimate test.

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July 17, 1999

Wow, I sure have received some very nice supportive letters.  But a couple of people, including
family, have suggested that I am negative!  Huh?  Negative?  I am not denying my future..just
trying to honestly accept it!  So is that negative?  Well..yes, in a way it is.  I understand what they
are gently trying to say.  So, I will take the stack of materials about ALS, specilized equipment,
etc., and set it to one side..until I really need it!  I am doing quite well now..so time to focus on
the good..and deal with the other stuff when the time comes.  So, far less talk about this ALS
for now.

I really want to share the following letter..it is not about ALS, but more about what we can
do thru this electronic medium we are using.  A little history.  About 15 years ago I established
the first ListServ list at the University of South Florida.  It was just a simply list I called "The
Daily Word".  No, not a religious word.  I had one of those huge unabridged dictionaries and
each day I would post a single word..along with meaning and origin..and write a sentence
demonstrating use of the word.  So, just a simple list as the University wanted for testing..no high
volumn stuff.  First, it was just local, but after it got on the List of Lists, I started getting a number
of other people.  I also started adding a few little personal comments from time to time.  About a
year later I had a large world-wide following and was creating quite a lot of work for our system!
And..too much for me..I was susposed to be programing..so they shut me down.  Well, Susan,
the writer of the letter below, was in an isolated job environment, as many data entry types are,
and the list was a kind of freedom for her.  I liked what she wrote..so with no more yakking,
here is Susan's letter:

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Hi Don,

You know what? You were such a great person to work with. There were
a few things I'm pretty sure you never knew from me that now would be a
great time to share. Thanks for giving me and probably many others who
might not have said what they wished to have said, the opportunity to do so
now.

Remember when you blew the top off the profs capability, when you had
your great big distribution list? Nobody seemed to know it at the time, but
there is a terrible challenge in being a programmer and making everyday
communication with people a big priority so that there is balance in daily
living and the fight against isolation is won. You had to do it on a
greater scale, because there are millions of people around the world who
fight isolation in various ways but to me, what I found was in learning to
work with a machine all day, the suffocation was horrible. As a peon data
entry person; even as a supervisor it wasn't until several years later that
I'd get mad enough to think back and be really livid when you were prevented
from continuing your campaign to let the machine be the connection to people
that this type of work denies employees of.

In recent years I read statistics on the number of people who work at
jobs from programming, all the way to data entry who usually ended divorced,
or had trouble with relationships. I also remember your anger and attempts
to get people to speak about what the loss of that list would mean; how much
it must have hurt. I'm so glad that you didn't develop the apathetic
disease that seems to overtake people in the attempt to achieve 'status
quo'. Personally it wasn't until much later would it come to me, or would
I have the courage to have done something differently. I'd like to think
that now, I would.

You're kind of a hero to me. Here's why. Just like now, when you've
got this situation to 'process'--you're making it become something
valuable--by collecting data, by using your courage in a way that others
might never come to understand, and by being visible so that others can have
a beacon if they haven't been through as much as you have or yet recognized
that nothing is fair, lots of times life will go on--and true to the good
old 'Duck Dance' the rules are do as much as you can, keep a handle on
emotions by allowing them, and when in doubt--SHOUT.

I'll never forget thinking when you lost your 2nd wife---'boy if that
were me, how would I cope?' Having been newly married at the time, it
seemed a very frightening thought. That was all I ever wanted, to get
married and have kids. But I took note....you kept an open door to friends,
you made yourself keep going by giving yourself permission to find fun and
be good to yourself, and at least that good to others.

This year marks my 20 years at USF--until recent years, it's been my
only experience. Just was right out of high school straight to here. No
education. Through the computer, and my own eventual need for more than a
family and a burnout on supervising, they let me work 3rd shift, so I could
go to school and become a Sign Language Interpreter. It turns out my
husband started going pretty well deaf about 8 years ago---it took us time
to figure out the problem, just like you've been doing testings and noticing
things yourself.

I'm so thankful for your constant reaching hand. Not that it ever was
only for me, it's just that there are probably so many out there--people who
never leave their homes, people who prior to the internet had few options to
relieve that sense of isolation, whether it's job-related, or disability
related. You've always been a pioneer, and you continue to be today.

The greatest thing is that you've turned around the negative and made it
important for all of us who know you to not let anything beat us. Life is
what you make of it. It's a great pleasure to come to visit you in this
wonderful technological way! My kids are meeting people in other countries
way earlier than I ever could have. We learn it together. I want you to
know though that it was your determination and persistence that people are
naturally sustained only by people. Wouldn't it be something to get the
stats on how the rates of depression and coping have been reduced by
millions of ham operators around the world having reduced the need for
mental health??? I'll bet you anything it doesn't compare to the
inflammatory stories about the dangers of it....yes both are true...but both
ends of the extreme should be recognized. Now if we could just reach the
ones who haven't yet seen a computer and don't even have access to this
gift!

I'll keep in touch, and you do tooo :) Susan

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Any wonder I get a swelled head!

You can write Susan Key here:  SKey@admin.usf.edu

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Midnight, July 20, 1999

Not sleeping well.  Have to be sitting up to sleep.  Fell asleep at terminal and woke up later to find I had a large wet spot on front of shirt..I had drooled!  Crap, another one of ALS signs. Now starting to have a little difficulty in talking..not too much volumn and have to be more precise in how I say things.  But the sleeping problem is not good.  I don't get enough air laying down..even on my side.  First appointment I could get with any of the docs is Thursday..and I don't think he knows about this stuff.  I have read about various gadgets to assist breathing, especially when laying down, so I will see if I can get some help.  I am not sure the breathing is ALS starting to advance more quickly, or a reaction to the Rilutel..it says decreased breathing can be a side effect..great, the one med that can do any good at all, may also be adding to the problem.  I don't know who to turn to for advice..I dislike trying to interpret things for myself. But still no problems with the hands! ..or walking either, but that is slow anyway.  Got to remind myself to think positive.
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July 22, 1999 - A doctor who cares.
Today I saw Dr R, my family doctor for a number of years.  It is he who got me going on this trail of tests re: my original complaint about poor breathing.  This is the first time I have seen him since diagnosed with ALS.  He was both shocked and compassionate that the tests pointed to ALS.  He asked me what my ALS doctor has done (darn little..asked my if I wanted to take Rilutek..
er, no doc, I understand that will only prolong my life, why don't I just go ahead and get this dying business over with since there is no other treatment?..What A Stupid Question! ..so he prescribed
the med, gave me a book about ALS {put out by manufacturer of Rilutek..appeared to be out of date}, and asked me to return in three months).  Doc R asked what else?  That's all doc!..fend for myself best as I can.  Well I think he was quite surprised..ALS doc has a reputation of being quite knowledgeable about ALS...could be, but it does not necessarily follow that he is real great in taking care of ALS patients.  Anyway, Doc R noticed there was no biopsy test?.  Why?  Because ALS doc was convinced it was unnecessary..I had no indications of another problem that has ALS like symptoms.  Well, Doc R wants me to get a second opinion, and he is setting up the paper work to have me get an EXCELLENT second opinion..plus, if ALS, some indication of
my situation and maybe recommendations of procedures and things to do.  He wants me to go to the Mayo Clinic!  Seems the Mayo Clinic has a ALS clinic right here in Florida!  It is in Jacksonville, about 3 hours from where I live.  He said they would probably put me in the clinic for a couple of days, and a whole battery of doctors would evaluate my case.  Sounds like a good idea to me, so I told him to go ahead..I sure hope Medicare will pay for it.  Next, good doctor wrote me a prescription for an electric cart..he thinks I will need one soon and should try to get the paper work in now.  I was in a wheelchair today..not entirely needed, but walking is tiring and painful, but I found I don't have enough upper arm strength to move the wheelchair by myself..so if no one to push me, I will need electric..but then I find he is not the right type of doctor to prescribe such..so when I go back to do-little K, I will ask him for a prescription.  Finally, about breathing assistance, which is my main concern, he has asked my to wait until Monday where I am being squeezed in to Dr W's schedule..the pulmonary specialist..a good doc but I had not seen him since the ALS diagnosis. Doctor R. told me they may want to check me into a local hospital for a day to observe my breathing situation so they could prescribe the proper device for me.  So...nothing got done today...but wheels put in motion...we need more doctor R types!

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July 26, 1999.  Saw Dr W, pulmanary, today about breathing problems at night.  He felt that the BiPap device would be best for me.  So he has ordered one and will be delivered tomorrow. We,  Joyce and I, watched video on use and care..some work involved.  Dr W. had a short, but somber talk with me about the time I might need to breathe with a ventilator...and quality of life and what capabilities I might have left.  He said don't wait too long to decide.  I got the message, although difficult to reflect on..a living will describing exactly what I want..which might be to live only under natural means, if all other means of external communication is gone.  My father lay for six months, totally paralyzed (broke neck in fall from tall ladder at age 74), completely unable to
communicate, but completely aware of his situation..his mind was trapped in a body that would
not let him do anything other than blink his eyes.  I will not put myself or my family through something like this.

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July 27, 1999
BiPap machine delivered today.  Technician showed me how to use it, set up mask, fit
OK, turned on machine and Yech!..was harder to breathe!  Well, was some adjustment
needed.  Since they did not do a sleep study, the doc had guessed on original settings.
Will try tonight for first time to see if I get more than 1 or 2 hours sleep.

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July 29, 1999
Nothing is going to be simple.  BiPap machine left me with extremely sore throat.  It is rather difficult to get mask right, will take getting used to, plus kind of noisy..bothered wife a lot.  They tell me I need to add a humidifier to overcome sore throat, but to watch out for congestion!
Great!...think I now know why some people have sleep tests first...to make sure exactly what treatment is useful..and what is not.  Psychological downside:  this device, with motor, hoses, etc, is the first outwardly physical indication of the disease wearing away at my muscles and nerves.  I hope that if I am seen by Mayo that they will determine what help I need..maybe I am premature with this gadget..I could not tell that it helped.
 Friends took us to a stand-up comic nightclub last night..that was a nice diversion.
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August 2, 1999 ... another one of those ego-swelling letters!
Well, I am about the same..think I sleep about 2 hours every 2 hours or so around the clock!
Sometimes laying down, but just as often sitting up..sometimes at this terminal!
I have received a lot of wonderful mail, not only from family and friends, but also from cyber-
friends I have made these last several years on the Pfaff lists.  The following letter, reproduced
with permission, contains elements others have also written, but also kind of explains why I always tried to help people..I receive such nice thank you messages!  So, here is one representative of what many others have written me:

"Well, Don, with your excessive amount of cyberspace friends and acquaintances, I am sure you will not recognize my name at all....the last time I wrote you concerned a friend with the Happy.exe worm. You kindly helped her rid herself of that little annoyance, as I knew you would. My same friend told me recently about your diagnosis . I visited your site, and read your journal."

"I just wanted to let you know how much you have helped me with my little computer/sewing software problems, how many times I have given your name to others in similar distress (see paragraph above!), and how you have garnered a quiet respect and admiration from those you may never meet! My hubby, a wonderful man in his own right, is completely computer illiterate - BUTTTT - I always knew I could count on "Pasco Jungles Don" for the answer. Knowledge and experience, of course, are wonderful things to have. You, however, enhanced these gifts even more with the generosity of spirit which allowed you to share with all of us Pfaffies (and other computer sewists). I cannot tell you how many headaches you have made disappear (I also sell and teach Pfaff machines and software, and invariably, as I was racking my brain trying to solve a customer's problem, I would find the answer posted, by you, online to a fellow sufferer...)."

"I just wanted to let you know that you are in my thoughts and prayers. Please see as many doctors as you can...get those second and even third and fourth opinions...let others help you with this problem as you have so generously helped others in the past! And please, keep in touch with all of us through your keyboard. My deepest regards and kindest thoughts to both you and Joyce.."

June Jucewicz/MI

Now folks, how can you say I am not blessed?  Thanks June.
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August 12, 1999
I had really wanted to write this earlier, but alas my PC died.  CPU cooling fan had been failing and causing extremely erratic operation.  So, this old Gateway2000 486 case now has its fourth motherboard/CPU replacement..now a AMD K6 350 mhz..well I am getting there, a couple more disasters and I will have it up to decent speed!
But I wanted to write about the difference a day can make.
Last week, daughter, her son, and our other grandchild were all with us..fairly rare situation.  So I suggested let us all go somewhere..Silver Springs (Florida)..just got to have a wheelchair.  Well, the Springs is about an hour and half from here (Wesley Chapel) and wheelchairs are first come first serve.  OK, so we have to leave early.  Well, they kind of hedge and said maybe another time, after we have already got a chair.  No, I may not have another time and I certainly will feel no better then, or at any time in the future, than I do right now.
OK, so we go.  About a mile from  house there is a bad intersection, especially at 7:30 on a weekday morning.  There is an accident there..a cement truck is on its side.  But we were able to detour.  Went to Springs..had great weather, great day, took some great pictures and made some great memories..everything great.
Next day, I am reading in the paper an article about the accident..seems two people were killed..the driver of the cement truck, and the 60 year old lady who caused the accident by crowding the red light.  The dear lady lived two doors down from us.
We never know..at least ALS has taught me not to wait.
So...next entry may be a few days away also...I've got another "don't wait for another day".

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August 25, 1999
This entry covers the time frame Aug 13 to Aug 25.  Joyce and I decide to take a fews days off to just go where ever we felt.  Not to visit people, or big events, mostly just for quiet time by ourselves (we left Muffy with DD).  A general comment or two.  While we enjoyed the freedom of the trip (no reservations, etc.) I found it to be quite tiring. ALS seems to be progressing more rapidly..this month's (August) numbers are not going to look good.  I was almost always tired, and eating is a very slow process..plus I eat very little..lost about 10 pounds.  Joyce drove all of the time after first day..I was just too sleepy!  So, after first few days I stopped taking Rilutek..what is point of travelling if I sleep all the time!  Got a little better, but now am back on the Rilutek..let's see if it can slow things up!  Talking is difficult.
Gastonia, N.C.  this is some mecca for fabric people!!..JoAnn's fabrics, or something.  Joyce spent hours in the building while I sat in Mall and talked with other abandoned men.  Must have been a good stop..good thing old ancient Lincolns have huge trunks!
Tennesee...at some motel, got quite a fright..and probably a preview of the near future.  As always, I sleep a lot sitting in a chair (one of my motel criteria..must have a decent chair for me to sleep in).  But, I was in bed, awoke with severe leg pains..legs were like two sticks of wood without kneecaps..eased sticks on to floor so I could work out the cramps..but I collapsed!..I fell to floor..legs would not support me at all!  Joyce was asleep...thought about calling to her..but don't have much voice volumn..and maybe pain will go away.  After a while it did, but it was frightening to see how fast my legs could become useless!
Nashville..Opryland Hotel!   My My..the place is even yet bigger!  Joyce and I spent our honeymoon here in 1991 and we promised ourselves someday we would come back.  Well, did not seem like we should wait any longer.  Spent 2 days here (this place is not cheap!), at their cheapest rooms (which were better than any other place we stayed).  They had added a water ride area to the building..about a third larger now..larger being measured in acres, not square feet! Of course, I could not walk. so first day I got free wheelchair..but too difficult for Joyce to push, so next day got electric scooter.  Soon found out that the hotel is not big into handicap access...
doors are difficult to get thru...usually had to wait for some kind soul to open if Joyce was not with me..trails..and their are TONS of them, sometimes led to steps!..with no way to get around in wheeled vehicle.  The paths were often quite curvey, thru very dense foilage, and not all that easy  to maneuver in a three wheel vehicle...and alas, that led to my little "disaster".  Joyce and I were on some  elevated walkway, got to end and found only stairs..so I asked Joyce to wait downstairs and I would find an elevator and try to get back there.  Well..did I mention that it is a BIG hotel!  I finally got at her level, or so I thought, but got kind of lost in a really dense, curvey area.  The pathways were cement paths thru gorgeous plantings.  Well, on one particularly sharp curve, I forgot that the back wheels don't track behind the front, and rear wheel went over edge of cement..and cart started tipping over!..not a thing I could do but land in a nice beautfil flower bed with cart trapping my legs!  No way I can move!  So I wait for someone to show up..there are 100's of people in this place!...but none came down this little side trail!..I waited for what seemed like for ever..and no one!  So, I drug myself out..scratching leg accross cement and
really messing up the beautiful flowers..finally got up and was able to get cart back on trail.  Felt kind of bad about messing up their flowers.  We rode their little boat and generally enjoyed our stay there.
Next day..went to another place..something like a year long Christmas sales place a few miles north of Smokies.....trunk sags some more. (oh oh, out of sequence..this was before Nashville).
Went on to Hancocks...although I think Joyce didn't realize this was more for quilters, than for fabric collectors..still, trunk sagged a little more.
Heading back..not a good day.  We had taken a little side trip in the Ozarks, and were running low on gas.  Stopped at lone station.  When I got out of car, I noticed that a rear tire was flat..no wonder the trunk sagged!  Well, the spare on the old Lincoln has never been used..and it is one of those tiny spares.  Some kind soul changes the tire for us, but it is half flat...and the air pump at the station was broken.  Well, the husband of a lady who worked in the station came out, got the wheel with large tire, and came back with decent looking used tire.  For his work, time and tire he only wanted $40!!..pretty nice people here in Kentucky!

(following is from the Pfaff List, where I described my wife falling asleep while driving at about 75 MPH on I-24!)

<< Don...So...exactly who was the co-pilot? >>

Well it sure wasn't me!! Strange, I ALWAYS fasten my seat belt, but my first hint of a problem was bouncing around in the car! Seems my belt was NOT fastened.. I think I fell asleep fastening it, but Joyce did not realize it was not connected..and there I sat, in a sort of fog, seeing the road thru the driver's window, and it is too far from where we are, and here am I holding on to a seat belt that I will never get fastened before this thing wrecks! But I don't recal panic, just told Joyce "Love, you are not on the road"...we were very fortunate..no where else along I-24 could we have left the road as we did without hitting something.

Headed back via Chattanooga.  Went for an absolutely delightful river boat ride!  All elements were in sync..the weather..gentle breeze..relaxing background music..river panarama..all combined in making a total involvment in the senses and the environment becoming as one in peace and harmony..for a short time, all was well..not a single pain, worry or concern..wonder if I got a glimpse into the next world? ..if so, it is nothing to fear.

Stopped overnight in Ga, retrieved Muffy (happy to see us), and are now back home with lots of things to do.  ----------------------------------------------------------------------------------------
September 2, 1999

Entered ALS total for August (see below)..value of 29.  Not too good..but that is for a 45 day period (I began count in mid-July), and not just a single month.  But if the numbers continue at that rate..well, maybe I'll make it to the next century.

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September 9, 1999
Well, I think I finally have my computer running again after a couple of weeks of both hardware and software problems.  I will have to reinstall a lot of stuff, but I seem to have my important stuff going again.  As for my ALS..just seems slowly downhill..still have all functions..but get out of breath very easy..takes me a long time to eat just a little..frequent leg, arm and hand pains.  I also had recliner removed from RV and put next to bed..now I can try to sleep on bed, sit in chair, or use recliner, which seems to work the best.  But still sleep only about 2 hours at a time...but breathe the best in the recliner.  Today Catfish died..quite younger and richer than I..ALS hits quite a range of people.  Anyone know if Agent Orange ever determined as a cause of ALS?

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to be continued....

October 4, 1999

I regret that this will be the final entry for Don's ALS journal. Don passed away peacefully this morning in his sleep. He is survived by his wife - Joyce (with whom he shared a love of travel with), one Son - Edward, two Step-Daughters - Elaine and Dawn, two Step-Sons - Daniel and Felix, four Grandchildren - Joseph, Mathew, Katie, and Greg, one Brother - David, and one Daughter-In-Law, Debi. Memorial services will be held on Saturday, October 9, 1999 at the church attended  together by Don and his wife, Joyce for the last 12 years. The church is named Our Lady of the Rosary Parish in Land O'Lakes, Florida.

ALS, also known as Lou Gerhig's Disease, has no known cure as of today. In the future, we can only hope and pray that a cure can and will be found.

If anyone would like to respond to any part of this web site, please feel free to send an e-mail to PJungles@aol.com. This site will remain active. 

Disease Progression ..by the numbers

Don's ALS Ratings - 40 is perfect...I began this table in July with an initial value of 38.

Only mildly optimistic, I only projected to the year 2000.   I hope I will end up adding other
years to this table.

My numbers for 1999	Jul	Aug	Sep	Oct	Nov	Dec
Speech	4	3
Salivation	4	2
Swallowing	4	4
Handwriting	4	4
Food Handling (no tube)	4	3
Food Handling (with tube)	/	/
Dressing & Hygiene	4	3
Turning in Bed	4	3
Walking	4	3
Climbing Stairs	3	2
Breathing	3	2
Totals:	38	29

The Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS)

a. Speech

b. Salivation

c. Swallowing

d. Handwriting

e. Cutting Food and Handling Utensils (patients without gastrostomy-feeding tube)

Cutting Food and Handling Utensils (alternate scale for patients with gastrostomy-feeding tube)

f. Dressing and Hygiene

g. Turning in Bed and Adjusting Bed Clothes

h. Walking

i. Climbing Stairs

j. Breathing

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