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Sandy Loam

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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
 

DavidGL

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"but I must ask how messed up is my thinking here? "

IMHO, incredibly so.

Fercryinoutloud--go see a doctor for a diagnosis! Not to do so is just inane.

Good luck...
 

CindyM

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Hi Sandy- what's the worst that can happen if you go to a doctor? They could confirm your fears, but you are already consigned to that possibility. They could tell you it is something else, something treatable. Or they could tell you they don't know, and you have to wait and see. SO go, already, and see which possibility it is!:-D Cindy
 

Peg B

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Hi Sandy,

My two cents worth is stop beating yourself up. I lived with symtoms for four years before my first DX of ALS. Since then it might be something else and I am getting treatment. I understand you not wanting to tell because if it is ALS your wife cannot change it and the knowledge spoils things until adjustments are made. But as others have said you don't know for sure. It seems it might help you both if you come clean with your concerns and end what confusion there is over your behavior. HOWEVER, advise her sincerely to carry on and go on the trip and have a great time and that you will keep her informed and even take her with you to appointmemts if that works for her. My husband goes to all my Dr. appointments since the initial DX. Remember it takes a lot of grace to accept and let others truely care for us. God Bless you both. Peg
 

Midnight

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Don't wait for your wife to get home. Tests and referrals take so much time...just get the process started and do stop beating yourself up. Your intentions are good, but who knows, you may be lucky enough to get a dose of some IV antiobotics or weekly shots and be old and gray with this lady you care so much about, so don't keep putting it off. It makes tension and communications issues and it will put all those misunderstandings at rest and make you not so alone. Turn the table for one minute and imagine that she were you...you would want her to tell you...and to go to the doctor...so read this and click the X, and pick up the phone. Take care.
 

brooksea

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Sandy,

If you can, skip the GP and go straight to an ALS specialist NOW! I understand you not wanting to upset your wife and that is very admirable. But this should not keep you from finding out as soon as possible about your condition. The sooner you find out, the sooner you can prepare. And while she is away you may be able to take care of some things, if indeed you do have ALS.

Like everyone else has said, it could be something other than ALS. I hope you can find the answer soon.
 

Jamiet

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Sandy,

I read your post last night and "slept" on it. To tell you the truth, you have "BIG" shoulders to fancy something like this by yourself. I admire your courage 10 fold! hat's off to you buddy and don't beat yourself up over it. what you did, is everything you could, to afford your wife as much peace as you can becasue you know, you are fixing to rock her world. Even though you have spouts with her, we can tell your love together is unconditional and when you tell her, it's going to flip your lives upside down, that will be a given, there is no if's and's or butt's about it!

Do what jimercat says, call the ALS clinic monday skip the GP although, if the GP sees it, he may be able to get you in quicker, it will take you a little while to get in. Tell them exactly what's up and whats been going on, they will get you in quicker, trust me. DON'T GO TO A LOCAL NEURO, DON'T LET YOUR GP SEND YOU TO A LOCAL NEURO, GO STRAIGHT TO THE ALS CLINIC !.

On telling your wife before the cruise. That's your decision buddy, but if you want my opinion, let her go enjoy it. If you tell her now, you will for sure ruin it, she will do nothing but think about it and when you do tell her, you need to tell her exactly why you been hiding it....because from the moment you tell her, it will all change. If she's smart she will know you did it for her, she will realize it soon enough.

Don't wait much longer to tell her though, you will need more support from everyone than you ever have, so the sooner the better.

Don't beat yourself up, your already suffering enough and ALS will beat you up enough for the both of you!

Take care,

rgds,

jamie
 

Jamiet

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On another note, maybe you should go on the cruise with her, time is precious!
 

ltr

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Sandy - you write beautifully! As everyone on the forum knows, and some don't agree with, I am huge about advocating for yourself. You shouldn't be so set on having als until you are checked for everything else. With that said, you may be missing out on treatment that could stop the process going on with your body.

Cindy - I was quite surprised with your advise to Sandy....your one that usually says why find out?! Have you changed your mind? I really hope so, that way you can get treatment for whatever you have going on too!

Like Jamie says, it's better to die fighting!
 

Sandy Loam

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Okay, thank you to each and all for your input. I'm really pleased with how you folks rally and immediately circle the wagons. Suddenly, I'm no longer alone.

David, yes I agree this situation is grinding my sanity down rashly, so my best guess is your are correct.......I'm insane.

I truly appreciate all of your views and the idea of sleeping on something prior to responding adds a dimension of deeper consideration to your response.

Now, to the reality and a real plan..............here is where you have lead me.

As you all are probably aware, I'm crapping my pants over this matter and not knowing has to change and immediately sounds about right. You are all united on that point.

So, monday AM I will check to see if the ALS Clinic will see me without going through my GP. My best guess is that that will not be likely, but who knows. If the path to awaking is through my GP, I will see him just before my Wife departs.

I need to be very strong right now and while sharing my situation with her makes an enormous amount of sense, I simply can not do it right now. Certainly not just before her Cruise. I have (so to speak) made my bed and for better or worse I'm going to sleep in it. She does not get many great holidays and she is going to need some rest before I drop this bomb.

I have committed to refraining from any bad responses or any additional bad attitude about her desire to see more work done. I can do the work and I will do the work. Shot, for all I know it might be the work that she wants completed that is keeping the shred of sanity that I have remaining.

Let's not kid ourselves if my condition is ALS, I'm going to need a ton of help from her down the road. So, banking a few extra credits now while I can, may pay big dividends come crunch time.

I simply don't know much about tomorrow and that fact is, I find this part most unsettling. The truth is without a solid plan, which is typically the only way I operate, it means making up most of my moves as I go along. The beautiful part of denial is everyday I just do the same thing over and over.

However, now once I leave this path, I sense I'll be lost forever.............LITERALLY.

Wish me luck and I'll report back soon.
Sandy

ps: I'm really truly honest to goodness not sure that I wish to know one way or the other. The fact is, the people I have surrounded myself with here on the planet will want to know sooner rather than later. I like denial, I like it a lot but unfortunately denial is usually a selfish act of kindness fraught with peril. out for now
 

brooksea

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Sandy,

I have a feeling you will be able to handle things better when you have the definitive diagnosis. Then you will be able to plan your future as best you can. You sound like you may be a perfectionist and one that needs to be in control. (not a bad thing, I should know)

You are a very caring and loving individual to allow your wife this vacation before you approach her about your condition. Do as well as you can for her before she leaves without really knocking yourself out. And keeping busy will help you keep your mind off the unknown.

Please let us know about your appointment and how you are doing.
 

CindyM

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Sandy-another thought: when my local docs first said "ALS" I actually had to go look it up. Upon learning the defination, I came here and informed everybody what was going on. My sisters took it kind of hard. My boss and friend was devastated. And then the ALS clinic said, "definately neuromuscular but not sure yet it is ALS." So, if I do get worse, like my Doc said to prepare for, everybody will have to go through all those emotions again. Maybe you have the right idea.

Leslie- I'm not against finding out what it is. I guess I just believe them when they say they can't tell me right now. And you are absolutely right that I am in NO HURRY to get a DX of ALS.
:-D LOL I guess that rather goes without saying, though. :-D Cindy
 

liz

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Sandy -

Moving ahead with another strenuous home improvement project at this time may not be such a good idea. If you do have an MND, it could aggravate symptoms and if you're really unlucky may lead to an accident/injury. Once you've told your wife what is going on she should be better able to understand your reluctance to take on more such projects. And I bet you've already banked plenty of good will credits to cover what may be coming. Good luck.

Liz
 

MtPockets

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Sandy, I respect your decision to not tell your wife until after her vacation, but consider carefully what you will say when she gets back.

You have no DX of ALS, just some suspicious symptoms. Maybe while she is gone you can get scheduled for an appointment for tests with a Neurologist, preferably one who is an ALS specialist, and get a better idea of what is going on with your body.

There is no need to drop a bomb on her when you do not know what the definitive diagnose is going to be. There are many other things that this could be besides ALS. We see many people here on the forum, who jump to the worst possible diagnosed, ALS, before any of the tests are run.

I have always been a work-a-holic, and when I got these symptoms, one of the hardest adjustments I had to make was to limit my physical activities. This can aggravate your disease process, if truly you have ALS. My advice, which you are free to ignore, is not to take on any major jobs such as a remodel or add on until you have a diagnosed.

I was told by my physical therapist not to do any exercise as this would cause an increase in muscle loss, quicker than the normal progression for this disease.

Bottom line, go to the doctor ASAP, PLEASE!


If for no other reason to rest your mind and prepare your story for your wife.

And no, I do not think you are insane, but a caring and loving husband, who is trying to do what you think is best for your wife.

God Bless
Capt AL
 

Jamiet

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Sandy,

Capt. is right, don't self diagnosed, you need to get an EMG, which the ALS clinic will do one right away. If they are a true ALS clinic, if you go over what you told us, they will get you in soon. Perhaps, write down what you want to tell them. Then, when you go for all dr. visits, write down what you want to tell the doc.

There are several diseases this can be, MMN, Mypoathy, MS, and about 15 others. Go to the MDA's website, there are ALS clinics there and also most of the neuromuscular diseases.

I'm just like you, controlling and perfectionist and i get so nervous when i go to dr., esp. ALS spec, i'm like a dumb spagetti noodle....bouncing around and can't remember nothing.

Please ask all the questions you want, vent all you want, your not in this alone any more.

rgds,

Jamie
 
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