Sandy, we need an update

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Senior member
Nov 27, 2006
Learn about ALS

Did you get in touch with the doc's monday and did you get in touch with the ALS clinic?

take care,

The wheels are in motion.

Hi Jamiet, Thank you for your interest.

I will be seeing my GP on Monday PM. He has been on vacation this past week.

The MND Clinic will only see me with a referal from my GP. After all that I have read on this forum, this really does make sense in my circumstances.

Think about this for a moment. Only one (1) week ago, I was in very dire straights. Now, whether justly or not, my attitude is much improved. My condition could be as basic as a pinched nerve. I'm not hitching my cart to that Dx, but neither am I dismissing this possibility. The point is this, you and your wonderful friends have given me hope for something better.

Over the past few days my emotions have been up and down, but mostly up.
Regretfully, I have managed to get myself hooked into two (2) separate smaller home projects for my daughters. While the projects are frankly inconvenient, the projects are also distracting. Being discreet about something like this comes at a very high price all the way around. Without the appropriate insight, my daughters would have no reason to hesitate about asking me to do these jobs. The problem is my wonderful wife doesn't exactly appreciate the resistance putforth on the ADD-ONS she has so politely requested.

Life is very interesting is it not? Most of us try to live by these moral standards instilled thoughout our childhood and suddenly without the necessary prior training in the fiield of deception, we gradually paint ourselves into this corner of suspicion. Does the cause defray the effect.............probably not. Oh well, I'm here now so I'll just keep making things up as it goes along. I would sure make a pathetic crook.

Moving to the future, here is my thinking on the situation as we sit today.

My dear and loving wife leaves on her Cruise for 10 days in one week from today. Around our home our primary focus is on her Cruise.
My GP is a very typical GP until an alarm bell goes off and then he becomes extremely focused and direct. I trust him. He will align the ducks so to speak in short order and the process of elimination will transpire quickly. I'm very fortunate in that in our small community he packs some serious weight. If there is an obvious alternative Dx to be found, I trust he or his chosen Neurologist will find it in the narrow window of time before my wife returns. While this window will be a very anxious time for me, at least I will not be burden by the fact that I'm driving my wife nuts with my impatience. So, let's suppose they find something obvious. Well, that could be good or bad, but it is unlikely to be lethal. Should they find nothing and throw their hands up in the air, then I will demand an appointment with the closest MND Clinic. There my odds will significantly improve of a Dx. Unfortunately, if they find something it will likely represent a life altering pattern, but at the very least I will then know how to plan my life. I fear they will find nothing of consequence and I will end up in the revolving door of dread.

This next portion of my response goes to everyone reading this message that lives with the unknown.
If I end up going to the MND Clinic, I'm going to be facing a mine field of decisions. I will be the proverbial duck out of water. So, any input that you folks could offer me in negotiating these steps correctly would be deeply appreciated. Annmarie has me keeping all my related records for future reference. There should be lots of questions, but my focus seems to be on only one.

For the moment. if you would be so kind as to just wish me the best over the upcoming seventeen (17) days, that will be perfect. Be assured that I will update you along the way as the events unfolds. However, until something breaks one way or the other, I'll just ask for your support.

I'm desparately pushing my deepest fears to the back of my mind, but I'm not going to lie to you, I am very full of fear by times. I have lived a very blessed life and while I have had to face some challenges, my rewards have seriously out weight those challenges. My fear is that it could be time to pay the piper as my sweet Mother often says.

Wish me luck as I run this gauntlet and may each and every single one of you have a truly wonderful weekend.
Well i have to say, you "are on the ball,it's rolling now"..

Whoaaa, i feel for you've got 3 grown women to please....shewwww. Just make sure you got the pocket book full when you And yex, be cognizent (sp.) of the fact, you will now have to do the one for your wife with no groaning and moning becasue you will go to the doctor and a pinched nerve will be the wonderful blessing you were awarded for meeting us.

Like you, i am horrible at lying / cheating / hiding...etc... i have a "give it away face... Don't worry, now you know that you have the strength to help preserve and value the relationship of all around you, by not involving them, when at a time, there will be little answers and only anxiety to fill questions of your loved ones.

I can sadly say, the possibility of the revolving door / unknown land is about 95% for you. You may have an indication, but you certainly don't have enough for ALS diagnosed.

Sounds as if you have a good GP, if so, he will know the severity of the issue. I would personally stay away from local neuros, go straight to the MDA clinic, they are the experts.

I'll get you a topic list that pertains items that i think would benefit you, with some type of matrix / flow chart, so you can cover questions for all possibilites. it is great to have all your questions written down, because you will certainly forget 1/2 of them if you didn't write them down.

I'll get some deatils on that tomorrow to you.

Take care buddy, hang in there. Give the wife an extra kiss this week and go take her to do something really special this week. Do something you haven't done in a long time. Maybe the top steakhouse in the area, or a movie, or just a night out for what she likes.

I will PM you my cell phone number, you can call me at any time if you need help or have questions.

I was horrible in english at school.....i like you man! you are good, good. A few more responses with you and i'll be albe to elimiate the little "green" grammar checks off of my screen in good, you bring light into my day when i read your post, they are like a book. Have you written a book before?


Hi Sandy,

One suggestion that my sister helped me do this. She is a cancer survivor (10 years) and very organized. Start a 3 ring binder notebook. Get those plastic cover sheets (heavy duty)used for a portfolio. They also have plastic covers for business cards to be used for each Dr that you see. These are very helpful as you can keep the information all together. I also put in about 5 addresses of family members and friends, taken from my Christmas list. You can put your list of question in there and also a list of symtoms you are having. When the Dr. reports and bills and appointment letters come you can slide the papers in the plastic sheets. I take my notebook to every appointment and always have the information I need. It is also easy to update. I helps add to a sense of control. Our thoughts and prayers are with you. Sincerely, Peg

That is a wonderful idea!

My wallet is overflowing with business cards for my PALS. And I have half a file drawer full of stuff re: ALS.

I'm going to try the notebook idea.

Sandy, you have such a refreshing outlook on your situation. I appreciate that greatly. So many people focus on just themselves at a time like this in their lives, but you obviously are more concerned about your family and others. What a great attitude and outlook on life. You are not alone my friend. We are all praying for the best possible outcome in your situation.

God Bless
Capt AL
Dear Sandy,

Reading your post was a little comforting; to know that I was not alone in my worries. Since my visit to a neurologist last week and being told that I could have ALS; I have been a wreck. Of course the anxiety and lack of sleep are not helping :?: Finding this forum was a tremendous relief; not having to try to conceal my ailment for even a short time is a relief.

My husband has known that something is wrong for some time now – I was able to hide my hand weakness for only so long. I try to stay outwardly positive and unconcerned so as to not worry him too much. I find that if I go into another room and take a few deep breaths, I can come back and maintain the façade of everything being fine a little longer. However, I am running out of ways of hiding the tremors in my hands.

I have managed to keep it from my family so far. I want to wait until I can tell them a diagnosis – and a prognosis. My grandmother had ALS and to bring that specter back into the family without a diagnosis I feel would be cruel. Stubborn pride keeps me going most of the time; I will struggle with opening a jar rather than admit to myself – or anyone else- that I need help. I make a miserable patient…and I hope to stay that way!

Unfortunately, I am not as confident in my primary health care. My insurance company is very strict and stingy. I see my GP this week; the trick will be to convince the insurance company to pay for a complete blood work up, not my GP. I would appreciate any suggestions on how to communicate to my doctor and insurance company effectively. Are there certain key indicators that I need to talk to them about?

Best wishes to you all,
I put together a 3-ring notebook like Peg's for my dad, with the lists of addresses of doctors, physical therapists, etc., notes and tests results from doctor appointments, sections on assistive devices and home care options, support groups, and much more. We had pockets for business cards and prescriptions and a section for bills with extra insurance company claim forms ready to go in a plastic sleeve. In the front, we kept several sheets of paper for writing down questions for the various practitioners. It was really helpful to keep everything organized and know you had it all with you at each appointment. Even after my dad passed on my mom had a place to put all those darn bills that kept pouring in until she could face dealing with them.
Good luck and as Jamiet said go do something really fun!
Dear Ann Marie,

This brings me back nightmares of the punits square in biology class! This site explains it much better than I could:

Basically, if there is a genetic component to ALS, then skipping a generation is possible if the genetic traits are carried by both parents. IMHO there is both a genetic and environmental aspect to most diseases.

Best wishes,
Genetic Info


Was just reading this and thought that I should say that in my family we have a genetic form of ALS but in this case only 10% of carriers of our mutation of SOD1 actually get the disease. Therefore, it quite easily skips up to 10 generations. Our specialist has said that this is quite a common SOD1 mutation and potentially many people who appear to have non-genetic ALS, do in fact have the genetic form.

Hope this helps.

My update

First, thank you to everyone for your continued support and excellent ideas.

Yesterday I visited my GP as planned. His response to my condition more or less fell well within the predictable process. They will be scheduling me for a CT Scan, appointment with a Neurologist, Neck / spinal cord X-rays, tons of blood work and a return for a physical in 14 days.

I took your advice Jamie and wisked my Bride out for a nice dinner and evening on Saturday night. We had fun and actually sorted through some ongoing issues to boot. No, I did not share my condition. I'm staying the course.

I spent the entire weekend (less Saturday Night of course) working for the girls. Finished up with one of their projects and just got a good start with the other one. Jamie, you are wrong about the full pocket book. Years ago, I offer my children money or services but not both. In the early stages they took the money, but gradually learned that materials are much cheaper than Labor. So, while their old man is quite slow in the process, the end product is usually pretty good and the price of the Labor is dirt cheap. :) My children truly appreciate the effort and to no surprise enjoy the time spent together in the projects not unlike when we baked cookies together eons ago.

We like to make these memories together. Someday I could very well look back at these memories and they will act as a mental filler to when we did something very special together. Will I be able to make a healthy memory with my children in two (2) years from now? Perhaps not, so the way I look at it is make memories now and visualize them forever. My understanding is with this condition that the mind usually outlast the body. So, I get to keep all those memories as our treasure chest of life.

My beautiful Bride is nearly bouncing of the walls with her excitement about this cruise. It is really neat to see someone this happy about anything. She is all worried about food for me and the laundry situation. I just laugh at her because I'm very familiar with preparing meals and keeping things caught up even with her around. Somehow in my current state, I hardly find the conquest of the laundry at all challenging. I realize it is just her way of feeling more comfortable about my welfare in her absence. Tell me that isn't pretty cool.

Peg, thank you for the three (3) ring binder idea with all the different variations of plastic protectors. This will certainly help keep me organized and constantly positioned for the unpredictable. I have indeed requested copies of all the information that will be drifting in throughout the process of elimination.

Everyone, your kind words are working. Your togetherness or team like attitude got me to take that all important first big step yesterday. No matter how we slice it now, the wheels are in motion and for better or worse, something is going to happen. Hello to reality and good bye to denial.

I see no immediate glitches on the radar screen and can only trust that the Gods will send something to derail the process. Seems the custom that something must go sideways, if for no other reason than to keep us alert. If I were to speculate it would be in the area of the Neurologist appointment. The rest will hopefully unfold smoothly. Is it not interestingly that I have to hope for an entrapment in my spinal cord or a brain tumour as a consolation prize? I mean, let's be realistic here, given the options what is my best alternative? The variation in my two (2) arms does not make for a simple solution. My GP seem to think that there was a very slight difference in my leg muscles as well, but my guess is we will lock that down in two (2) weeks on my next visit.

I'll keep you all informed as the events unfold and remember this simple message: You all matter to someone and that someone treasures all of you big time. If I had a magic wand, you would all be able to do back flips before breakfast tomorrow........just for the fun of it.

Out for now.

ps: Jamie, your Saints are kiling me in the local NFL Pool. What's up with that?
As a Patriots Fan I do not know if I should respond :)

Thank you for the update. My father had a brain tumor, and had they caught it earlier (he did not go to a doctor until he had symptoms for 8 months) he would still be alive. I hope that you tell your wife after the cruise- my mom and I were kept in the dark for months about my dad's condition because he loved us so, and he did not want us to be in pain, but it was worse to lose him and not have a chance to do the things we could have, had we had the time. Just some food for thought :).

Well, it seems your plan is falling right into place. I'm glad for you. I just hope your wrong about the ALS and they find something else.

On those Saints, i'm sick to my stomach, but i think it's just a rough patch. I'm as loyal as they get.

Take care,

Deuce McCallister

is on my fantasy team, he better get his shit together...
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