DH has ALS (Lou Gehrig's disease)
- Thread starter Elfstar
- Start date
wuv tigger
<font color=red>I just want us to all be well<br><
- Joined
- Aug 20, 2003
Hugs to you & Jim!
to you both!
to you both!Yay, we're married! 
And Jim took special care and effort and thanked the minister and guests and told them he was very happy! 
His cold seems somewhat better, last night was kind of rough but I don't think I gave him the full dose of cough medicine he was supposed to have. I re-read the label today and it's double what I thought.
I am very happy, too, and seeing him happy just compounds that for me!
Now we have our trip to look forward to.
Thanks for all your thoughts and prayers for our day today!
And Jim took special care and effort and thanked the minister and guests and told them he was very happy! His cold seems somewhat better, last night was kind of rough but I don't think I gave him the full dose of cough medicine he was supposed to have. I re-read the label today and it's double what I thought. I am very happy, too, and seeing him happy just compounds that for me!
Now we have our trip to look forward to.
Thanks for all your thoughts and prayers for our day today!
dis8297, thank you! We do love each other a great deal!
The irony of all this is, a very long time ago, Jim asked me how I knew I loved him. One of the things I said was that I knew I could take care of him if he became totally helpless, never having any thought in the world that this would ever happen. Well, it has, and while I get really down once in a while about our fate and all the plans we made that we'll miss, I've never had a second thought about all this, never once wanted out, and he has never said I should walk away, no matter how down he is. We do get a little feisty at each other once in a while, he because I try to push him to do what he should but doesn't want to, and me because he's a great order giver - while I'm taking care of one thing, he's spouting off two or three others as if he thinks I've got two heads and eight hands! But then we always get to laughing
at ourselves, and it's all better!
Our day was nice,
the weather couldn't have been better - we almost went outside for the ceremony but the breeze was rather stiff so we decided to stay in. I realized this morning that we had the ceremony sort of backwards - the minister was facing us but all six guests were standing behind him so they saw us instead of him. That actually makes more sense (although we did it accidentally) because we could be heard and seen. Jim's best friend/best man did all his responses for him except for the "I will" which Jim managed himself. And he had his hand on the best man's to put the ring on my finger. Jim didn't want a ring because he can't wear one. He had a good day as far as his symptoms acting up goes 
, and after about two hours everyone left so he didn't get too tired. But the excitement must have done us in because I slept till 10:30 today, and he slept till 1:00.
The irony of all this is, a very long time ago, Jim asked me how I knew I loved him. One of the things I said was that I knew I could take care of him if he became totally helpless, never having any thought in the world that this would ever happen. Well, it has, and while I get really down once in a while about our fate and all the plans we made that we'll miss, I've never had a second thought about all this, never once wanted out, and he has never said I should walk away, no matter how down he is. We do get a little feisty at each other once in a while, he because I try to push him to do what he should but doesn't want to, and me because he's a great order giver - while I'm taking care of one thing, he's spouting off two or three others as if he thinks I've got two heads and eight hands! But then we always get to laughing
at ourselves, and it's all better!Our day was nice,
the weather couldn't have been better - we almost went outside for the ceremony but the breeze was rather stiff so we decided to stay in. I realized this morning that we had the ceremony sort of backwards - the minister was facing us but all six guests were standing behind him so they saw us instead of him. That actually makes more sense (although we did it accidentally) because we could be heard and seen. Jim's best friend/best man did all his responses for him except for the "I will" which Jim managed himself. And he had his hand on the best man's to put the ring on my finger. Jim didn't want a ring because he can't wear one. He had a good day as far as his symptoms acting up goes , and after about two hours everyone left so he didn't get too tired. But the excitement must have done us in because I slept till 10:30 today, and he slept till 1:00.I found this thread today in my efforts to find support. My cousin was diagnosed a few months ago. She is 51, and in the last year has gone from a few unexplained tripping incidents to a wheelchair and slurred speech. Her parents are taking care of her, and they are in their 80's. I just visited them and it's the saddest sweetest thing I've ever seen, the way they care for her with gentle love and good humor, and no one ever compalins. I admire them all more than I can ever say.
DH, in an effort to do something constructive, signed us and our kids up for a Walk to Fight ALS next Saturday in Springfield. It's such an unfair disease and we all feel so helpless, and this is one thing we can do. Elfstar, I'll add you and your DH to my thoughts and prayers as I walk, along with all other posters here who have suffered at the hands of this horrible disease.
DH, in an effort to do something constructive, signed us and our kids up for a Walk to Fight ALS next Saturday in Springfield. It's such an unfair disease and we all feel so helpless, and this is one thing we can do. Elfstar, I'll add you and your DH to my thoughts and prayers as I walk, along with all other posters here who have suffered at the hands of this horrible disease.
Thanks, elizke, and thank your family for doing this. I'll be walking myself at the next one near us. I'm sorry your cousin is going through this, too. This is the most cruel disease I've ever run into. But we'll do our best as long as we can, and we're adding your cousin to our prayer list, too.
MinnyGranny62
<font color=teal>If I did the beach would be rolli
- Joined
- Jun 20, 2005
Congratulations to the happy couple and will be thinking and keeping you both in my prayers. ShirleyWell, it's been a week (and a day) and we're still happily married (and they said it wouldn't last - 
).
Jim's speech has really gone south the past couple of weeks and he was trying like mad to get me to understand something yesterday - after about 10 minutes of "charades" and rewording, I figured out he was trying to tell me Happy One Week Anniversary! He even had the time right, too! Oh my gosh, how sweet! He was never an inconsiderate man but he is so much more conscious of "the little things" now.
He's no longer able to hold the suction tube unassisted and is having some trouble guiding his chair. He's starting to sleep more during the day
and is asking for his anti-anxiety medication more often. I am so glad that our trip is only 10 days away - I want him to be able to enjoy it as much as he can.
I am nowhere near ready to lose him.....
).Jim's speech has really gone south the past couple of weeks and he was trying like mad to get me to understand something yesterday - after about 10 minutes of "charades" and rewording, I figured out he was trying to tell me Happy One Week Anniversary! He even had the time right, too! Oh my gosh, how sweet!
He was never an inconsiderate man but he is so much more conscious of "the little things" now.He's no longer able to hold the suction tube unassisted and is having some trouble guiding his chair. He's starting to sleep more during the day
and is asking for his anti-anxiety medication more often. I am so glad that our trip is only 10 days away - I want him to be able to enjoy it as much as he can.I am nowhere near ready to lose him.....
shancan911
Professional vacationer wannabe
- Joined
- Mar 28, 2007
Elfstar, if you check the boards before you leave, here's wishing you and Jim a wonderful Disneymoon at AKL. Make the most out of this adventure, and take lots of photos. These will be memories you will cherish forever.
Well, we're back from our trip, which went well. AKL is spectacular - it was so cool to look out the window of our room and see a giraffe stroll by. Jim was so happy to be there, we were both so relaxed it was wonderful. The bed was the most comfortable I've ever slept in, and I wish Jim wasn't confined to his chair so he could have been as comfortable as I was. I managed all his care just fine, we went to three of the four parks (didn't have time for Animal Kingdom) and did a lot of "remember when we...". We laughed a lot, cried a little, just sat and held hands sometimes. Once I got all set to feed him, and eat my lunch at the same time, and he moved his chair to a different position, across from me. When I asked him what he was doing, he said he just wanted to sit where he could look at me. We even bought the bride and groom ears!
I have all my instructions now as for what to do once he's gone, too. That's where they crying part came in.
I wish our trip could have been longer but the time we had did tire him out. But we had a wonderful time (except he was always the photographer, and I couldn't figure out how to make the camera work) and I'm encouraging him to tell me where else he'd like to go, just for a weekend away alone together. And I told him if there's any way I can get more time off, and he wants to go to Disney again, just let me know. It did us both a world of good!
We even bought the bride and groom ears!I have all my instructions now as for what to do once he's gone, too. That's where they crying part came in.
I wish our trip could have been longer but the time we had did tire him out. But we had a wonderful time (except he was always the photographer, and I couldn't figure out how to make the camera work) and I'm encouraging him to tell me where else he'd like to go, just for a weekend away alone together. And I told him if there's any way I can get more time off, and he wants to go to Disney again, just let me know. It did us both a world of good!
I am so GLAD you had a great trip! I was praying that you would!!!!!
It sounds like you had a difficult discussion but at least now that discussion is over and you can continue to make more memories as time allows. I have had to have those discussions so I know how hard they are to have.
Did you get any photo pass pictures? I hope so! You will always have the pictures that are in your heart.
Keep us posted on when that next trip might be.......
It sounds like you had a difficult discussion but at least now that discussion is over and you can continue to make more memories as time allows. I have had to have those discussions so I know how hard they are to have.
Did you get any photo pass pictures? I hope so! You will always have the pictures that are in your heart.
Keep us posted on when that next trip might be.......
Elfstar,
I just found this thread today and read through the entire thing. I just wanted to let you know how sorry I am. I also hate this damn disease. I lost my dad to it 5 years ago while I was pregnant with my second child. He never did get to meet her. He would touch my stomach and start crying.
You have such a warm, caring spirit - it comes through in your writing. Congratulations on your wedding and am very glad your trip went well. You are in my thoughts and prayers. Continued strength to you as his caregiver and his DW.
Mary
I just found this thread today and read through the entire thing. I just wanted to let you know how sorry I am. I also hate this damn disease. I lost my dad to it 5 years ago while I was pregnant with my second child. He never did get to meet her. He would touch my stomach and start crying.
You have such a warm, caring spirit - it comes through in your writing. Congratulations on your wedding and am very glad your trip went well. You are in my thoughts and prayers. Continued strength to you as his caregiver and his DW.
Mary
Hi, all, I'm glad you read about the trip. No matter what happens now, I'll always have those memories. And we celebrate our anniversary every week so we get as many in as we can in whatever time we have left! That was Jim's idea!!
I'm away again, at a conference for work at Myrtle Beach, at a resort where the rooms all have ocean views, and it's so serene, when I called Jim tonight I asked him to think about us coming here for a weekend, or even just overnight, just to watch and hear the ocean. With off season rates, we can do more than we could during the summer, so I'll take him any place he's willing to go!
Maryisme, I'm so sorry about your dad having had this too, and it's sad that he didn't get to meet his second grandchild. Thanks for the kind words, everyone; I'm here for all of you, too - my shoulders are broad enough for all of us! I love Jim deeply but I treat everyone as I would want to be treated (except people who stress me out; I pretend they don't exist).
I'm learning that life's easier when you share the pain (to those who are willing) as well as the laughter. One of the conference speakers today spoke on coping with stress (he also did magic as part of his program - we learned how to take off peoples' watches
without them realizing it). He prescribes three things for coping; exercise, laughter (thus the magic tricks and jokes he told), and letting things (that stress us) go. Bend like a palm tree, don't break like an inflexible trunk (can't remember what trees break easily). It makes so much sense!
memories. And we celebrate our anniversary every week so we get as many in as we can in whatever time we have left! That was Jim's idea!! I'm away again, at a conference for work at Myrtle Beach, at a resort where the rooms all have ocean views, and it's so serene, when I called Jim tonight I asked him to think about us coming here for a weekend, or even just overnight, just to watch and hear the ocean. With off season rates, we can do more than we could during the summer, so I'll take him any place he's willing to go!
Maryisme, I'm so sorry about your dad having had this too, and it's sad that he didn't get to meet his second grandchild. Thanks for the kind words, everyone; I'm here for all of you, too - my shoulders are broad enough for all of us! I love Jim deeply but I treat everyone as I would want to be treated (except people who stress me out; I pretend they don't exist).
I'm learning that life's easier when you share the pain (to those who are willing) as well as the laughter. One of the conference speakers today spoke on coping with stress (he also did magic as part of his program - we learned how to take off peoples' watches
without them realizing it). He prescribes three things for coping; exercise, laughter (thus the magic tricks and jokes he told), and letting things (that stress us) go. Bend like a palm tree, don't break like an inflexible trunk (can't remember what trees break easily). It makes so much sense!MinnyGranny62
<font color=teal>If I did the beach would be rolli
- Joined
- Jun 20, 2005
Hello and glad that you are home safe. DH and I were in WDW from Nov 2nd-8th and was wishing that we could have met with you and Jim. Didn't know the exact dates the newely weds were there. Will keep you both in my prayers. Shirley
cyndylou
Mouseketeer
- Joined
- Jan 18, 2005
Elfstar and Catsrule, my heart goes out to you and your families. My DH first noticed cramping and weakening of his thumb 3 yrs ago. Carpal tunnel surgery did not fix it, and eventually he was diagnosed with ALS. However, since he does not yet have upper motor neuron involvement, it is not a definite diagnosis. He went through some tough treatments and tests to rule out everything else. He now has muscle atrophy, extreme weakness, and constant twitching in both arms. He does to the ALS clinic "just so the symptoms can be monitored." I know we're blessed that the disease has not progressed faster, but I still occasionally panic about the future.
Cyndylou, I'll pray for you and your husband. Be grateful his symptoms are progressing slowly; hopefully they will continue that way. Whatever else you do as things progress, take care of yourself, too - constant caregiving can wear you out if you don't.
Jim went from reasonably okay to totally disabled in about six months. My heart is breaking because he's miserable, trapped in a useless body. I'm unhappy because he's miserable; but when he passes, although I'll be glad his suffering is over, I'll be miserable because he'll be gone. What a cruel, cruel disease. I'm trying to keep life as normal as possible for him as long as possible even though sometimes I almost agree with him when he asks me why I'm bothering. It's getting harder to make him smile and laugh. I'm beside myself with trying to keep up with this, with my elderly father who needs my help, too, my more than full time job, and our home and several pets. There aren't enough hours in my day, and if there were, I'm not sure I'd have the energy to keep going through them. The holidays feel like just another burden right now.
Guess I've been to busy to vent for a while - i just read what I wrote above, and that's not really me -
it's just frustration over having to cope with something totally beyond our control.
Jim went from reasonably okay to totally disabled in about six months. My heart is breaking because he's miserable, trapped in a useless body. I'm unhappy because he's miserable; but when he passes, although I'll be glad his suffering is over, I'll be miserable because he'll be gone. What a cruel, cruel disease. I'm trying to keep life as normal as possible for him as long as possible even though sometimes I almost agree with him when he asks me why I'm bothering. It's getting harder to make him smile and laugh. I'm beside myself with trying to keep up with this, with my elderly father who needs my help, too, my more than full time job, and our home and several pets. There aren't enough hours in my day, and if there were, I'm not sure I'd have the energy to keep going through them. The holidays feel like just another burden right now.
Guess I've been to busy to vent for a while - i just read what I wrote above, and that's not really me -
it's just frustration over having to cope with something totally beyond our control.
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