My Diary

my condition as of 05/15/

2011-05-17T13:30:00.150-04:00

as I go longer into ALS things seem to Go into reflection of what we take for granite simple things and sad moods all stuff that you wanted to or wished you said before I lost my voice. can't talk can't move even to turn my head almost impossible . oh I wished I could hold my wifes hand and assure her everything will be ok. a wish to be a father once more..to hug them, always in a rush to give them one more bit of advice . imprisoned alive in a dead body either i will be healed or my days are numbered

my condition as of 3/20/2011

2011-03-27T13:47:00.000-04:00

today is the same as yesterday I will update 3/27/2011

my conditions as of 01/17/11

2011-01-17T16:56:00.001-05:00

i t' s been awhile since I logged in, .I have been in and out of the hospital, namoania is becoming more common. Things seem to be moving in a way that is most dreadful. Time is valuable on a day by day frame. But through it all my faith remaims unshaken. I know in my heart that Jesus I expect to be healed, so I spend my time praying and reflecting on my life and my future. Trusting in God it all work out .(romans 8 ) To accept the fate that lies before you, but standing unmoved in the face of death, Remaining calm and peaceful. I believe each and everyone of us will stand before God in judgement and your life will flash before your eyes. Now at this point we all feel it useless, that is where we condemn ourselves.Untill our last breath there is hope to be saved and to be healed...

.my conditions as of 11/29/10

2010-11-29T11:57:00.000-05:00

it is a beautiful sunny day. I am feeling fine, considering all. i'll be focusing on finishing story of the devil and praying with your heart. I write how I pray every day and I pray for every one I've ever known and that includes you and your family.

my condition as of 11/27/10

2010-11-27T17:32:00.000-05:00

well thank God it was a very nice thanks giving. All went well, me I couldn't eat or drink anything. But my prayer was answered, I was at home with my family and not in the hospital, thank God...

my condition as of 11/22/10

2010-11-23T19:42:00.000-05:00

just when you think you have enough to handle,I end up in the hospital with kidney stones. Anyway you take as it comes, sooner or later it all works out. Even though I can not eat or drink for Thanksgiving I am out of the hospital and home with my family

my condition 11/04/10

2010-11-08T19:47:00.002-05:00

At this point I like to go back in reflection before this all happened. Lord knows I
I had my share of up and downs. Living my life best I can, having made some

my condition as of 11/02/10

2010-11-02T18:08:00.001-04:00

Week after week I know there is still hope I can still be healed, but there still is question is it God's will and or is my death part of a bigger plan

.my conditions as of 10/25/10

2010-10-17T17:10:00.161-04:00

As things are getting very hard, I learn to adapt and take it as it comes. My diaries are shorter and shorter, I entering a period of reflections past, present and the future. All the emotions prayers pleading with God to heal me. Knowing I'm in the final stage of this disease, now I seem to be begging for death without delay....

my condition as of 09/22/2010

2010-10-17T16:42:00.000-04:00

I think its time to end the diary it getting to hard my eyes are getting sore.

my condition as of 09/16/2010

2010-09-18T12:03:00.002-04:00

laying in my bed looking out the window and I see leaves falling, you know what that means. somethings are in place to happen with or without you . Everyday you wake up and be part of society and moan and complain about the day or I 'll finish later I 'm getting tired

my condition as of 09/12/2010

2010-09-12T15:18:00.066-04:00

I'.m laying here at home, seems like groundhog day. Tomorrow will be the same as before. Empty dreams,..no goals to set, Sitting back for hours watching television, can't eat or drink anything. God did give me a blessing I can't smell anything. But it is painful, when my family's sitting at the table eating and I'm in the other room laying in a hospital bed. Totally motionless feeling worthless.

my condition as of 08-26-2010

2010-08-27T13:14:00.298-04:00

seems to be a good day, warm and peaceful . The last couple
of months have been hard. I stare out the window hoping change for the better , I guess that's what they call day dreaming. I am not one to quit or give up hope

my condition as of 08/15/10

2010-08-17T17:03:00.178-04:00

Its been awhile since I last wrote, a lot has happened which blocked all that I had to continue. Up to this point all my typing is done with my eyes. I'm now Parryized from my neck down. From what I see and what I researched, I'm now at the final stage of this desease, in which I have six months or less to live.

ill finish tomorrow i'm tired

my conditions 12/03/09

2009-12-02T17:22:00.002-05:00

At this time, it's been all about staying alive and asking God to show his mercy with me. It's very hard to
keep a positive attitude lately. I've reached a point where I can't walk, talk, lift my arms, eat or drink anything [other than the feeding tube], I now have a caregiver giving me showers, tending to my hygiene. The biggest issue I have is the excessive phlegm. I'm constantly using the suction machine and spitting up. Sometimes the phlegm gets caught in my throat, it literally blocks my airway, and it feel a rope around my neck. The sad thing about this week I having a hard time finding any good coming out of all pain, misery and dying

my conditions 11/23/09

2009-11-24T20:50:00.051-05:00

Thanksgiving; the one time of the year that we give God thanks for all he's given us. It also for many is a time where giving thanks is not that easy. That time many know as a '' sacrifice of praise '', it's so easyj to give thanks when all iis going good, now give thanks when things are not so good. I had a very nice thanks giviing, unfortunely I didn't have the liberty of eating any food. At this point I'm going to end this week short and skip to following. I'm working on finishing up on some articles and stories I've been working on. Right now I'm working on '' the devil, a true story ''...... A must read article

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my conditions 11/05/09

2009-11-06T13:52:00.007-05:00

As of today I feel pretty decent, it's a beautiful day the sun is shining, I had good night sleep, the dog is barking nice and loud.......... lol I wrote that nov 5th to show me there's not always going be bad days. As for current conditions, my hands have lost all ability to squeeze and hold on. I think at this point my main concern is to keep my airways clear, the flem build up gets so bad I'm finding difficult to breath. Thank God the V A hospiital came through with the coughing and the suction machine, they have helped a lot. I sleep every night now wiith an air machine. My attitude is still very positive and hopeful. I still believe very strongly that this nightmare can all turn around and God could heal me or medical technology would prevail. Until then, be smart, stay strong be responcible and plan for outcome whatever it may be.

my conditions 10/30/09

2009-10-30T16:08:00.016-04:00

at this time i'd like to talk about my thoughts and things i learned. first of all, you'll notice no capital letters, but it's me typing, so please excuse me. i'd like to start with these words; pride, patience, shame and digniity. couple of days ago i fell, and the sad thing about it if i had waited the outcome would have been different. then to make matters worst, help was offered and me through a bad thing called pride, i got hurt a painfull lesson. at this time i can no longer shower or go to the bathroom on my own and it has really affected my dignity. shame is word that only comes, when we are drawn or taken out of the bounderies we all keep. my shame and dignity came to meet me, my wife has been doing everything from giving me a shower to wiping my butt, even though she is my wife it was still hard. well i came to grip with my stupidity and my love for my wife became even more stonger. now unfortunately my wife has become over whelmed so a care giver is assigned to help out. this situtation, (although welcomed and very much needed) is very difficult, to have a total stranger giving me showers and most of all assisting in my toletary. so that's pretty much it for now, the next diary update will be in two weeks. thanks to my friend chucky for building a special table now i'm able to type again. [ note;] some new things coming to my website; www.tomorrowisnotmine.com check it out and pass it on...........

my conditions 09/11/09

2009-10-05T12:36:00.005-04:00

Hi everyone. It's been a very tough month of September. I really thought that my sickness was slowing down, but I was wrong. I really tried to type my diary, but my hands would not allow me to. Right now, I can only lift my arms 2-4 inches off the table and my fingers are almost totally frozen up. Right now I have my step-daughter typing for me, because I really tried to, but I couldn't anymore. As for my conditions they are as follows: my breathing is becoming difficult, because the flem is building up a lot in my throat. My ability to speak is also been affected. Just recently pulsating in my legs have increased and my ability to stand and walk are diminishing greatly. The doctors and my therapist have been great in helping and comforting me. I try to stay positive and upbeat, but the pain sometimes has been unbearable. My pain medicine has been increased to a point where I can tolerate it. For a while my weight was an issue so they increased my water intake which now wakes me up every night to go to the bathroom, I never thought I can pee that much. The ramp was put in recently which allowed me to move my wheelchair upstairs. Next week I will be receiving a breathing machine and a coughing machine, hopefully that will make things easier.

my conditions 09/11/09

2009-09-12T16:37:00.005-04:00

i had a great birthday, also i want to.... "go to my condition 10/05/09"

My conditions 08/31/09

2009-08-31T20:23:00.004-04:00

I seem to be holding out, trying to stay focus through this trying time in my life. I'm doing my best not to complain, knowing its always easy to thank god when things are at their best, easy to smile and sing. Now its my time to be tested with all that I believe, to show God I 'm worthy and greatfull even in bad times. Trying to find good in everything that is, smiling when you know deep down you want to cry and scream. I'm keeping my eyes on what I can still do, not on what I can't. Keeping my faith in God, that no matter how turns out, and that it is part of a bigger plan. I keep saying God your will be done not mine, never giving up hope that this can all change, but standing brave in the mist of adversity. My next update will be September 11, my birthday................

my conditions 08/18/09

2009-08-18T17:10:00.007-04:00

As I see different things happening, it reminds me that the hard part has yet to come. My arms and hands are becoming more and more difficult to lift and hold. When I type, I have to keep switching hands it hurts so much. I can barely lift my arms off the table. What it tells me is my arms and hands are shutting down. I can hardly speak at this point, it's starting to get a little scary.
The lesson learned this week is there are two ways of dealing with things: accepting and reality. Accepting is based on surrendering all your emotions, thoughts, and abilities. As an example, as the disease progresses, you begin to fight and think in desperation. When your muscles are weakening, what's left is to do exercises to strengthen your muscles, but to exercise speeds up the progression. So, now it becomes surrendering to the disease to stay alive as long as possible. Now, you start thinking beyond your normal thoughts and comprehension of ways to stop or slow down the inevitable. What's left are prayers, support, and faith that somehow you won't face the same conclusion as many others. Your hope and prayers are based on technology, support from the many people around you, and the hope that God will have mercy on you and heal you.
So, as a final thought, reality is based on what you see, and what you're told. When someone tells you what will happen and how it's going to end, and when you find yourself being the one it's going to happen to, it is a whole different awakening. The only thoughts you're left with are staying alive, preparing legalities, and comforting your loved ones around you.
As it's written, hope for the best, but prepare for the worst.

my conditions 08/06/09

2009-08-09T18:26:00.006-04:00

Hi everyone, I'm still smiling! thank God, he's been giving me the strength to endure all of this, even so, I grateful it's not all bad all of the time. My strategy up to this point is remain calm, don't give up my inner peace. The peace inside, (we all have) that rationalizes every feeling, all the facts and the odds. I found when you be yourself, people either like you or they don't. Holding on to yourself in times of adversity heightens all your sensors, which creates a sense of priority you need, to sort out all negativity, (this desease) in direct. It's been hard to smile all the time, but most of the time it's more to deflect feelings and information coming at you. I've been trying to stay focused on the progression of this desease, because if you don't always do what the doctor said, it creates moments where you can no longer do the things you need to do. As an example; My therapist told me to do range of motion exercises, I failed to see the priority to do them right away, which caused my shoulders to freeze up and now at the slightest wrong move turned into the most excuciating pain. If I only did it sooner the pain would have been delayed. There's an old saying " forgive me, while I put my stupid face on". My therapst said,
"it's quite a fickle you got yourself in" and ladies and gentlemen, that speaks a thousand words. "Toseigh" Erin in occupational at the VA. Now I'm asking all of you and people you might know, Beware, learn to do and not always just listen. I have something to share, my seven year old daughter is now helping. Today at church she grabbed my hand and lead me to my seat and with that I was smiling all the way to my seat(proud and over joyed). As far as anything new; The ability to walk and stand, is becoming more difficult. I've still been falling unexpectingly and most of the time without warning. Since that last fall, my wife will not let me walk to much on my own. My wife has now took over the showering, dressing, feeding, I'm not able to on my own.
My ability to shave and brush my teeth are comng to end, my arms are weaking and not able to reach or raise up anymore. My wife keeps up with my medicine. It's through the feeding tube now, I can't swallow my pills anymore, they get caught in the flem build up. My speech is becoming ever more hard to understand. I'll be updating my website with a new things in the
next few days. To those who been trying me, I'm sorry for not getting back to you, I haven't been on lines for longer periods lately. Well I need to sign off now, I'm getting tired, come back and pass it on, (my web site). If I can help one person with what have shear, it all worth it me.

my conditions 7/23/09

2009-07-23T17:24:00.003-04:00

Since my update, a lot has happened. It begins with a rough two weeks. But, I experience further progression of this disease. My arms will only elevate to about a twenty degree angle. My hands are now at a critical stage. Picking up a newspaper and even turning the page have become a very difficult task. My voice has become very hard to understand and communicate. Ive been working on my communication device in hopes of programming it to its fullest. I will be using an eye attachment very soon as my only way to be able to type, communicate, and express how I feel. Ive had lately been noticing cramps in my legs which signals the beginning of the deterioration of my ability to stand and walk. Just recently, I was involved in a situation with my members in my family that had resulted in a freak accident where I was pushed to the ground and suffered a severe blow to the head, and resulted in six staples and two stitches and a severe headache. And then, in the past couple days I had eaten a piece of broccoli that had gone down sideways and scratched the inside of my throat which affected my ability to swallow and sent me to the hospital overnight. I had received the feeding tube which has begun to be acceptable and dependent upon to eat. I'll be updating in the next couple of days to a week with further conditions and comments, so please come back . Further updates will be typed by someone else to help me. Thanks to everybody for all of their prayers and all the medical professionals assisting me and comforting me.

Yesterday, Today and Tomorrow

2009-07-09T18:44:00.004-04:00

These are words of a wise man and spoken from the heart...

There are two days in every week about which we should not worry, two days which should be kept free from fear and apprehension. One of those days is yesterday with its mistakes and pains. Yesterday has pass forever beyond our control.

All the money in the world cannot bring back yesterday. We cannot undo a single act we performed. We cannot erase a single word we said.

Yesterday is gone.

The other word that we should not worry about it tomorrow with its possible adversities, its burden, its large promise, and poor performance. Tomorrow is also beyond our immediate control.

Tomorrow's sun will rise, either in splendor or behind a mask of clouds--but it will rise. Until it does, we have no stake in tomorrow, for it is yet unborn.

This leaves only one day--today.

Any person can fight the battles of just one day. It is only when you add the burdens of those two awful eternities--yesterday and tomorrow--that we break down.

It is not the experience of today that drives people mad; it is the remorse or bitterness for something which happened yesterday and the dread of what tomorrow may bring.

Therefore, by the grace of God, live one day at a time.

by Dr. Charles W. Edwards, Jr.

my condition as of 7/8/09

2009-07-08T19:41:00.003-04:00

it's been a over two weeks since my last update. I've been very tired lately, trying to stay focus and positive. Just last monday the feeding was attached to my stomach. A lot of pain mostly from the disease, my neck, shoulders and back. I recieved a conmunication devise, thank God, now I need it more than ever. My voice has faded to the lowest, and it hard for me to speak and for others to understand me. I'll be writing more by saturday, please come back, thanks for you're patience............ also, I have something really good to read go to "Yesterday, today and Tomorrow"

my conditions 6/12/09

2009-06-12T11:42:00.004-04:00

Well I'd like to say nothing has changed, but the deterioration is still progressing...
My hands are getting bulk of it, along with my shoulders, arms and the legs.
Before I start, I'd like to say goodbye to one of my doctors, Dr. Mosher, she leaving on her next assigment. I'll miss her and my prayers go with her for blessings, wisdom and protection in her days ahead, her comfort and kindness will never be forgotten....
My hands; when I look down and see muscles being eaten away, it's a reminder of what's to come...
My shoulders; It's sad, I had good form, never really big shoulders, but I had good detail and strong. Now the notice is the pain and the ever tiring efforts to reach and raise up. My youngest daughter grabed my hand to lead me in a walk, it felt like my arm was ripping out of my
shoulder.
My arms; I never had a problem finding my triceps, my fore arms reflected my strength. The detail/form is that of a cripling appearance.
My legs; It's like a tug of war to walk a straight line. Trying to orcastrate speed, balance are becoming a auto pilot where the need for assistance is now more evident.
My motor chair be ready in a week or so, they're measuring for the ramps.
My wife has been a true angel, she helps me dress, helps me eat, She has been very strong, but I'm worrying if she being too over whelmed by not just me.
The doctors are saying the operation for the feeding tube in my stomach is now needed, they're setting it up in a week or so. (I'm not going to like having two belly buttons...)
I've been feeling more weaker each day, I've been wanting to go to the prayer meetings, but can't find the will t0 do so. My speech and my voice are fading, I couldn't recites the responses in church, I had to borrow the man next to me his voice, I was lip syncing. Well that's it for now I'm getting tired, I'll try to update periodically, pleasae be patient and come back.

my conditions 5/27/09

2009-05-21T00:37:00.005-04:00

Hi everyone, it's amazing how weeks go bye so quickly. The last couple of weeks have been tough, but I'm still standing and smiling....have to stay strong, any form of weakness could escalate this disease. It seems to me at this point, the rate of progression appears to have been more steadier. Some symptoms more than others are deteriorating at a horrifying pace. I can't seem to raise my hands/arms to eat...I've gone from 203 lbs to 175 lbs.. I don't mind losing a few, but belly isn't going down, my pants keep falling down, my butt is shrinking..lol I figured another way to eat, seems to work for me; It's hard explain, but it is creative! What's official is I can't button or zip my clothes at all, my wife has been dressing me. I fell a few more times, my dog (beagle/Dotson), pulled me up the stairs, I fell face forward....ooch!! The ALS clinic delivered a loan a motor chair till mine is completed. Facing my seven year old daughter has been hard, but she is doing good (keep her in your prayers). I finally sheds some tears today, though some seems to be laughter? I figure humor and inner peace are keys to slowing the progression. I had a out of the blue thought; has anyone checked to see how many are left and right handed and is that a factor why some go weak waist up, waist down?? All my tools are collecting dust, not able to do much with them..can't pull start lawn mover. I noticed I couldn't tear a piece of paper, package of sugar...having others do things for me OK (I guess), I feel like a baby getting spoon fed. I appreciate all the help and assistance, can't thank everyone enough, my prayers go out to you and your families. I got a new hat couple weeks ago from a dear friend "Maureen", it says "Relax, God's in control"....my faith is strong things could change, I want to see my children's children. Well that seems to sum it up as of now, if I miss anything I'll add it to the next update, I'm getting very tired....Please come back in week or two for updates and thank you all for your prayers, please pass it on....Also please pray the money in, things have been difficult, haven't worked since jan/08, still trying disability. I'm not looking for a hand out just prayers, God provides.............

God said to listen to your Doctor...

2009-05-14T20:08:00.007-04:00

I like many others look to our Doctors to keep us healthy and informed... I am fortunate to be surrounded by the best from the general doctor to the neurologist.... I have something I'd like to share with you from a passage in the Bible called "Sickness and Death" (Sirach 38)
I dedicate this to the Doctors and medical staff who I admire and trust...

Note; (h/s) equals (he or she) - (h/h) equals (his or hers)

Hold the physician in honor, for (h/s) is essential to you,
and God it was who established (h/h) profession.
From God the doctor has (h/h) wisdom,
and the king provides for (h/h) sustenance.
(H/H) knowledge makes the doctor distinguished,
and gives (h/h) access to those in authority.
God makes the earth yield healing herbs
which the prudent man should not neglect;
Was not the water sweetened by a twig
that men might learn his power?
He endows men with the knowledge
to glory in his mighty works,
Through which the doctor eases the pain
and the druggist prepares his medicines;
Thus God's creative work continues without cease
in its efficacy on the surface of the earth.

My son, when you are ill, delay not,
but pray to God, who will heal you;
Flee wickedness; let your hands be just,
cleanse your heart of every sin;
Offer your sweet-smelling oblation and petition,
a rich offering according to your means,
Then give the doctor (h/h) place
lest he leave; for you need (h/h) too.
There are times that give (h/h) an advantage,
and (h/s) too beseeches God
That (h/h) diagnosis may be correct
and (h/h) treatment bring about a cure.
He who is a sinner toward his Maker
will be defiant toward the doctor.

My son, shed tears for one who is dead
with wailing and bitter lament;
As is only proper, prepare the body,
absent not yourself from his burial;
Weeping bitterly, mourning fully,
pay your tribute of sorrow, as he deserves.
One or two days, to prevent gossip;
then compose yourself after your grief,
For grief can bring on an extremity
and heartache destroys one's own health.
Turn not your thoughts to him again;
cease to recall him; think rather of the end.
Recall him not for there is no hope of his return;
it will not help him, but only do you harm.
Remember that his fate will also be yours;
for him it was yesterday, for you today.
With the departed dead, let the memory fade;
rally your courage, once the soul has left.

my conditions 5/12/09

2009-05-12T22:22:00.002-04:00

Hi everyone, it's been a rough couple of weeks. I got caught up in a lot of things, haven't been on computer that much. I said I would write every 1 to 2 weeks, I'll try to stay on track from this point. Well here goes.....from middle of April till now, many things have happened. I got a real scare a week ago, I couldn't raise my hand to my mouth to eat. I learned another way, I raised my hand and my mouth met it half way....Actually it was pretty funny, it also worked well for me. My left hand won't open wide enough to lift a cup/glass, I have to push it on like a wrench.
I've been in extreme pain in my neck and shoulders lately. When I raise my arm up and out to reach, the pain goes center in my neck. I can still do some stretching, walking is becoming limited, although I have good and bad days. Keeping busy with things around the house, trying not to dwell on things to much, I know my strength is progressively failing. I've been feeling very tired lately, it seems to be a gradual weakness. Buttoning, zippering, etc.. you have one real shot to do it before you run out power, then you need help to finish (I think I explained it right?) I've had some emotional times, last week my daughter asked me to push her on the tire swing, I told her I couldn't, I almost cried. While relaxing on the hammock with my daughter she asked me how old I was. I felt that was an unusual question, I told her 49, but then she looked like she was getting ready to cry? I asked her what was wrong, she asked me if I was going to die, she cried out and said daddy I don't want you to die.... I asked why she felt this, she said I seemed to be getting old fast. I told her no one was dying right now and we all die someday, only God knows that. I told her dying was not a bad thing, some die young some old, we get to go to heaven and be angels. Well I was cautious to say too much and concerned about missing an opportunity to ease some future pain and suffering. She seemed to be content with what I said. Then she asked if she would be an angel someday, I said we're all angels in training now. This week I fell three times, two were from squatting down pick up something up, I fell uncontrollably backwards. The other one was going up stairs, six stairs up I lost my footing, fell forward and straight down the stairs. It felt like I was in a three stooges movies the way it happened. I've been escaping to be alone at times, not from anyone, but a need for solitaire. I go into the garage turn the music up or getting some peace and relaxation from laying out on the hammock. Looking up at the trees and the sky, you're able to block everything out. My youngest daughter's go cart is finally finished with the help of my nephew. She was so excited she asked if I wanted to ride with her down the hill. I paused for a couple of minutes, was afraid I wouldn't be able to get up. Well I stepped out in faith and I'll tell you, (What a ride, good old soap box). My daughter's face lit up, she loved it! Well that's it for now, keep my family in your prayers. Pleas come back from time to time for updates. I'm working on some of my secret recipes, very tasty, you'll love them. Starting some new pages "Lets laugh together", "In my opinion", rewriting "what's it like to die", I want to fine tune it, separate it with "Dying with ALS/MND". Some new pixs are coming, family, friends, things of interests, you'll love them. Also don't forget to pop in on "recommended websites", @ tomorrowisnotmine.com lots of new items, issues and views. As a final note; I asked God to bless, protect and heal all who enters my site, so pass it on......

my conditions 4/30/09

2009-04-15T14:20:00.001-04:00

Well this time things are rough, I fell numerous times. One where I went to turn, my other foot locked and I fell on my side on the ground landed on one of tools, I got a nice tattoo from it, very painful. Equal Librium is off, bending and leaning over, turns into a unexpected free fall. I was taking a shower, for the most part I'm sitting down in a shower chair, went to get up and turn, fell out of shower, I got lucky no bruises. My mornings are getting hard..taking longer to eat, barely able to pick up a cup of coffee. Using fork, spoon are becoming barbaric. Getting cramps more often, nerves are pulsating very much now. Talking is getting worst, labored, lower softer voice. Pain in back of neck increasing when moving head certain ways, raising arms, reaching out. My writing is very sloppy, signature is difficult to sign. thank God for medicine, getting good night sleep. Using bed rail more often to lift up. Opening doors, pull on it, hand slips of, closing door with body, no power in arms to shut it. In the car, hard to seat belt, using feet to open car door. Starting feel more in the spot light with people eyeing my walk and dropping things. Funny when people hear me talk, they think I'm drunk, I give them a wink and a smile.
Well that's it for now, check back for updates. PS, I rewrote "What does feel like to die", I went off track, carried off in the wrong direction, check it out now, seems more of what I intended. Also be watching for my new poem coming in a day or two....Hope it touches your heart....

my conditions 04/08/09

2009-04-15T10:29:00.000-04:00

write up in ALS, nick name "The Thief".......

My conditions, 04/14/09

2009-04-14T17:50:00.000-04:00

Today over all has been a good day ALS clinic, sent technician over to hook up voice activation on my computer, I can also use it on the phone. I received a hands free phone, nice and loud..(thanks God) My voice and speech are deteriorating quickly, so it a good thing to have the prgram at this point, not mobile yet, but then again where do I go, can't drive anymore. It's OK, I was getting tired from driving. A few new things arose, one is in my fingers and hands. The right hand my outside finder, pinkie, I can't close it to my hand, which stays spaced out from the rest. The first finger, pointer, is starting to curl downward and freezing position. When I'm eating, I have to bring my mouth to meet my hand. RI hospital physical therapist gave me some stretching exercising to do. The most important thing now is to stay mobile and flexible, because it will waiste away the muscles and perilize your features. My left hand started showing signs of this disease also, spreading my thumb has become limited to its full movement. In regards to my swallowing, I've been choking more often, certain foods had to be eliminated, lettuces, string beans, certain meats. I started the new medicine last week, I don't the name of it, begins with an Rilusole?, I think thats how you spell it... It is the only medicine approved for ALS/MND, it slows the process down, extends life for two months, in my case two months is a lot to share with my wife and children. Still feeling a lot of weakness, labored breath when talking. Half of my basic functions have been affected now.... I absolutely couldn't button or zipper my pants today, going to the bathroom is a killer, you're one step from ripping your pants off to avoid doing #1/2 in your pants... lifting pants feels like a thousand pounds... I think the pull overs are coming to an end, tee shirts are getting stuck on my head..lol I got a massive tooth ache, dentists won't touch it, fear I'll choke on saliva and micro valve needs prior antibiotics. The last thing I need is pneumonia, or an infection, not a good picture to have. Well that's all I have for this week, come back for updates please pray for my family, God have mercy on me.....

My conditions 03/3009

2009-03-31T18:31:00.000-04:00

symptoms of ALS/MND as of 03/30/09

laughing, not as much since increase of steraline (was laughing excessively before)
Yawning, has been excessivwe and more requent, starting to hurt when I yawn and no gradification
Sanitation and hygiene, wiping my bum has become very difficult, assist tool helps to a certain degree. Shampoo hair has become almost impossible. Brushing teeth and grinding has become a pain. Showering is very difficult, (chair stops me from falling in shower). facecloth is heavy, can't dry off properly. Excessive flaking of face skin and head. Can't clip toe nails anymore, tool is working for fingers just fine.
Dressing/social, can't tie my shoes, stretch laces help, hard to get shoes on. Diffucult to put on/off clothes, jackets, hard to button, zipper, hands in/out of pockets, hard to take socks off, taking wallet out of pocket and pulling ID's out.
Speech slured, labored talk, (run out of breath sometimes when talking), talking on phone more difficult (good/bad days)
Fingers, Hands, Arms writing becoming hard, typing, (can't draw anymore). Numbness sometimes in hands and thighs. Nerves/muscles excessively twitching and pulsating.. Can't hold various objects and perform tasks for periods at a time. gripping, holding, cordinating is beginnig to be hard. fingers let go, stopped driving, hand let go of wheel. Eating utentials are helping a bit, can't hold knife or cut. hold arms up to a certain degree, reaching, holding, etc...is difficult. stiring sauce, picking up and holding coffee pot, taking milk out of refrigerator, lifting and holding pans, dishes are much of a task.
Hard to turn keys, door knobs, open boxes, macroni, etc...
Neck, Head, Eyes neck becoming sore, holding head up while sitting back in chair is labored, eyes seeing double looking to the far left/right. sometimes have a spot numbness to the left side of temple.
Legs, losing balance, leaning back to the slightess degree, fall, stoopiong down on balls of feet I fall over very easy. I have hard time getting up, arms won't support me, getting up by knees. I lean over to kiss my wife, I fall on her and she has to push me up. Getting in and out of bed sometimes is hard (just got bed rail)
Eating, Drinking, Swallowing certain foods have been eliminated, smaller portions. Drinking, no drinking out of bottles, sipping out of glasses. Swallowing sometimes involves spitting out liquid, coughing up food..
Excessive flem, getting harder to cough up, sometimes choking on it.
Shortness of breath, climbing stairs (chairlift was put in), weasing comes and goes, talking too much makes me tired.
Muscles, Nerves, twitching and pulsating is excessive. Most I can curl is five pounds ( I used to curl sixty five). When I'm surprised, disrupted, interrupted, dog balks, door bell rings....I jump eractically. Cramps sometimes in my caffs, hamstrings, thighs, inner arms and forearms.

The unknown symptoms

2009-03-31T18:00:00.000-04:00

About a year and half ago, a variety of symptoms were developing, little did I know it was a illness I knew little of. Different things such as difficulty breathing, swallowing, problems with eyes, slurred speech, etc... Each symptom was addressed, but as all, came back normal. Breathing; had a stress test down, heart doctor checked me out. Eyes, tests were done, normal.
Slurred speech, was associated with a hearing impairment I have, also possible side effect of medicine. Eventually I was sent to a neurologist, she review my report. I told her I was having a swallowing problem. My tongue was swollen and she also notice my nerves and muscles were pulsating, (not a lot a that point). Now various tests performed with assumption I could have ALS, Ms, etc..... After MRI, EMG, blood work and spinal tap, it came back ALS. I had again met with the neurologist, all the details were given to me, especially that I had 2-4 years to live! Now one thought was remaining, I had all these symptoms for a year plus, my time frame might be a lot less? Even with all the technology and other patients with this disease, nothing could be defined and everyone is different. So what I'll do now is give you a report of my condition as of March 30, 2009 (go to current conditions) There after will be my weekly log.... Please pray for me, my family and others who have these incurable diseases. And may God have mercy on us!