Old 12-02-2004, 07:15 PM #1 (permalink)
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Default LOOKING FOR JANE AND KIM ?

Girls,

Where are you hiding? Have not heard from either of you in a long time. Kim, I sent you a couple of emails and they were bounced back to me. Are you okay? Jane, are you out Christmas shopping? Come in from the mall and check the forum. We miss you! You girls need to let us know your okay. OKAY?

Love to you both,

Carol D.
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Old 12-02-2004, 07:52 PM #2 (permalink)
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Hi Carol, Yes I am still out here. Have almost finished with the Malls for this Christmas!.. I hate shopping!
I sent you a couple of e mails but found out they apparently did not go thru.
Sis is now using walker all the time and w/c for outdoors. Has a dynamite speech device, it works so well. She is quite tired alot of the time. I don't post as often as I should but "things" seem to get in the way. I do read posts often and am always glad to here how everyone is doing. It is always nice to see new names appearing too, keeps the forum alive and thriving.
Has anyone heard from the newlywed (Fisher) lately! Take care all Jane
P.S. Hope to connect with the chat room on Canadians Living with ALS one of these days. Try but always seem to miss everyone.
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Old 12-02-2004, 10:44 PM #3 (permalink)
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Carol, where do you find the time to work, take care of Henry, sleep little, and still have time to post and email. Beyond me..don't forget to take care of yourself in the process.

I was wondering about the girls, and Melissa had doctors booked this week, so I wonder what transpired. And where is Karen gone?

Jane, Fisher posted, Linda I believe did under the subject, "New to ALS" in a reply to Karen. She is new to the group. Try to stay in touch when you can, it must be very hard. Glad to see there is help mechanically to assist with this.

As Carol says stay strong.

I was watching the news when George W Bush arrived, the cost for a day and a half visit was enormous, can't recall the dollar value, between security, food, a state dinner for more then 300 dignitaries, I was blown away. How about funnelling that money into our health care and research instead of having doctors beg for funding. There has to be either a cure, or something which will slow down the progress of this. The overall opinion from what I heard in a meeting in the spring to organize a walk for ALS, is ten years. Unacceptable. Perhaps we should create a letter writing campaign to our MP's to release more funding for ALS, and other life threatening diseases.

Just a thought to all.
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Old 12-06-2004, 12:36 PM #4 (permalink)
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Hi girls! (and guys). It's been hectic here and an emotional roller coaster. I've barely had a chance to read this past week.

Anyway, I visited the nuero-psychologist and we all had a discussion about everything. He is very certain (but leaves room for error) that it is stress related. He seemed unaware of some of the symptoms and after talking suggested a repeat of one of his motor tests and/or another visit to the nuerologist. The hubby doesn't want to talk about it. It is "his problem for him to deal with". He has made that very clear in the past week. My gut tells me he doesn't buy the stress bit and really, neither do I. This is where I climb on my emotional roller coaster. I see things going on with him and there is nothing I can do. I try to tell myself that if it is something that can't be fixed then there would be nothing I could do anyway.

I think the hardest part is actually the emotional distance that seems to be building between us. Like Snowbird mentioned in another posting, He's always been my best friend, the one I leaned on when I was troubled. I'm trying to hang on any way I can. Sometimes I want to be super nice to try and get him to "melt" and other times I feel angry and feel like building the wall even thicker. Then I just really wish I could tell him about it and cry on his shoulder. I pray and cry and look for the light at the end of the tunnel. Whatever is going on here I am so glad for all of you. Having a group of people to "hang out with" is great.

Good luck to all you Christmas shoppers and welcome to all the new people. -Melissa-
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Old 12-06-2004, 10:25 PM #5 (permalink)
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Hi Melissa. I am glad at least the ball is rolling to get some answers. Stress can be a funny thing, but I happen to agree that his symptoms seem more then just stress. Carol, do you have an opinion? If the group rereads all of the symptoms you have described, they may have a better view point if they believe this could be ALS. I know they aren't doctors, just a bunch of people who can't agree on the drink of the day...(that is to be a funny of course)...but they have a ton of experience.
There has to be more, and some fresh eyes and a start from the start line may be in order with the doctors.
Regardless of the eventual outcome, there is tons you can do. You may not be able to fix it, but look at the others on this site and how appreciative they are for family, friends and others. It can go a long way to helping. I have met some of them. Tonight was our support meeting but I was tied up with issues at home and couldn't attend. I really needed to be there. I watched some of the group first hand, and I know the support they receive from their loved ones keeps them going.

I understand the emotional roller coaster and the macho "this is my problem to deal with". Wrong, it is both of yours. Illness/crisis will either bring a couple together, or break them up. You have to keep at him that it is important to your relationship as husband and wife. This may sound far fetched, but perhaps writing him a letter telling him this, or sending him an email laced with your love, concerns and all that is building up inside you. Just keep telling him even if you yell, that you love him for my slogan is if I didn't care, I wouldn't be *****ing. I am not living with my friend, he went from us being fine one day to rarely communicating the next. I have heard little from him except to say he needs some time and space to deal with god only knows what. That was the end of October. And it has driven me crazy. I took the same road that you have tried, nice and kind, to get him to melt. Then the *****y tone. None of them has been successful. He is my best friend also, someone I lean on and when you love someone, you want them to come to you with their issues and problems. When they don't, it is upsetting. Today I was really pissed off and fed up, tired of crying, praying, so I emailed him a goodbye letter, and meant it. Outlined basically how I felt about the shut down between us, the damage it was doing to me and us and thew some of his words to me back at him like a boomerang. Of course, I have the freedom to do that. I wasn't sure if he was even getting my messages. After I did so, a major crisis arouse and the first thing I did was to email to tell him I needed to speak to him, it was urgent. Dumb, considering he has barely spoken to me in weeks. Well, at least he emailed back asking if everything was alright at home. I followed later with the details, and will probably wait forever for a reply. I guess my point is, one I have made to him, no matter what, you want to be there, and locking you out is extremely harmful for any relationship no matter what the circumstances are. In your case, as it is somewhat with mine, it is not the illness or medical matters which take over, it is the relationship matters which are the focal point. You are married to him you have to find a way to get through to him and not shut you out.

Keep us posted, and god bless...

Theresa
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Old 12-06-2004, 11:44 PM #6 (permalink)
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Hi Theresa and Melissa,

Good to hear from you both! Being shut out from the one you love is heartbreaking. As women, we nuture. We need to fix what is broke. We need to be the ones to say that everything will be alright. It is difficult. Not being able to make things better is devastating for us. I feel that way alot. We of course, are way past the critical first stages of this als thing and entering a whole new phase of living. It is hard to watch the one you love suffer so much. There are days that stress gets the best of me, and, I have a major meltdown once in a while. You are allowed. When the beast of als hits, the whole family becomes engulfed in it. You enter a new way of living, and coping. Everyone has different methods. I take each minute as it comes. You can do no more better than that. I used to think and plan in months, weeks, days, now it is just each and every passing second. That is okay too. Overload is always a heartbeat away. As far as Nathans symptoms being stress related, I do not know. However, if you take all the symptoms that you have related to us, I find it very hard to believe that it is just stress. Man, I would have all those symptoms too, plus more ! I really think that there is more going on there. Not to downplay the doctors that you are seeing, but, could they be missing something? Or are they simply not thinking about als at all? Has this been brought us in conversation when you have gone for you appointments Melissa? You are a smart woman, and you will find a way to get to the bottom of this, even if Nathan does not want to. I told you before, I will help you. I will go with you both to London, to see Dr. Strong, or at least help you with getting an appointment or what ever else you need to do. You both need peace of mind. I think, not knowing what the problem is can cause more stress and agony that not knowing. I know that the unkown is scary, but, at least you will have a concrete diagnosis, then get on with it. Henry was very quiet about his illness for a long time at first. We both were. We had to ingest what was happening to us and why. When we both realized that we were dwelling too much on the als and not on us, we changed our thinking. It was not easy. We have both been robbed of growing old together, watching our children get married, seeing our first grandchild being born, and the list goes on. Sooo, we live in the now. We rejoice in the little things. We miss the big things like travelling, dancing, hugging etc. I think that if you love this man enough Theresa, you will have the patience and steadfast love that you will never think was possible for you to ever have. You will be testing yourself over and over. You have not walked away from this man, does he know that? He is maybe not wanting to burden you with his illness, and that is a very macho and manly thing to do, but, he should realize that you are willing to stand by him, and face this als thing together. Your support will be important, whether he wants to continue a relationship with you or not. Do not give up. He will come around. He needs to get his shit together, and that may take a long time. Be waiting for him. Anger is a emotion that is common with als, but that to will disperse with time. Acceptance of anyone we love with an illness is just what we do when we love unconditional. I hope things will work out for you. I know it is not easy when you do not live together, but, keep the faith. At least you heard from him! That is a plus.. Anyway, TBear, I looooove La Senza. I love red. (as you know ha..) And no one here is 50, we are all just big kids. I will not give in to age. It is just a number. Al, have a great time on your trip. You sent me your skydiving pic. Good shot. And yes, you are still sexy .....ha.... Hope this finds you all well, I have to go wrap some presents now or they will never get wrapped. And Al, a trip AND money will be just fine for my Christmas present. Thanks!

Have a good night all. love to the gang...

Stay Strong, Carol xoxo


Les, you have your work cut out for you joining our group, the big boys will try to corupt you, but remember us girls have all the answers !
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Old 12-08-2004, 07:57 AM #7 (permalink)
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Theresa - thanks so much for sharing. It is good to know others are feeling some of the same things I am. I'm so glad you were able to contact him, inspite of telling him you were finished. Also glad he responded. As Carol says, he's probably just got to get it together, just like Nathan. Your right about what you said to keep at him. I will do that.

Carol - I won't forget you when he gets around to seeing more doctors. For now, I can't even get him there kicking and screaming. I wouldn't be able to catch up with his long legs as he ran the other way! For now (today) I am encouraged that I am not the only one who sees this as something possibly more. I know you are not doctors and you don't even see him in person, but that in reading what's going on, you're not telling me I'm crazy. Sometimes I just wonder if thinking wrong. I'll just keep after him with love in whatever mode it comes out!

Well, I'm at work and they are paging me away. Gotta run. Melissa
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Old 12-08-2004, 01:04 PM #8 (permalink)
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Hi to all.
Yes he did write although his message had some cryptic words about short and long term comittments, etc etc. Over the last week I have said everything I can possibly say to him. So if he needs some time and space to deal with what ever else is going on, for now I am going to give it to him. Usually during any problems where he plays this shut down game, I write and write and he doesn't respond. He reads them, or some of them, I think, and since he did reply to me, he must have seen a weeks full of messages. I don't like to do this, but since I have made my view point loud and clear, perhaps if he goes into his 'inbox' and finds it empty from me, it may give him a shake. It has been a year since diagnosis, or close to it. If I sit back, hopefully he will know I am coming to the end of my rope, I was serious about what I have said, including this block out is unacceptable to me any longer.. I will leave it up to him to come to me. Gotta admit the timing really sucks, Christmas. He was either diagnosed in December last year, or they suspected it. He was miserable that entire month, pushing me away, picking absolutely stupid fights, did every thing he could think of to get me angry, went way outside the box and it worked. We spent the entire month in arguements, it drained me and was upsetting. He came around in January, called me and said he was sorry. I think at this point he has to admit to me he misses me as much as I miss him, I know he does, but I need to hear it and he has to see it smack him between the eyes. It could backfire, but I have tried everything else.
Carol you and Henry have been robbed of growing old together. I can understand the fear, anger and all the emotion which goes with it, the strenghth you show is amazing. You have every right to have meltdown days. I try to vision what it is like to watch him, I admit it scares the crap out of me. When you received the news, the world kinda explodes, all the plans together are at risk. That was how I felt, planning a future and building towards for a few years, with the possibility now in front, it may never happen, time will run out.

Melissa, does he not want to feel better? Or is he plain scared.

Well, I am at work also, better do some.

Talk soon....
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Old 12-08-2004, 07:28 PM #9 (permalink)
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Theresa: Is this guy from Pictou Nova Scotia. My brother in law from down there always said break up with a girl before Christmas and you save a lot of money. Get back together after Jan. and just get them some candy for Valentines and you get to eat half of it too. Not to make light of your situation but this guy sounds like you might be better off without him. It doesn't sound like he is ready to commit at all and I know you are looking for that. I know it's hard but cut your losses now before you get in line for more hurt. Like I said before. There's something going on with this guy that just ain't right. Anyway computer is going out to be fixed tomorrow so will say see you all next week. All sunburned, peeling and extremely hung over.
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Old 12-08-2004, 09:26 PM #10 (permalink)
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In response to Al I know what you mean. Last Christmas fiasco was the result of the inevitable results. He wanted to push me away because he felt I deserved more, not to be saddled with someone so ill. I think he has kept this all bottled up for too long, and in some ways I have allowed that. I was wrong. But how do you get someone to talk who doesn't want to? I have known him for a very long time, and I know how he can get, and the reasons behind it. We want to move on, but neither of us can because of the kids at the moment, and his time table is better then mine. If I said to him wrap it up by the spring, he would. I can't. He is an all or nothing person at the best of times, I have tried to show him sometimes what you have and can have is better then nothing at all. I have been debating walking away, but there is tug of war inside me that regardless, I have put four years into this, I don't want to throw it all away. And what ever goes down, I want to be there anyway I can. But I believe the approach I am going to take now, will be the be all or the end all. And if it turns into being the be all, then we make some serious changes.
Any way, as I thought today how much is this issue a relationship one, or an illness one, and decided, the two cannot be seperated.
Have a great trip, and I suppose on behalf of the forum and all your friends, we don't want an email saying you are locked away for bad behaviour. Tbear may get pissed he has to fly incognito and rescue you and Lee.
Lee, keep a close eye on him.

From me, and the gang
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Old 12-08-2004, 10:44 PM #11 (permalink)
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Default Hi everyone

This is Karen and I have sat here reading your posts and realise how wonderful you guys are....I am so new to this and this has made me realise what is still in store with me and Richard.....he so wants us to be together all the time...and it scares the hell out of me to be honest...it is so soothing to know that there are friends like you out there to help through everything....I sure don't get any support from my family and that hurts me deeply....I know we have to live one day at a time...the past is the present and tomorrow is out of our control....anyway...just saying hello again and glad to meet everyone....hang in there everyone and know your all in my prayers....
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Old 12-08-2004, 10:47 PM #12 (permalink)
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Default Hi again everyone

LOL...what I meant to say is the past is the past....and tomorrow is out of our control..that is why I live for today.....LOL that is what I get for doing this while at work...I am a customer service rep for TD Visa...OOPPPS...should be listening to the *****y cardholders instead of reading posts...
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Old 12-09-2004, 12:21 AM #13 (permalink)
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That's ok Karen. Not a problem and by the way can you up my Visa limit to $20,000 just in case I need cigar money or bail money? LOL.
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Old 12-09-2004, 12:24 AM #14 (permalink)
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it is a great group, don't be afraid to speak your mind.
I sent a private reply to you, check it out.
Theresa...
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Old 12-09-2004, 02:14 AM #15 (permalink)
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Hi Al & Lee,
Have a great trip and make sure you put alot of sunscreen on. You wouldn't want to get your arms too badly burnt, you won't be able to hold your glass of wine or those exotic drinks that you will want to drink everyday......Have one or two for all of us left behind in the cold.
HAVE A SAFE TRIP AND KEEP WELL. Elaine :
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