Such a short time, such a long road.

[Tx Daddy's Girl]

It's hard to believe that since we first heard the words "possible ALS" on April 22 that my dad would be where he is today. What was some twitches in his biceps is now full blown. He barely can use his left arm and his right is going quickly, he walks well but slower paced and with a hint of foot drop, he slurs his speech and chokes occasionally. He is refusing a PEG and vent so I know my time with him is brief. It kills me to see this man whom I thought could fix anything and conquer all has been reduced to a shell of himself.

In a way, the fast progression is a blessing and he won't suffer as long but the selfish person in me is fighting for every moment with him. I'm going to be answering tough questions from my 7 year old daughter soon and I don't know how I'm going to do it. Thanksgiving and Christmas are going to be tough - how can I be joyful knowing its most likely my father's last?

This disease is a cruel joke - how is it that it strikes the healthy and vibrant. I know Hod has a plan but I struggle with how His plan can include so much suffering.

 

[pearshoot]

it does seem to strike the healthy that is one main reason I think its the environment, air we breath, water we drink and food we eat. twenty years airborne paratrooper, sports official, exercised regularly and WHAM. agent orange after 2 tours in VN. cynobacteria for gulf war vets and in another 10-20 years another surge in ALS for present conflict vets for same reason

 

[NewbieJess]

I'm sorry to hear about ur father that sounds really sad :/

 

[R9L13026]

Tex,

I sure hope your wrong. You don't mention, and your previous posts don't mention any respiratory or eating problems, some weight loss from the muscle atrophy. From your June post his neuro is going to reevaluate in Dec. This will not be your last Christmas together!

Yes this disease started in his hands/arms. Probably will move to the other extremes his legs, first one then the other. But this isn't a constant progression. It will plateau, maybe take years. Other times it seems to have faster progression, but keep helping him to fight. You thought 7 days into the DP plan made him feel better. Reality it takes months to really have any effects. Maybe it will keep him from having Bulbar symptoms.

For me it started with my legs then my arms/hands. I plan on being around for another 10 years. I've loss 40 lbs and 7 inches off my waist.

Keep the faith.

 

[affected]

so sorry to hear how he is progressing, some are slow, some fast, some intermittent.

I don't know if this helps, but try to just take a day at a time, try to enjoy everything he has on the day, and try not to put a time frame on anything.

This means, don't think this could be his last 'anything'.

This could be my last Christmas coming up, I have no idea what life has in store for me, I may not even be here for Christmas. I'm not being trite, it is true, anything can happen to anyone at any time. I don't have ALS, but that doesn't mean I must have more time on this earth than my PALS, there are no guarantees in this life.

Today your father is with you, and has some functionality, so enjoy today. Tomorrow he may progress more, or he may plateau, or something else, but that's tomorrow and we adjust as we go through each day, week, month and year.

That's one way I try to cope anyway - celebrate each day with what we have.

It's not denial, I am also organising all the time to try to be ready in advance for next stages, but not worrying that the next stage means the end or when it will be.

hugs to you

 

[Barbie]

Hey Tex, Don't be so sure this will be his last Christmas--I have thought that myself several times...here we are again. While it seems fast to you, compared to some it is not such a fast progression. All you can do is keep living each day and try to enjoy the time you have. simple words but hard to follow. But they are the truth.

My husband started a lot like your dad, but the ALS decided to work on his body and go slower on his breathing so he is still here. the breathing is the thing that gets them. just because he doesn't want a vent doesn't mean he doesn't want a bipap, which is non invasive and very common. and the peg--he may change his mind but even if he doesn't--it is his decision.

for the holidays, just go low key and do the things that are most meaningful--take lots of pictures, spend time together. don't get all caught up in the hustle and bustle because he can't deal with that and it ruins the holidays anyway.

everything will be ok and I would bet that this will not be his last Christmas...

All my best

 

[Tx Daddy's Girl]

Tex,

I sure hope your wrong. You don't mention, and your previous posts don't mention any respiratory or eating problems, some weight loss from the muscle atrophy. From your June post his neuro is going to reevaluate in Dec. This will not be your last Christmas together!

Yes this disease started in his hands/arms. Probably will move to the other extremes his legs, first one then the other. But this isn't a constant progression. It will plateau, maybe take years. Other times it seems to have faster progression, but keep helping him to fight. You thought 7 days into the DP plan made him feel better. Reality it takes months to really have any effects. Maybe it will keep him from having Bulbar symptoms.

For me it started with my legs then my arms/hands. I plan on being around for another 10 years. I've loss 40 lbs and 7 inches off my waist.

Keep the faith.

My dad started having the muscle wasting in June and since then he has started to have some respiratory issues - nothing big. He actually was scheduled for a PFTS today and he cancelled it, I hope he reschedules. He did feel better with the DP but we can't see a difference, that being said, who knows where he might be if he wasn't on it. He also has the PBA and is taking Nudexta and it's helping.

 

[Tx Daddy's Girl]

Thank you for your posts and I hope you are right. If he plateaus, I hope it's soon and not when he is completely paralyzed.

 

[goolia75]

So sorry to hear about your father's progression. I lost my dad to brain cancer when I was 19 years old. It is hard to watch a loved one regress. Take the opportunities you get to tell him how much you love and appreciate him. And take many photos. Also. try to not think so far into the future. He very well may be with you for Christmas.

 

[SMP51]

"It kills me to see this man whom I thought could fix anything and conquer all has been reduced to a shell of himself."

you need to stop seeing him this way! He is the same daddy you always had and he is struggling every day beyond any thing he ever "conquered" or "fixed" when you were his little girl. Although you can not see the strength any longer does not mean he is any weaker of a man, he carries a cross heavier than ever. He is still your Champion.

and yes you will have a lot of questions coming from your daughter, hard ones. We also have a 7 year old grand daughter. We didn't wait for the questions to come. She knows her Grampy is dying, not today, not tomorrow, not next month, not any time soon, but that he is sick and one day because of it he will not be with us any longer. If she has questions they are answered gently, simply and truthfully. She needed to know to value her time with him and in retrospect one day be able look back admire the great strength and grace her Grampy faced life's struggles with.
We have found with her, that by making ALS simply a fact of life she is not afraid or uncomfortable. She sits in his wheelchair, sneaks up on him from behind to surprise him and sometimes tickles his feet because she knows he cant move them.
One day she was being a saucy little brat to him and I heard my daughter take her aside and tell her "remember when you cut your foot and got stitches, how bad it hurt? and you couldn't walk or go to recess or PE for a few weeks? Well your Grampy's feet hurt EVERY day and he will NEVERr walk again, so you need to always be nice to him"...and she was very stern with how she said it. My first response was to think that was a bit harsh, but my daughter was right, it is what it is and sugar coating does not help.
I am not telling you how to handle your child, only sharing what has helped us.

but it might help you if you start looking at it as living with ALS, that is how I handle it. We all die, that is just a fact, we just have today, this moment, the next is not promised to any of us. Yes we plan for tomorrow but we live in the now. My husband says if he were to dwell on the future he would find himself in a very bad place... and so we live very much in the now, and if its a bad day we sometimes got to take it a moment at a time.
Your Daddy is living with ALS and is here today, none of us know when our last Christmas and Thanksgivings are!
your Daddy needs you here in the now not in the tomorrow.

and sometimes deep breaths help
God bless you