New member

[PIKCKAP]

I used to believe nasopharyngeal carcinoma was the hardest thing I’d ever endured. And if truth be told, it was, up until September 18th 2015 when I flew from Reno NV to Sandy Creek NY to visit my sister Tia, (******) and her husband, Bill. She’d been misdiagnosed for several years and as her doctors dollied & dallied, the ALS that invaded her advanced. When I was on my knees, climbing out from under my own shadow, I clung to the one thing ALS has ripped away from Tia, Hope! That one thing, no matter what, no matter how dire the situation, we all have a few ‘God I Hope’ moments. Reading the ALS web site where it states ALS is always fatal was downright traumatic, and my belief is that statement desperately needs re-wording! Perhaps something like ‘So far, nobody has survived ALS’. Nothing except death is ALWAYS – Nothing! And the moment you exit your mother’s womb, you are scheduled to die. Cancer was like a pimple on my ass compared to what she must endure. I was not prepared to see her in this condition, nowhere near prepared. To see her confined to a wheelchair, unable to scratch an itch, move her feet, arms, turn her head, her speech steadily more difficult to understand. NPC S4-C was tough, real tough, but without a shred of doubt this is the hardest scenario I’ve ever endured – I’m a bystander affected only because this is my sister. And the care-giving extends to anyone needing care. This is part of being human.

 

[CarolSue]

Sorry to hear about your sister and what you are going through with her. I was diagnosed this month and am reeling with every emotion out there. This site is great for support and suggestions, but some tell it like it is without much sugar coating. We ALL know what the end result will be but sometimes a little compassion and tact is in order.

Reminds me of when before I was diagnosed and was "lurking" reading posts on this site before I decided to post myself. There was a person who was desperately trying to get info on whether on not they had als and kept posting symptom after symptom. The regulars kept trying to assure this person that they didn't have ALS. One regular actually said something to the effect.....If you've had these symptoms for 4 YEARS, frankly you'd be DEAD by now! Yes she did...she actually said that. And this is supposed to be a support group. I've also seen other comments by some that basically were trying to remind others not to be soooo harsh by telling newbies...you don't have ALS you need to move on. Wow, is all I can say.

There are soo many nice people on here...the good out weigh the bad. So please don't be discouraged. There are plenty of people here that can be a good source of info and a shoulder to lean on.

CarolSue

 

[KimT]

I have a few comments to make regarding this forum. First, many people here use one finger or eye gaze technology to post. It's a miracle that they keep coming back to make valid, experiential contributions and help educate those of us who are new and those of you who care for or know someone with ALS.

There are others who have lost someone to ALS yet they still pay money each month to help us! These people take selflessness to a new level and we are blessed to have them.

Sometimes tough love is needed to help those who don't have the disease move on and get the professional and medical help they need. The moderators work day and night to help these people as quickly as possible so they won't have to waste their time, energy, and sanity wondering if they have ALS. There are many other forums that just let people post back and forth with no meaningful moderation and that is what keeps this forum head and shoulders above most.

This forum does offer hope. People post the latest research, what they are doing that helps them, and plenty of encouragement for us to live life to its fullest. Nobody knows how long one will be on this earth, no matter what disease or level of wellness one has. Stephen Hawking has been living with ALS for a half century. Perhaps none of us will come close to that but some here have lived for a good long time. We must have hope in research, in quality of life, and (me personally....in God.)

I'm so very sorry for your sister and your shock and sadness in seeing her. Hopefully, you can make more trips and do little things to make her time here better. Even cards and phone calls are appreciated. Love goes a long way with people.

 

[Nuts]

Pikckap, this is a miserable disease to deal with, and the shock and trauma once experiences when the truth of it becomes clear is--well--as you've described.

This is a roller coaster ride. I've found acceptance is all that allows me to function, but I have to regain it over and over. With every change I allow myself to pretend that this is it. I know intellectually that there's much, much more to come, but I can't dwell in that future.

We cannot enjoy what we have left without some sort of hope. Hope, however, becomes something different with ALS. Some hope for a cure, whether or not it will come in time for them. Some hope for a peaceful passing. Some hope for beautiful memories within the scope of this new reality. Your sister may have found her own new definition of hope; I hope she has, and that she can share that with you somehow. If she hasn't, perhaps you can help her find it.

I'm sorry you are having trouble with the prognosis. We all do, but I for one need to know the hard, unvarnished truth. I need to know because I have to prepare for the rest of this journey-for what I must be able to do to support my husband--and for a future without him. To me, false hope is cruelty. We know what's coming, so we value our time and relationships above all else (something we were not as good at before this).

I think we all have triggers. For me it's the look on the face of someone when I tell them my husband has ALS when that person really, really knows that this means. I can always tell if they have known someone with ALS. I just want to crumple at the look of compassion and pain on their face. To me the written words are much easier to deal with.

Welcome to the group. I hope we can help you with what you are facing. If nothing else, just posting where others understand is a gift.

Becky

 

[PIKCKAP]

Sorry to hear about your sister and what you are going through with her. I was diagnosed this month and am reeling with every emotion out there. This site is great for support and suggestions, but some tell it like it is without much sugar coating. We ALL know what the end result will be but sometimes a little compassion and tact is in order.

Reminds me of when before I was diagnosed and was "lurking" reading posts on this site before I decided to post myself. There was a person who was desperately trying to get info on whether on not they had als and kept posting symptom after symptom. The regulars kept trying to assure this person that they didn't have ALS. One regular actually said something to the effect.....If you've had these symptoms for 4 YEARS, frankly you'd be DEAD by now! Yes she did...she actually said that. And this is supposed to be a support group. I've also seen other comments by some that basically were trying to remind others not to be soooo harsh by telling newbies...you don't have ALS you need to move on. Wow, is all I can say.

There are soo many nice people on here...the good out weigh the bad. So please don't be discouraged. There are plenty of people here that can be a good source of info and a shoulder to lean on.

CarolSue

I'm back home, after spending 5 months of living hell and plan on returning to help my sister spend the remainder of her life with Dignity, Grace & Peacefulness as soon as possible. This God forsaken, insidious ALS may have stolen her muscle movement, it shall never destroy these.

I have found this a fantastically helpful based site. Be advised; there is always a 10%. Hang in there and enjoy life CarolSue. Thank you and, God Bless

 

[PIKCKAP]

Hello Becky:
To set the stage for what I’m about to explain, allow me to explain the following. In 2005 I was diagnosed with nasopharyngeal carcinoma (NPC), stage 4-C; an 11ct tumor behind my eyes, tucked up under my brain, had metastases into a lifesaving alert by a 4ct tumor jutting out my neck. Given 4 maybe 6 months, no more than a year to live, I assure you, there was a BC – there is an AC. The decision to beat this insidious cancer and treatment, or die with dignity giving it my best trying, was made then and there. Treatment damn near succeeded.

My sister has always admired the tenacity with which I fought for life and has told me, and there, that I am her inspiration. ALS, as I’ve stated to my sister and she understands, that in her advanced stage, there no known treatment, and is terminal; how far are you going to let the Quality of life decrease? Had this been four, five years ago, I’d be right there fighting with her, she’s a fighter no less tenacious than I am. Death will happen, and is going to happen quickly, so die with dignity. I’ve expounded on there being nothing I can do to stop it. All I can do is offer compassion & empathy, companionship & comfort, and all the brotherly love your hearts gonna be able to handle.

We’ve listen to Goodbye My Friend & And When I Die, among many other songs, as I’ve massaged and exercised her atrophied muscles. Relaxed her with a shoulder massage as we reminisced of our childhood. And while I thank God every morning for getting outta bed & evenings for enjoying such a beautiful day, in the same breath I beg Him to take her as quickly & painlessly as possible. As I said to her face, it’s been a time to be proud of, now pass on with dignity not babble. This advice I would offer anyone under the same situation. And ALS has a different situation, same completion on every victim. I’d rather pass on when the time comes, while enjoying the company of family & loved ones.