can you explain this?

[jacquelyn]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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

[Al]

Jackie ,you can lead a horse to water but you can't make him drink. You have done what you can and should not feel guilty. They will be the one's having guilt. There's not much you can really do if they won't listen or realise what is happening. Take care.
AL.

[zac111]

i wpould have to disagree with some of these responses there are a few cases out there where people have stopped progressing and even gotton better so there is hope mabey not alot of people have done it but it has been done.there was a story in the mississippi press today about a 6 year old that had a massive stroke the doctors said the whole right side of his brain was dead.now the child is walking and talking the only complain he has is he doesnt have full use of his thumb the doctors are saying on record that this is a MIRICLE.

[Frizzel]

I agree with Al. We can not make people do what they don't want to do. Sometimes if people aren't faced with the facts, then they don't have to do anything about it.

I had a woman say to me, "If I knew you were that sick, I probably wouldn't have wanted to get to know you." Not because she didn't like me, but because she didn't want to have to deal with her own stuff around death. Hey, none of us know what tomorrow brings. My husband takes me down escalators, you'd think we were trying out for Ringling Brothers CIrcus by the looks we get. What if he was stung by a wasp and let go of me sending me down to the bottom of the escalator alone strapped to my 'Chairiot'. Just a thought... You say such kind things about your husband Jackie. Maybe just focus on your lives together. Did you ever cook up those Brownies?

Also, I agree with Zac, that sometimes miracles happen and sometime the miracle is, that we find the peace in the midst of the storm. Like one big eye in a mondo tornado.
Love others and dance with life, go to bed with no personal regrets and let go of the need to make people try to understand is how I try to live. I will die from this disease UNLESS there is a miracle of healing. We're open...so Jacquelyn...'In' Joy that your dad is feeling better...What a gift to all of us, that we could have the possibility of 4 days or more that we feel great!


Cheers for the present~Frizzel

[CindyM]

Frizzel- I love your attitude. thanks for sharing your wonderful outlook with us! And the stories about you an your charriot are just icing on the cake! Hugs, Cindy

[liz]

Hi Jacquelyn -

I think it's great you dad is feeling so much better. As far as an explanation, I think Leslie may be on to something. All we can do is speculate but I have to wonder if for some reason your father just made a decision to stop being any more helpless than necessary and get on with the rest of his life. That in itself is a miracle which you can enjoy everyday even if it is "the calm before the storm".

Best wishes,

Liz

[jimercat]

Jackiemax-

my husband's family is the same way. his father was miffed at me for telling the family the avg life span of 3-5 years and told everyone he knew someone that lived with it for 18 years and basically i didn't know what i was talking about. (the sky is fallin...the sky is falling!) turns out this elderly person had been kept alive on machines in a home. one of brother-in-laws came out and said "there aint nothing wrong with him!"

and what's the point of whether you live 3 years or 18? you still have the horrible disease! you're living it! I guess they might come around when he's finally in a wheel chair. Wha't funny is when my husband is talking to my father-in-law and mispronounces somethning because of his speech problems. my father-in-law will correct him and explain why he's wrong!!! he is clueless. my husband just looks at him like he's lost his mind.

oh well...
cj

[CindyM]

When my Mom first started losing her memory my sister thought Mom shoudl try harder to remember things. Then when Mom started to forget our names my sister said it was no use going to visit because Mom doesn't know who she is. The person who loses in this is my sister. Mon has accepted what is happening to her. Sis will one day have to face how she dealt with Mom's illness. This is what I think. Cindy

[JACKIEMAX]

when i came to the forum tonight, i was still pretty much frustrated that my husband's two daughters have their heads stuck in the sand pretending nothing's really wrong with their dad, but when i read all the lovely posts you all have put in here for my benefit, i have changed my thinking on this.

the advice to just have as much joy in life as he and i can until God calls him home, is the advice i choose to live by from now on. when we first told his oldest daughter about the 2-5 year lifespan of limb onset als, which my husband has, her first remark was 'there is a lady in my office that has had it for over 6 years, and the only way we can tell it at all is that her voice is a little different.'

i've tried to explain that every patient's symptoms are not the same at the same times, but to no avail. trying to make those two daughters understand how bad this monster disease is, and that their dad is losing ground fast, is just giving me a headache.... lol

and so, today, i change my way of thinking. i will from now on try and make every minute of every day a happy one for both of us.

they will have to live with their guilt, not me.

thanks to all who wrote. jackiemax

[CindyM]

Jackie, you are so right!!! We cannot change others, only our reaction to them. I like your description of how you decided to think differently about the situation. All day long in my office I watch people get all in a dither about something that: a) doesn't matter if you consider the fact they still have their health; and, b) it is always something that requires somebody else's action. But you, my friend, have the right idea! Enjoy your day with Hubby! Hugs, Cindy

[chesterlicous]

This is truly a miracle my friend. My dad was unfortuantly unable to save himself from ALS, but your father seems to have a gardian angel watching over him, cause your story is truly amazing

[Jamiet]

One thing.....HOPE!!!

This is HOPE and will lift everyone's spirits..........

I hope it continues to get better!

[vmd]

Prayer and hope, a good formula for success. Since my wife was diagnosed with breast cancer, I started to log on to a discussion forum on breast cancer. One of the threads on that forum deals with success stories. Mostly, these threads relate personal stories of people with breast cancer who have survived for a long time or have beaten the odds. Could we do the same here for ALS? I know these stories always brought me hope. Now, that I am facing my own illness, I could certainly use such stories.

[CindyM]

I hope you find some happy answers when you go to the Doctor, too, VMD. How is your little girl holding up? Cindy

[mandem]

I haven't been to this forum for a while. I guess I needed a break from ALS. I posted the story of my wife's ordeal back in February and I greatly appreciated all of the responses and genuine caring that followed. I came back today because ALS is on my mind again.
I told the story of how my wife was diagnosed in, what we considered, a dubious manner. An EMG at the emergency room at OHSU in Portland. We were also a bit confused by her symptoms, many of which didn't seem to be consistent with ALS. Reading Jacquelyns post about her father's improved condition reminds me of our own situation. When my wife first experienced weakness and numbness in her ankles, back in August of 2006, her symptoms seemed to progress rapidly, and after her dx in September, she was obviously in a state of hopelessness and despair. As I wrote before, she seemed to feel worse and worse until just before we went to Providence Hospital ALS Center in Portland in December to get a second opinion. The results of that visit were inconclusive. Inconclusive was so much better than ALS! Of course, that lifted our spirits immensely and she has felt pretty good since. She does have constant, severe back pain and has experience pain in her joints (especially wrists, hands and elbows). She is weak and feels fatigued much of the time has experienced intermittent, migratory numbness. Up to this point, the symptoms do not seem to be progressing and she has never had facitulations(sp?) or spasms of any kind.
Now, we have scheduled a follow-up appointment at Providence for May 18. As the time nears, the anxiety builds. Obviously, our hope is, that the Doc will say something like "ALS, get outta here!". We have been living under a sort of "don't ask, don't tell type of mentality for the past several months and it has preserved our sanity and kept hope alive. We are aware, however that this visit could go the other way. Her dx could be confirmed. Our vacation from ALS could come to a screeching halt and our world could crash down on us once again. At some point though, I guess one needs to know even though knowing could mean the end of our "blissful ignorance". Truly a dilemma.
The last few months have been a time like no other in our lives. And if we are bound for bad news, that time will be a treasure. And as I pray for healing (and misdiagnosis) each day, I also thank God for the blessing of that time. I guess my point (which I've strayed far from in this post) is: Jacquelyn, if Dad feels good one day, or one week or even one hour, cherish it. Hold on to it. It's a blessing. It's a miracle.
I ask all who believe to remember my wife and me in your prayers. Those who don't or don't know, think a good thought.
I pray for you all and I am so thankful for you all being there for all of us.
God Bless all of you.

[CindyM]

Hi Mike-glad you came back to visit us! Your emotional esperience is so much like my own, I empathaze completely. I, too, am on a "vacation" since I seem to be in seem sort of plateau. It makes you think twice before going back to the clinic, doesn't it? We'll put put all the positive energy and prayers that we can drum up that this next visit for your wife goes well! Regards, Cindy

[Frizzel]

I've heard wonderful things about the ALS clinic in Portland. You're in good hands. I appreciate inconclusive rather than saying something they aren't certain of...ESPECIALLY ALS. All the best to you and your wife> SPring is here in the Northwest..In Joy the dogwoods, lilacs, (There's a lilac garden in Woodland you and your wife might like to visit.) and may be also remember the cherry blossoms.
All the best with your May 18th appointment! Frizzel

[Al]

Hello Mike, good to hear from you again. Please let us how the appointment goes.
AL.

[papaw50]

In reading your email regarding your father's improvement and giving God the praise!
Just wanted to reply with "WE BELIEVE IN MIRACLES" and hope that your dad continues to improve. God is in control and He can answer prayer. We should not limit what God
can do. Taking one day at a time! That is the best advice.

Dave and Patty