Sandy Loam
Member
- Joined
- Sep 7, 2007
- Messages
- 17
- Reason
- PALS
- Country
- US
- State
- Oregen
- City
- Salem
Hello everybody,
Let me open my introduction with how much I admire your ability to comfort each other with constant and genuine reinforcement.
Sadly, I only found you yesterday. Your help would have been appreciate along this scary bewildering and extremely lonely journey. The good news is I have found you now.
A bit of history and please pardon my lengthy offerings., just buckle up.
At this moment I am living with many of the classical symptoms of ALS. While my situation is not new to me nor is the acceptance of the likelyhood of having AlS new, my more recent change of attitude is very new.
My experienced started with the classic difficulty in buttom my shirt sleeve button (only one sleeve not the other..........yet), then came the inability to turn my car keys in the ignition, to specific localized twiching, to atrophy in my forearm, then to my bicep, now the athophy is clearly evident in my hand, right down to the Thumb / finger webbing pattern. The twiching is for the most part constant. My energy level is gently but definately eroding. By times it is almost annoyingly difficult to get my hinny out of bed in the morning. Until a month or so ago my attitude was fine. I am now more considerate towards life than previously, but more recently I have noticed that I'm slowly entering an anger stage. This subject is not mentioned much on this forum, so let this be the end of it (my anger).
I cautiously ask you all to please refrain from scolding me for what I have not done. I have as yet not addressing this issue with my GP. As foolish as this may sound, please accept that I have had my reasons, which include the fact that I have lived a very full life, I have a very beautiful healthy family with the most beautiful Grandchildren imaginable. I have been blessed in so many ways even I by times feel selfish. Today for all intents and purposes, people around me have no clue about my state. The signs are so obvious to me and all my layman's efforts to find another illness more applicable with so many of these symptoms is extremely difficult / impossible. Every classic sign is present, but the truth is I am so healthy looking in absolutely every other imaginable way. Sounds arrogant I suppose, but I'm well within my weight class, active in sports, never ever miss work and face challenges as they come up. I have all of this going for me and such a lousy looking future........I'm just sick inside.
I have long and openly advocatd my lack of fear to death with only one caveat. While I sincerely have no earnest desire to die early, I have always hoped / wished that my passing when it comes be swift. My new reality comes with the obvious irony. God and life can be surprisely un-accommodating by times. By now you will have likely noticed my philisophical view of life, but please do not misinterrupt this attitude as coming without enornous levels of fear and anquish. I never want to be a burden to anybody. My wonderful parents carried me for 18 years. Since then, independence has been my strongiest character trait.
The obvious turning point in my life has passed many months ago. However, the turning point for my loved ones in their relationship with me lays straight ahead.
My beautiful wife has had a 10 day Ocean Cruise planned with a dear friend for sometime. In one month she will be finished this cruise and home. I'm sincerely torn about bring my condition to her attention prior to this wonderful experience. Believe it or not, she simply recognizies my determined weight loss and the obvious differences in the tone of my two arms, but she still has no clue about our destiny. She is a beautiful person that can be a little self-centered by times. So, the fact that I rarely if ever complain about anything leaves her to believe that all is well.
I have just complete a very large (three month long) home project this past summer that required some much energy and by times it was almost too overwhelming. I quickly learned through this project that my bodies ability to regenerate used energy has tapered badly over the past four or five months. I resented my commitment to this project from beginning to end and have probably reminder my wife too many times that I have done this purely as a symbol of my love for her. She has now started with the add-on phase (common to some projects and very common to her historical patterns) and last night she blow up at me when I said "NO! in fact hire a contractor if it is that important. I made it clear that I am not doing another major home project until after the 2010 Winter Olympics. Most of you can appreciate the timeline I have appointed. By the end of the 2010 Winter Olympics my fate will be completely sealed, I suspect. No, I'm not suicidal, just trying despartely to remain objective.
I love my wife and rarely if ever do I say no to her about anything. So, now she is very confused, hurt and simply does not understand my resistance. I'm tired and I'm angry and I'm alone. Yes, you are right I know I have chosen this path of loneliness, but my reasons have been honorable. When I do finally share my news with my family she is going to be devastated at first and sharing or nor sharing this burden with her today seems irresponsible both ways. I simply told her that I'm tired, she remains confused and of course, I'm not being particularly open with her.
So, around a week prior to her departure, I plan to ramp up my attention to this matter by bringing it to my GP's attention. I actually saw him yesterday and he has no clue about my condition either. These Doctors today are so busy and rushed that until you tell them about your issues, they see almost nothing. He will immediate press for an appointment with a Neurologist and life as we all knew it will start to change quickly and permanently. My intentions to rampthe process up will happen quietly.
My plan as of this moment is to share my condition with my wife shortly after her return from her cruise but honestly, regardless of my intentions I'm sick about my deception.
I ask you to please be gentle, but I must ask how messed up is my thinking here?
I accept that I've handled it all wrong and I know that my Dx could be out by a mile, but I sense that these Symptoms are very certain, so what is the use in hurrying anything now?
I leave you sad, disappointed in myself and vulnerable to all.
out
Sandy
Let me open my introduction with how much I admire your ability to comfort each other with constant and genuine reinforcement.
Sadly, I only found you yesterday. Your help would have been appreciate along this scary bewildering and extremely lonely journey. The good news is I have found you now.
A bit of history and please pardon my lengthy offerings., just buckle up.
At this moment I am living with many of the classical symptoms of ALS. While my situation is not new to me nor is the acceptance of the likelyhood of having AlS new, my more recent change of attitude is very new.
My experienced started with the classic difficulty in buttom my shirt sleeve button (only one sleeve not the other..........yet), then came the inability to turn my car keys in the ignition, to specific localized twiching, to atrophy in my forearm, then to my bicep, now the athophy is clearly evident in my hand, right down to the Thumb / finger webbing pattern. The twiching is for the most part constant. My energy level is gently but definately eroding. By times it is almost annoyingly difficult to get my hinny out of bed in the morning. Until a month or so ago my attitude was fine. I am now more considerate towards life than previously, but more recently I have noticed that I'm slowly entering an anger stage. This subject is not mentioned much on this forum, so let this be the end of it (my anger).
I cautiously ask you all to please refrain from scolding me for what I have not done. I have as yet not addressing this issue with my GP. As foolish as this may sound, please accept that I have had my reasons, which include the fact that I have lived a very full life, I have a very beautiful healthy family with the most beautiful Grandchildren imaginable. I have been blessed in so many ways even I by times feel selfish. Today for all intents and purposes, people around me have no clue about my state. The signs are so obvious to me and all my layman's efforts to find another illness more applicable with so many of these symptoms is extremely difficult / impossible. Every classic sign is present, but the truth is I am so healthy looking in absolutely every other imaginable way. Sounds arrogant I suppose, but I'm well within my weight class, active in sports, never ever miss work and face challenges as they come up. I have all of this going for me and such a lousy looking future........I'm just sick inside.
I have long and openly advocatd my lack of fear to death with only one caveat. While I sincerely have no earnest desire to die early, I have always hoped / wished that my passing when it comes be swift. My new reality comes with the obvious irony. God and life can be surprisely un-accommodating by times. By now you will have likely noticed my philisophical view of life, but please do not misinterrupt this attitude as coming without enornous levels of fear and anquish. I never want to be a burden to anybody. My wonderful parents carried me for 18 years. Since then, independence has been my strongiest character trait.
The obvious turning point in my life has passed many months ago. However, the turning point for my loved ones in their relationship with me lays straight ahead.
My beautiful wife has had a 10 day Ocean Cruise planned with a dear friend for sometime. In one month she will be finished this cruise and home. I'm sincerely torn about bring my condition to her attention prior to this wonderful experience. Believe it or not, she simply recognizies my determined weight loss and the obvious differences in the tone of my two arms, but she still has no clue about our destiny. She is a beautiful person that can be a little self-centered by times. So, the fact that I rarely if ever complain about anything leaves her to believe that all is well.
I have just complete a very large (three month long) home project this past summer that required some much energy and by times it was almost too overwhelming. I quickly learned through this project that my bodies ability to regenerate used energy has tapered badly over the past four or five months. I resented my commitment to this project from beginning to end and have probably reminder my wife too many times that I have done this purely as a symbol of my love for her. She has now started with the add-on phase (common to some projects and very common to her historical patterns) and last night she blow up at me when I said "NO! in fact hire a contractor if it is that important. I made it clear that I am not doing another major home project until after the 2010 Winter Olympics. Most of you can appreciate the timeline I have appointed. By the end of the 2010 Winter Olympics my fate will be completely sealed, I suspect. No, I'm not suicidal, just trying despartely to remain objective.
I love my wife and rarely if ever do I say no to her about anything. So, now she is very confused, hurt and simply does not understand my resistance. I'm tired and I'm angry and I'm alone. Yes, you are right I know I have chosen this path of loneliness, but my reasons have been honorable. When I do finally share my news with my family she is going to be devastated at first and sharing or nor sharing this burden with her today seems irresponsible both ways. I simply told her that I'm tired, she remains confused and of course, I'm not being particularly open with her.
So, around a week prior to her departure, I plan to ramp up my attention to this matter by bringing it to my GP's attention. I actually saw him yesterday and he has no clue about my condition either. These Doctors today are so busy and rushed that until you tell them about your issues, they see almost nothing. He will immediate press for an appointment with a Neurologist and life as we all knew it will start to change quickly and permanently. My intentions to rampthe process up will happen quietly.
My plan as of this moment is to share my condition with my wife shortly after her return from her cruise but honestly, regardless of my intentions I'm sick about my deception.
I ask you to please be gentle, but I must ask how messed up is my thinking here?
I accept that I've handled it all wrong and I know that my Dx could be out by a mile, but I sense that these Symptoms are very certain, so what is the use in hurrying anything now?
I leave you sad, disappointed in myself and vulnerable to all.
out
Sandy