Long term ALS survivors

[mamaoftwo]

I just wanted to say that in the past 48hrs I have had 2 emails - or rather one email and one pm from PALs who have lived for 14yrs and 16yrs respectively with ALS. One of them isnt even on a vent. I dont want to post names for privacy reasons. If they wanted to come here and tell everyone how well they have done (relatively speaking of course) despite ALS, then they can. But for those of you who are convinced that the 2-5yr prognosis stands true for everyone, well it just doesn't. So chins up people - some of you will live much longer than you think. :)

[caroliney]

Yes you are correct, no one really knows life expectancy for ALS. This dreadful disease is like a snowflake, different forms.

Even the doctors do not understand what, when, or where, this disease may go for whomever. It is a clinical diagnosis.

ALS was first identified in 1869 by the noted French neurologist Jean-Martin Charcot, as a motor neuron disease. Lou Gehig first brought national and international attention to the disease back in 1939, when he abruptly retired from baseball after being diagnosed with ALS.

It is so sad after all these years, still we do not know the cause of ALS.

http://capwiz.com/alsa/home

Click on the above and lets do something for all ALS patients today and stop this thief. Insert your zip code and let your Senators know how you feel about the progress of ALS. It is time to have more understanding than a clinical diagnosis of a disease that is destroying so many lives daily. We can make this change by being heard today.

God Bless and Many Prayers for All,
CALS,
Caroliney

[Mike27]

Hi all,

I was dixed in '93 at age 30. The docs gave me the standard "2-5 years" scenario. I don't need to tell you folks how that feels!

After going through bouts of depression and anger I finally reached a point of acceptance. (My wife deserves a medal for sticking with me through some of my tantrums!)
I have accepted that ALS is a part of my life now, not the whole life, just an annoying part that is as significant as I allow it to be.
The war is over, now I can be at peace.

That doesn't mean I'm in denial. I've just adapted to that which has come into my life and improvised means around it.

We all come to that fork in the road-we can sit on the couch with the TV remote and wait for the end or accept, adapt, improvise and overcome. (I actually got that last part from Clint Eastwood in 'Heartbreak Ridge'...see? You can learn a thing or two from the movies!:wink:)

For a long time people would say to me that things happen for a reason. So I would respond "Then what possible reason would this disease happen to me?"
I thought long and hard about that...and it came to me, through my kids. I have been showing, by example, how to deal with adversity in a positive manner. I got my mind off of how 'I'(ego) was affected by ALS and turned it around as an on-going lesson for my kids that although the body is weak, the spirit can never be broken!

Positive mind. That is my theory in getting through this journey.
We have ALS. There is no getting around it and we don't have a choice about that. The choice we do have, however, is how spend the time we have left-laughing 'til our sides split or in a pit of despair and depression? I've been to the pit, I ain't going back! I'll take the split sides thank you!

Cheers!

[mamaoftwo]

That is what we need around here!:-D

[kelly]

Mike...I love your spirit...keep fighting! I want my hubby to read your post. He can learn from you.

[caroliney]

Mike,

You have the right frame of mind, so continue to live each day with that spirit. Love to hear this type of atitude.

You are a great encourgement, example, and a fighter.

God Bless,
Caroliney :-D

[esrich]

Yes, some people can live a very long time with ALS. On another forum I belong to there is one guy who has had it for 23 years and another woman who is 82 and was diagnosed in 1959. Yes, 1959. There is hope. Keep a positive attitude and enjoy each day. Laugh a lot. Live a lot. Enjoy the time we have whether it is one year or 50 years.

[patricia1]

How do we know they really have the right DX I think there is alot of mimic ALS out there and hopefully alot of us have that one I have als 8 1/2 years.there is alot science doesnt know about MND. people living 25 yearswith so called als is proof So enjoy the days you have and never give up hope. Pat

[Lorie]

I am an ALS Advocate and the Sister of Brother with ALS. I am signed up on everything there is to support ALS. And I am involved with sevral ALS Associations. I will continue as long as I have breath in this body.

I know someone in my community that has had ALS for 25 years!

Lorie:-D

[Mike27]

I am an ALS Advocate and the Sister of Brother with ALS. I am signed up on everything there is to support ALS. And I am involved with sevral ALS Associations. I will continue as long as I have breath in this body.

I know someone in my community that has had ALS for 25 years!

Lorie:-D
I'm glad mamaoftwo started this thread. I find these examples very uplifting!:-D

[JenniLee]

How do we know they really have the right DX I think there is alot of mimic ALS out there and hopefully alot of us have that one I have als 8 1/2 years.there is alot science doesnt know about MND. people living 25 yearswith so called als is proof So enjoy the days you have and never give up hope. Pat

i have wondered the same thing; thank you for your hope. if you dont mind, how have you lived with it so long? every change sends me into a depression downward fearing its all over. what r ur physical restrictions?

love,
jen

[patricia1]

hi Jennielee I did very well for 7years with only slurred speech and little arm weakness last year. Now I am getting worse, I have no use of my arms and some weakness in fingers and hand. My walking is getting slow and I am very cautious on the steps.
I do get depressed ,but I always say it could be worse. I am still here My breathing and swallowing is still good. And as long as my eyes are still open to enjoy my grandchildren and family I am blessed. Pat

[Omar]

Hey guys,
What a nice optimistic thread..
Thank you Mamaoftwo and very well said Mike

[CindyM]

I agree, Omar. BTW, nice to hear from you again. Hope all is well. Cindy

[Omar]

Thanks Cindy,
I missed you too ;) I've been traveling for a while and still
hope u r also doing ok

[CindyM]

My internet connection was out both at work and at home! Usually I can get on in at least one place.

So I hope your Holidays went well, Omar and Happy New Year to you and yours.

[Peg B]

EXCELLENT Mike!! Thank you. This could be in the Happy New Year thread too. Attitude seems to make all the difference. You give us all solid hope for goodness. Sincerely, Peg

[Sandee]

My Best Friend Was DiagnoseD With Als Just Last Week And I Remember Telling Someone after i learned of the diagnosis That I Didn't Want To Say Goodbye To Him In 18 Months And I Also Have Done Nothing But Cried. Haven't Been Able To Sleep But I Also Had Been Doing Research And Just Kept Seeing The 2-5 Yrs. And All The Negative Stuff And So I Thought I Would Come To This Section And I Declare You Guys Have Just Made My Heart Leap With Joy As My Friend Is Very, Very Optimistic And Determined To Not let this dreadful disease Interfere With His Life. Maybe He Has Enough Of A Fighting Spirit To Be Around For A Very Long Time.

Thank You All Here Again For Making Me Feel Better Today And I Too Will Support Als With Everything I Have Until I Take My Last Breath.

Sandee

[hopingforcure]

Glad you are feeling a little better today. You are now another person on board for a cure for ALS, and that is a good thing. We all understand how you felt, and know that in time things will seem better, and even hopeful, the people on this board have a lot of life left in them, and we are all fighting the good fight.. Hope you join us often, and feel a place to voice questions, concerns, and whatever is on your mind. This board is a saving Grace to so many of us. Hoping

[Lorie]

Don't give up hope. My brother Tim has had ALS for a total of 10 years including 3 year DX. We all know how you feel. We have just felt it longer. I don't think it gets easier.
Be there for your friend. That will mean more than anything.

It does take a lot of Will, Faith, Attitude. Keep his spirits up.

Tim is giving up now. But he has had his journey. I am there for him through it all!

Please Read: Tim

http://www.als.net/ffc/familyPage.asp?familyID=328

Mt Friend Bert for 25 years, Please Read: (he looks much different now)

http://www.bertwoodard.com/


Lorie:-D

[Sandee]

lorie, thank you and I just read about your brother and his courageous struggle. How amazing. My heart and prayers go out to your entire family. I do have a question and it's just because I don't understand how this disease works. My friend who is a university professor and knows sadly that he will have to eventually give his job up said it started or affected his heart muscle and I guess I don't understand it affecting or starting in the heart. Can someone explain?,

Sandee

[Al]

Your friend must be mistaken. The heart is an involuntary muscle and is not affected by ALS. He may have had a heart problem before ALS but it had nothing to do with his condition now. I think you hold the new record for posts. More than 10 per day since joining Wed. Not that it's a problem but maybe you should ask your doc about some anxiety meds. We've seen this fixation before and it's not healthy. Getting all wound up doesn't help you or your friend.
AL.

[arlie]

hi everyone --this week has been extremely hard as i have become weak as toast and my biggest concern is my left eye which keeps vibrating-looked in the mirror and can't see any movement-so it is like the vibrating in my body all week-anyway the weakness and vibrating in my body slowed down finally yesterday but the eye didn't
would wearing the eye patch help by keeping my eye closed-would it slow down the vibrating and slow down the als in the eye-i love to read and do puzzles

thanks arlene

[Sandee]

I'm very sorry I didn't mean to post so much.

Sandee

[Lorie]

Sandee,
I agree with Al about the heart muscles. Al you can be blunt. She is scared and looking for answers, just as we all have. After three years of Tim's Dx. If I wasn't on Paxil, Buspar, Valium, Clonazepam. And I didn't have all the responsabilities I have, this would probably be a LORIE FORUM (lol).

Stress an Anxiety does not help. Agreed Al!

Lorie:-D

[vmd]

arlene:

I am sorry to hear you are not doing well. I'll pray for you. Are you saying that your eye is twiching? By "vibrating" do you mean fasciculations? I wasn't aware that PALS had such problems with the eyes.

[Al]

18 posts in less than 30 hours. Of course I'm blunt. If I wasn't the inmates would be running the asylum.
AL.

[ZenArcher]

Does that mean I can take this fancy jacket with the sleeves that tie in the back off???

[Al]

I love your sense of humor man. Seriuosly though. !8 posts plus the couple I deleted because they were duplicates and asking the same heart question on 2 different days which I answered both times makes me think someone isn't bothering to read their own posts and replies or is extremely agitated and needs meds or someone to tell them to settle down. Seeing as I am not licensed to prescribe meds it is a kick in the butt you get. Lorie, I am surprised you would jump on me like that. Obviously you didn't read her 18 posts. You know I don't get on someone's case unless they need it.
AL.

[Lorie]

Al,
I don't see where I got on you. I have nothing but respect for you. I think you do a great job. The Lady told me her computer was slow and may have duplicated her post. She is scared and has compassion for her friend. Atleast she had th nerve to come on the Forum to try to learn about ALS. Her friend is under suicide watch, because he cannot accept his DX which has come so fast. She said she would not be on here for a while, if at all.

I told her she can E-Mail me all she wants. I have picked her up, as I have done may on here.

Speaking of posting, no offense, if I was a Moderator on here. There is a person I would have already shut off. I am tired of hearing about his Soap Opera Life. That shouldn't take much to figure out. I have even had other people PM me to ask if this guy is for real!

On that note: I think I am signing off for a few days.

Lorie

[Al]

That's not the same story I'm reading here. I'll go back and reread her posts but I never read about any suicide watch. I have been wrong before. But almost 11 posts per day is overkill. I just asked her to settle down. I didn't think I was mean about it. As for the soap opera as you call it, quite a few are starting to get angry that he won't take the good advice he's being given. Hope you're not going for a few days because you're mad.
AL.

By the way read post #18 this thread and read how optimistic her friend is. So where did you read anything about him being depressed.

[Lorie]

Not mad at You AL. I always say. I love ya!! She E-Mailed me about the suicide. I am glad you picked up on the other I was talking about. Some people think he is playing us innocent people.

I Love Ya AL! :grin:

[Sandee]

I'm sorry I bothered a few of you here. My friend was on suicide watch in a local hospital when he FIRST got the diagnosis. You all say he doesn't have ALS. 3 Specialists say otherwise and he was on suicide watch when he was in the hospital, after he accepted the diagnosis he is better and optimistic now. Now the only other thing I want to say is I appreciate my time here but I didn't come here to be picked on I came looking for answers and support so I think another group is what I need.

Sorry again,
Sandee

[MtPockets]

Lorie I am glad you are communicating with her by e-mail. Sounds like she needs someone to talk to quite a lot. Which I could understand initially trying to grasp the problem and understand it. Also some people who have never been on a forum of this type may expect an immediate answer to some of their questions, instead of waiting for the group to have a chance to respond. I stand with AL on the kick in the rear. Maybe she just needs to have how this forum works explained to her? :confused:

As for the soap opera case you were speaking of, I get the feeling the whole story is not what is being told. I have even seen times when some people get on forums and start a thread like that one because:
A: They are mental cases who need people to feel sorry for them, all the time.
B: They are bored people pulling our legs to see how far we will jump

How many times do you get advice that tells you how to solve the problem, and yet they continue to tell you their every day activities as like you said they are a soap opera. All that person seems to be doing is getting everyone else depressed and all stirred up about something we really can do nothing about. This is the type I would not be surprised to get a pm or email from asking for money to help them move out.

But, then again it may all be true. Who knows. There are all kinds of people in the world. You and I know what we would do in the same situation, but apparently this person just wants to talk, talk, and talk about it. I would feel better if I saw some action behind all the words.

[CindyM]

:-DGeez-I go away for a few hours to help my daughter with her broken ankle and come back to find everybody in a tizzy! Gosh you guys know I can't help but add my 2 cents so here goes:

Al-spot on! I'd also told Sandee that anti-anxiety meds do wonders.

Lorie- don't go away. You are our best advocate for the over-anxious.

MT- good point: I bet people new to this sort of thing think they are communicating in real time. I never thought of that.

Sandee- you are a great friend. Oviously this man has made an impression or you would not care so much. He sounds like he has the inner resources to cope, though. If you are trying to find the same sort of strength for yourself, you might be more successful if you focus less on what his illness means to you and more on learning all you can about the disease. the search feature at the top of this screen is a good place to begin.

There. I'm done! 2 cents inserted! BTW Jeff, after you take off that coat with the arms tied behind you, can I borrow it? Hubby says I've needed one for years! :-D

[givenin]

Wow the reading is HOT today! Makes my soap opera life seem not so bad with all the family crap. But here is a feel good one to share with all. I have a group of friends who have been sending me a gift each week that I find on my doorstep when I come home from work, they have planned it that way knowing how anxoius I geet before I walk in the door.They started with the first week after Xmas my true friends gave to me, It was a certificate for my favorite coffee. We are now on week 8. The best was when I found a six pack of Rickards Red, beer, after a tuff day at work. Good friends but I can't tell them things or vent like I can here about how things really are so Sandie keep on just take a deep breath and hang in here there is very good advice and help.

[Lorie]

Capt. Al, AL, Cindy, Jeff, CJ
Sinced I joined this Forum last year. People have joined and gone and passed own.
You mean so much to me. Like another part of my Family. We all have different personalities. We are here to share what we know and learn. You are some of the Nicest, Bravest people I know. I am honered to be here. Not just because of ALS. Because I feel like I know who you are. When Tim was first DX. It took me months just to come to the Forum and read. At first I tried but I just couldn't do it. I was in denial, that this can't be happening to my brother. And then Grief. I then realized I had to get a Grip. Help my brother and get involved with ALS. With your knowledge and patience has helped me in so many ways. I do vent sometimes. My mail objective is to Support, Care and be Compassionate to people. And help with ALS.

I just wanted you to know what you mean to me.

Cindy, AL will have to cut me off before I go away (lol)

Lorie:-D

[Sandee]

I will say here too that I do appreciate everyone here so very, very much and yes we all have different personalities and I just happen to be one who wears my heart on my sleeve and can get my feelings hurt very, very easily and I have been hurt, but those who have taken the time to write and email me just means so very much to me and I just want to say thank you all again.

Sandy

p.s. I honestly want all to know that my p.c. was running slow and I really was uncertain as to how the forum was ran as well.

[CindyM]

You are welcome, Sandee. All's well that ends welll, as my Grammie used to say. :-D

[ZenArcher]

Cindy if the wife ever let's me out of it, it's all yours :)

[CindyM]

LOL, Jeff. Why do those who know us best think such things? I hope it is not beecause they are in a position to know us at our worst moments!!:-D

[ZenArcher]

You know what they say if the straight-jacket....umm....I mean shoe fits..... :)

[Steve100]

Some people think he is playing us innocent people.




I think so too...glad I'm not being paranoid.

[olly]

hi al/cindy and all
regarding the person in question,i have emailed alsa for help.
they will email them to arrange home visit,ive asked alsa to email me back so im sure there is corospondance between them and the situation is being sorted. ill let you know when alsa email me.
mpockets,i understand your concern. in uk last week there was a program on it,i cant believe people are so nieve,i am not but give people the benefit of the doubt as a christian i can not sit back and let someone suffer but i know theres only so much i can do as im not well and have my own problems.
best wishes to you all
caroline

[Al]

Thank you Caroline for taking the time to care. I hope he really does need help and you are able to help him get it. Please let us know.
AL.

[Lorie]

Caroline
I agree with you, believing in helping someone in need. We have tried and tried. I have tried personally many many times to offer help in getting in touch with him to get help. It had took all this to maybe get there. I wish you well in your efforts.


Lorie

[olly]

ive just recieved email from a renee lowery at north texas alsa. they have been in touch with delb and are arranging a home visit,clinic appointments ect. they will do everything they can to help him,im waiting for email from delb for more update.
im so relieved and happy for him,ive asked him when he feels ready to come back to the forum.
best wishes
caroline:-D

[CindyM]

Thank you for helping, Caroline. I do not think I ever saw anyone so stuck in the "it won't/can't work" line of thought. I know sometimes it is easy to get into a negative frame of mind and you seem to have found the way to cut through it. Good job!

[Lorie]

Caroline,
You have done a great thing. Maybe we have contributed to the "Push". It is already hard enough to "Live" with this disease. Everybody with or without it needs to enjoy what "Life" they have to the fullest and not be sentenced to more Misery than they deserve. I really hope it works out for him. I am trying to find new ways now for my brother to be more involved in "Living Life" at the stage he is in. I am a Optimist and constant negativity gets to me. No matter who it is.

I really hope things get better for him, Emotionally and Living!


Lorie

[olly]

i have read the link about your brother and my heart goes out to you both,tell tim to try and hold on we are all with him in spirit and prayers. i think your amazing taking care of your brother and still find time to help others here,god bless you both.
as for bert WOW,he is one big insperation it just shows what positive thinking and
outlook can achieve
god bless
caroline

[Lorie]

Thank you!

That was a nice thing for you to say. My brother is Awsome, I Love him sooo much. There is nothing I wouldn't do for him. Bert is Amazing. He has made a big difference in my life. He has given me so many inspirations. I try to help with ALS as much as I can. This Forum, Meetings, Awareness, ALS Advocacy and many other things. I have come to have my own little support group. (well I am not sure its so little anymore).

Lorie:-D

[MtPockets]

Here again we see the main reason for the forum in action. Caroline great job. I'm glad you were able to persevere and reach out and get him the help he needs. I do hope and pray all is well with his situation and it works out for his good.

You are right to chastise us as being quick to jump to the wrong conclusions. We have to sometimes be jolted to remember each and every person is different and their situation is different.

God Bless you for being there when he needed you the most.

[olly]

sorry its taken so long to reply. thankyou for your kind words,i was not chastising anyone i can understand people being wary with all the scam's etc going on on the web.
del is doing great, i have daily contact with him by email,also renee lowery from alsa keeps me updated,they are going to see him today and have alot of help lined up for him.
alls well that ends well lol.
god bless
caroline:-D

[Sandee]

And I hope I am doing this correctly on this forum! Believe me I do. I did want to come on and give an update after a couple of people asked me about him. My friend Max, is still attempting to teach and go about his daily life to the very best of his ability. I did learn that he is on several experimental drugs and is weak and in pain and so we just take life one day at a time and we will just see what today brings.

I sincerely thank those of you who asked about him. He is an extraordinary man.

Blessings to all.,

Sandee

[Sandee]

I wanted to take this time to thank all of you so very, very much, especially those of you who have wrote and asked about my dear friend Max as it means so very much to both him and myself and while I may visit from time to time I think I for the most part have found a local group that I feel more of a part of and I don't really feel so paranoid over talking on the forum with them and accidently maybe posting to much to them and here I don't want to mess up again and I'll always be afraid that I will mess up here again unfortunately and like I said I will still visit here from time to time as I think it is a great forum, and well just again I do thank you so very much for your kindness.

Thank you,
sandee

[Al]

Sandee. You didn't mess up. You just over reacted. I'm really sorry that you think you'll mess up. Lots of people have come on here and did exactly as you did. No one told them to leave and no one wants you to. I hope if you don't hang out here you'll at least let us know how Max is doing.
AL.

[Thumbs Up]

Just in case anyone wondered I am still checking in once in awhile. I hope to soon be able to be of some help. You are all very brave and caring people. I hate this disease more each day. My son was arrested again last night, this time I have made up my mind I will not bail him out for the 3rd time. It is strike 3 you stay in jail. I want so much to help on this forum and the fight against ALS in whichever way that I can.

[Carolan]

ive just recieved email from a renee lowery at north texas alsa. they have been in touch with delb and are arranging a home visit,clinic appointments ect. they will do everything they can to help him,im waiting for email from delb for more update.
im so relieved and happy for him,ive asked him when he feels ready to come back to the forum.
best wishes
caroline:-D

Thanks for the update, Caroline. You are really nice to have done that. I haven't been on here very consistently, but I did call a local church a while back to see if there was anyone in town who could help him. Not much helpful advice from them, and then I just got so exhausted reading those posts that I stopped paying attention to it.

My mom and I watch Days of Our Lives to experience other people's soap operatic experiences vicariously. We laugh about how they always use oxygen tubes in the nose to indicate that a person is really sick in the hospital. No matter what, the oxygen is always there, along with outdated equipment. Nothing at all like our hospital experiences.

[Sandee]

and I wanted to let all know that my friend Max is doing well for the most part. He has lost weight and is in some pain now but is trying to keep his spirits up. Thanks to all who have pm'd about him thus far.,

Sandee

[olly]

i am glad to hear from you and that max is ok.i was rather worried about you when you left because you thought you had done something wrong. we all put our foot in it sometimes,i know i definatly do. please keep in touch and let us know how you and max are getting on, we are always here if you need support,to chat or help.
god bless
caroline

[alperstein]

Hi pals,
I am not a frequent poster but somehow I am here again. I Just wanted to let you know that surviving with ALS is really variable. As come to me, I am a Limb onset sporadic ALS patient. Dx at the age of 28 in Hou/Tx - August 1990, no family history, I am an ophthalmologist also (retired), married to Elcin, we have a daughter Ece, my wife is dentist, I used to play classical guitar. I have caregiver (Abla), during daytime 08:00 - 18:00 I can use my Standing powerchair, still speaking and eating. I'm on trach+vent since March 2004 I can type by onscreen keyboard
So far so good :-)
Best wishes to all:)
Alper

[Lorie]

You are very inspiring. I have a local friend with ALS for 25 years, on vent for five. He is very uplifting and has just wrote a book on "Living with, Not dying of ALS".

Also my brother has acceeded the Norm. Living span for ALS DX.


I think more post like yours can be very inspiring to other people. Not to give up. I also realize that our own bodies have their process.


Not giving up here!!

Lorie