Last Hope gone

[nebrhahe53]

Ive been to the Houston clinic twice, in October and two days ago. During that time, my breathing has deteriorated rapidly and they found denervation this last time in all my limbs and trunk. The first time in October I was told there was a small chance I might not have ALS, because they didnt see denervation everywhere, now there is no doubt.
I think my hospital stay with the peg tube fiasco really set me back.
Needless to say, I am quite upset.
The interesting thing is that the neuro there told me ALs does not have to be a death sentence-really?
I can now barely stand and hold my head up or use my left hand.
Additionally I have neuropothy so in addition to losing function I am losing feeling too.

 

[MaxEidswick]

>I can now barely stand and hold my head up or use my left hand.

came back from Houston Methodist yesterday -- all down 25% or so, IIWII ("It Is What It Is!") ...

Hang in there Neil! You are not alone

 

[bigmark1954]

Neil...sorry about your reality.
I think there is always a little denial we hang on too. But progression always makes it more real....
I keep hoping that I will wake up and be able to speak again. Then I realize that this ain't Fantasy Island.

 

[skipper66]

Neil,
I'm not going to pretend that I know what you are going through. Because, I'm not living it so I really have no clue. But, my dad said the only way he is able to not go crazy with all this stuff is to take it one day at a time. He said it he focuses too much on what the future may or may not bring he just can't handle it. He tries to focus on the present day and make it the best possible.
My mom when she got cancer and it turned terminal she had a prayer that she would pray that she would have a happy death when the time comes. This did not mean mom gave up living in the meantime. She continued to laugh and when she had enough strength made it to her favorite travel spot Las Vegas. She talked to another lady frequently who was also fighting the same battle and encourage her.
I know my mom did not have ALS but cancer. But, her oncologist spoke to me privately and said her last days would be awful. I got angry at God and told him if my mom did have to die that I wanted her to go peacefully and pain free. My wish was granted Neil. If there ever could be such a thing Neil my mom had a beautiful death. She got to say Goodbye to alll those she loved. My dad and I held her hand through it all. She took her last breath with a smile on her face.
Neil, I don't know what your religious belief are. But, if you have even the slightest faith at all. Please grasp that with all you got. I got mad at God many many times . But, he can take it. He will not abandon you. Look up the poem Footprints sometime if you haven't seen it already. It it explains it all.
I'm sorry if I through religion into the mix if it offends anyone. But, then again they can choose not to read this post. But, God is the best medicine you have right now. Kim

 

[nebrhahe53]

Thats my greatest fear that I will not have a good death. That and I guess missing all the wonderful things that will happen in this world that i will never know about.
Just having a hard time today I guess.

 

[bigmark1954]

We all have dark days, even dark weeks. This is and emotional roller coaster we are riding.
Some times it seems all to real, and that becomes all that we see

 

[nebrhahe53]

yeah Mark you are right. I honestly dont know how guys like you and max and Dalvin can stand it.

 

[nebrhahe53]

And I have to say, it really pisses me off when I look at some of those dihals posts or the one today from the guy that wanted sympathy because his dad dies of als a while ago.

 

[GregK]

Lots of that going around Neil,
I've lost more in the last 6 months than in the preceding 18, which is when I got diagnosed. 3 months ago my FVC had dropped from 93 to 81 and I can easily tell I've lost more since. Walking even with the Rollator is a major chore.

Two thoughts on why the doc felt als might not be a death sentence any more:
1) we seem to have lots of new research; the Genervon and Brainstorm efforts come to mind
2) DPS can extend 'normal' breathing and venting (non- and invasive both) can extend assisted breathing.

So while there are dark days I remain cautiously hopeful.

 

[Nuts]

Neil, I wish that I had words to offer--I just can't imagine facing what you are facing right now. I think that Max and Dalvin are fortunate in their ability to find humor--I'm sure it helps keeps them sane (really, did I type sane and their names in the same sentence?). I find Matt and I having conversations, calmly and matter of factly, that would horrify others (or the fact that we are calm would horrify them). Certainly we all deal with this monster differently.

We've never been faced with something we couldn't fight, so acceptance is very new to us--but it's the only thing that keeps us moving forward right now. If we focused on the horror of loss instead of constantly looking to maximize what remains, I don't think that I could handle what the future holds. Of course, we're somewhere behind you on his trail, so who knows how we will handle things when we catch up.

Anyway, I hope that tomorrow dawns a bit brighter for you--don't let anger at what you won't experience taint what you can.

 

[davbo49]

neil, i thank it's the same when we look at those posts to.

iiwii. one day at a time and what day and how we get it. it's is still a bonus.

 

[affected]

Thats my greatest fear that I will not have a good death.

Neil I do think that having the very hard conversations with your wife and with anyone who works with you at home is a key to this.

Think about what is acceptable to you and what is not, and use this to discuss plans for types of situations.

Chris and I did have some talks on this very early after his diagnosis, and then one more set of discussions that was more centred on making a definite decision for him to die at home.

You had not yet joined here when Chris passed. He was at home, candles burning, lovely music playing, me looking after him on my own, giving meds as my gut said he needed and he was very peaceful and free of any pain. In fact, he was the most peaceful he had been in a very long time as mostly he had been ravaged by the way FTD had changed his whole perspective. I'm not saying this is how you want things, but I'm saying that we had planned in advance that I could give him this ending and I did.

I also had plans on how to handle things if his death had been more around a sudden crisis situation rather than a decline.

I'm so glad that we had the discussions early when his speech allowed full conversations and before the FTD affected his ability to discuss anything.

The end can be done well, if you can settle that in discussion, then maybe you can relax just a tiny bit to focus on that one day at a time we all talk about. I know I could never do more than that, sometimes I could only do an hour at a time!

 

[skipper66]

Great advice from Tillie. You have to have those conversations. But, don't forget to enjoy today to the best of your ability as well. We all need to focus on this rather we have ALS or not.

 

[gooseberry]

Neil, I am sorry you had some of your hope taken. Every day my husband gets up seemingly trying to not believe it. But, like you, as things change there is no choice but to acknowledge what is happening to you. I think that is the hard part...the choice being taken away. My husband has also had many fears about how he will die and where. I have encouraged him to discuss this with his doctors and I carry his health care surrogate,living will, advanced directive paperwork with us. He received some relief letting the doctors know just what he wanted. He decided to not die at home and to donate his brain/spinal cord for research. He figured if he could so something to help the next people stricken with this, he would do it. So I would say to think about what it is you consider to be a good death. Talk to your spouse and get it written down and communicated to your doctors.

 

[Music67]

Neil - My heart sincerely goes out to you (I am supporting you in my prayers everyday). While we all know that almost everyone of us is in a different boat symptom-wise I do know of several examples of people living with this monster 10, 20 even 50 years so hang in there! Don't give in to anxiety which only makes things worse.