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jacquelyn

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This is going to seem very strange. It has been absolutely mindboggling for my family and I.

My father has been diagnosed with ALS for almost 16 months now. He has been on bipap for a year. He can only take it off for very small intervals. He spends most of his time in bed but do manage to get to his chair for small periods with some help.

Yesterday my father awoke feeling very well. He said he is "getting better". He stood up on his own (although shaky) and even turned off his bipap machine himself without any help. He ate his supper last night without help (he always needed assistance before). He asked my mother and I if we believed in miracles because he was going to beat this disease. He keeps off his bipap machine for 20 - 40 minute intervals. Our GP came to visit today and said that this is something he just can't explain. My Dad has always been somewhat of a "spiritual" man but now says that he wants me to go to church with him next month because by then he will be able to go. My heart wants to believe that he is getting better but my brain tells me that it is impossible.

.......just wondering if anyone had any sort of reason or explanation for this.
Thanks
 

Al

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Hi jacqquelyn. Outside of a miracle I wouldn't have any explanation for this. We sometimes level off in our deterioration but don't get better for no apparent reason. We have had people coming here CLAIMING to get better but they are usually trying to sell some miracle cure or supplement. Seeing as you are not trying that I have no real explanation. Let us know if he continues to improve.
AL.
 

zac111

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hi jacqquelyn,i have to say this is great news and will give people hope that think that there is none.i do believe in miricales so just pray for your father there is a god so there is hope.
 

CindyM

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I know when my local docs first suspected ALS I didn't exactly give up but I also didn't know much about the disease. The more I learned the more plans I made-for how I would handle one thing or the other. These plans wore me out physicaly and mentally and emotionally. This made me weaker. Now I take it one day at a time, and feel better. I have not regained any strength, but I am not losing it as quickly.

Maybe something like this was happening with your Dad? Maye he was wearing himself out with worry and now feels emotionally better so he is not as tired? Just a guess...Cindy.
 

jacquelyn

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Today is the third day that Dad continues to do well. This morning he is sitting up getting a sponge bath WITHOUT his bipap on. He is full of smiles and is laughing and joking around. He actually met the homecare worker at the door (in his wheelchair with help from Mom). I don't mean to be a pessimist about the whole thing but I am afraid what this might mean. Lots of times I have heard of "the calm before the storm" so to speak. But at the same time, it is so so good to see his spirits so high and to see him so positive.
Thank you all for your replies.
 

paula-jane

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I know what you are thinking.. who knows, but, in the meantime.. I'm glad you are all enjoying some memory making fun!
Enjoy your weekend.
 

ltr

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Jacquelyn - is it possible that your dad was severely depressed before and maybe his symptoms were more disabling from that than the als. Maybe he hasn't progressed as far as he and the rest of the family thought, but was completely disabled from depression due to his prognosis. It's just a thought. I am very happy for him and pray that his happiness continues and his als lags way behind! Leslie
 

Jane

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Hi Jacqueline, You may be right that this is the calm before the storm, I have seen it happen before.
I pray that it is truly an improvement (long term one) in your Dad's condition. However enjoy every second of these days, I use to call them window days, a true gift from God.
Jane
 

JACKIEMAX

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calm before the storm

hi jacqueline,

i truly hope this is a miracle, but to be realistic about it, it could very possibly be the 'calm before the storm'. i tend to agree that his depression was his worst enemy, and maybe his antidepressant meds are just now kicking in. none of us know.

my husband is one of the kindest, gentlest, and sweetest man i've ever known, but i had had to ask his als specialist a few wks ago to please put him on an antidepressant asap bec. his depression was causing him to be sooooo cranky and hateful at times. not at me, but at everything around him.

i believe that everyone in this forum, in every thread, would be so thrilled if this turned out to be a miracle, but it could also have other explanations. please keep us posted, and as others have posted, enjoy this new outlook.

we had to go and buy a 42 in. plasma tv this morn. to have mounted on our bedroom wall bec. horace now needs to use his bipap much more than just at night or 'nap time'.

we have both 'begged' his adult children to come on out from CA and visit, but they have not made it yet, and i think they think my e-mails telling them how bad he's feeling is from a hysterical wife and they just 'don't get it.' does anyone else have this type problem with people not understanding what is actually happening?

jackiemax
 

Al

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Jackie it happens in the best of families. My family didn't really "Get it" until I started using a walker. They knew I wouldn't use that unless something was really wrong. That took about 3 1/2 years.
AL.
 

paula-jane

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People handle stress differently. I am as I have always been with my Mum (who has ALS) I am involved and close and a primary caregiver. My brother who sees her regularly.. is in complete denial and totally withdrawn. Sometimes a physical distance offers a buffer for us emotionally.. There is some protection or numbness offered in a long distance relationship. His children probably mean well.. but it is probably tough to visualize the changes you describe to them and to relate those changes as happening to their father. I hope that they make that visit.. no one wants to live with regret and this disease waits for nobody. I know that my Mum does not have much longer.. and I cherish every moment with her. Whatever happens.. I wish you all the best.
 

BWk

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miracles

jacquelin, For 14 months I've pretty much have stayed the same. Nothing has come back, though and maybe it's just a plateau, but I still can walk half mile, drive and breathing is almost normal. I feel a little better than 14 months ago[mainly mentally, though]. I just wanted to share this with everyone we need hope on this site. Maybe I'm just going slower than I figured at first, but I'll take it any day of the week. And if I stay the same for a long period of time that will be good also. I haven't heard of any miracles with als persons, but maybe it's about time. Let us know if he continues to improve. Barry
 

CindyM

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Barry, I've been in a plateau since December and am enjoying every minute of it! TO those who have family members who don't get it, I've seen that happen in many cases, regardless of the DX. My sisters hardly ever visit my Mom and when they do, they are always in shock. They expect her to to be as they remembered her, but some diseases marches along at their own pace.

And you can have a very bad DX and look pretty good. We've discussed this on another thread but it happens in more than ALS. My friend's wife has lukemia of a sort that requires treatment 3 times a week. Whenever I see her I am relieved to see how good she looks-as if that is an indicator of how well she actually is. Even I forget that because she looks fine she may not really be OK! Cindy
 

jacquelyn

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Well........do I say it? Today is Day 4 of our miracle! He is so positive about everything. He is planning for the summer. He is going to help paint his deck from his wheelchair. He is going to watch his grandkids grow up. He is going to go to church again.....the list goes on and on. He is still very weak in his legs but he do feed himself now for the most part and can even push himself a little in the wheelchair. I just wanted everyone to know.

Still can't help but wonder........."calm before the storm".
 

JACKIEMAX

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calm before the storm

i want to thank all of you that took the time to answer my questions about family members or even friends that do not 'get it', and understand what the patient and caregiver are going through.

to look at my husband, you cannot tell there is one thing wrong with him other than he's lost some weight and is a little pale from not being out in the sun. a year ago this time, he was out in the yard mowing and had a great suntan. he was healthy and looked healthy.

when i wrote his two daughters in november and told them he was unable to ever travel by plane again, but that we would send that money for 'them' to fly down here, we thought it was a done deal. but they have put their jobs and all kind of things first, and truly do not understand that their dad, whom they both love dearly, could just stop breathing any time of the day or night. i sometimes hold my breath when we say goodnight because i don't know if he will wake up in the morning.

but, when i wrote those statistics to his girls, advising that 90% of all als patients die in their slleep, they just pooh-poohed it, and told me i needed to be more positive and that their dad would be in the other 10% that didn't die. i hope with all my heart that that is true, but folks, how do you deal with that kind of attitude? they think i'm just hysterical, but you all know, you who are reading this post, know that our als patients are living from day to day, hour to hour, minute to minute.

the guilt and regret they will end up living with will be more than they might can bear. any thoughts?

jackiemax
 
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