progressions... need some care here

[sarahunni17]

My dad was diagnosed in August with ALS. I am 26, and he is 52.
I live an hour and a half away from my dad, and have a feeling I will be moving down with him to help be a caretaker.

I know it's impossible to predict the progression of the disease, but perhaps you can share some stories for me about progress of your loved ones ? I'm trying to figure out how soon I need to drop my job and get an apartment down there...

Right now he is weak in his arms and legs. Can stand and walk for periods of time. Easily fatigued. Slurred speech and speaking in slow sentences. Fine motor skills are starting to go in his hands- hes having trouble unbuttning pants, shirts, etc.

Thanks
A newbie in the forums!

 

[trfogey]

The best predictor of future progression is your father's past progression. Our stories are of no use to you in that respect. Your question gets asked here very often and the answer is always the same -- if you think the progression is fast, plan accordingly, because it is much better to act early than it is to play catch-up. In short, if you wait until the last possible minute to do something, you will be late and you likely will regret it.

Good luck.

 

[sarahunni17]

Thank you. I know in my heart you are right- I would rather spend more time with my father, then wait till the end of the end.

 

[sarahunni17]

I guess I wanted people to share stories so I could tell if this is a fast progression or not?

I'm thinking it is. .

 

[Pandora]

My husbands progression is super fast. He was diagnosed is 01/12/11. It started with weakness in his legs. He went from walking "normal" to a cane in a month, cane to walker the month after, walker to chair 3 months after, and then in July he went to bedbound. His voice started to go in may and as for a month ago, it is gone. He got the G-Tube on October 30th along with a PIC line. The best advoce I have is this, you can get nothing too ealry! It is better to have it take up space when you don't need it, rather then need it and not have it! I quit my job as early as Feb. File for the disability NOW! Become his Payee as soon as you can, once his voice goes, Social secuirty will not be able to help YOU if they can't talk to him. Get a medical and duriable power POA.

 

[Jason's Dream]

What others have already has said is true.

Every person with ALS has a different progression rate.

That being said, his speech and all will never be better then it is right now. So if you want that time with him. To talk to him, get hugs from him, do things with him, preserve memories with him... RIGHT NOW is the time!

Hope this helps you see what is really important. You will never regret the time you have spent with him, but you could regret the time you should have spent with him, and didn't.

The day my husband was diagnosed, I quit my job the same day and made the most of the time with him. We made a ton of memories, and I don't regret one moment. The only thing I regret, is that we didn't have as much time as I would have loved.. that being said, it would have never have been long enough.

My husband started noticing symptoms in December 2009, was diagnosed 18 days after we found out we were expecting our second child in April 2010, and he passed away 2 weeks ago to the day, today, on our daughter's first birthday.

This disease robs soo much, soo be stingy, be greedy, and be glad you made an investment in time that will forever be priceless to you when this disease takes your father.

I am sorry your father has this terrible disease, and hope that you guys take this time to make memories that last a lifetime.

 

[Pandora]

So right Becca. I was happy to see you post. You and Jason and the kiddos have not been far from my thoughts.

 

[Jason's Dream]

Thanks hon. <3 Been a hard day for me. And am not looking forward to my FIL's funeral tomorrow. Just thought it might help. Hope it does anyway.

 

[sarahunni17]

Thank you for all the advice. Everything as far as social security and disability is already in place (Pandora) and his main caretaker is his wife . I appreciate this forum and will post again soon I'm sure. Best of luck to everyone else also!

 

[Mrs C]

Being proactive is SO much better than having to be reactive. That has changed things for us mentally. It makes us feel like we are in control of our destiny...at least better than before!

 

[Tom's Support]

Make your move!
Tom has been 11 years now. The past two weeks, however, things have changed so quickly. Losing your grip, having to sit still rather than walk - big changes at the time, but small in comparison to losing the ability to eat, to breathe. These losses are so frightening and they make the progression seem so rapid.
If you move now, you can get set up with a good job, a good apartment. You will be able to help your mum so she doesn't burn out. You can set your place up as the "get away" for her, for you, so you are not too far away, but AWAY.
Think of the possibilities, you can do so much good and get/give so much love if you do it today!

 

[Georgia Peach]

Our first neurologist thought my husband's MND might be PLS. He thought Scott might have 10 years, but we're glad to see one year.

His disease started with tremors in his right hand and right foot drop, then cane, walker, no stairs, scooter, power chair, loss of use of his dominant right hand, using a bed pan, no walking or standing, bronchitis, pulmonary embolism, pneumonia, transfer using the board is coming to an end. Back in the hospital again.

When they call it a progressive, fatal disease everybody is different and how it affects your loved one makes no sense.

Treasure every minute. Speech is being affected now along with breathing.

 

[sarahunni17]

Thanks again. I will be moving down soon- need to get some finances stable and a way to continue to pay my loans/credit cards set. Can't let MY entire life and credit go down the crapper- and I will be down there living with him. Blessings to you all.

 

[mhaviland]

Im new to this site too, so here goes. A year ago my husband developed severe trouble breathing as well as swallowing, after a whole lot of missteps, including pulling teeth ( thought his jaw was tight because of dental problems..NOT ) he ended up with a trach and a feeding tube, his original diagnosis was MG, but I knew in my heart this was not it. Im a RN working in a small rural hospital for 30 years. He really started to get worse earlier this fall, purreed diet has gone to almost all jevity with a 50lb weight loss. His speech is failing, so after 2 other neuros found a lovely compassionate MD in Kingston NY wwho did the single fiber emg, with the als result. while the diagnosis is "new" to us, the magnitutude of the disease is not, especially to me, who gentle has to prepare her husbad of 35 years for the enivitable. I still need to work to pay the bills 3 12 hr shifts a week, and so far he's doing ok on his own. I call everyday at noon, he has lifeline and is able to feed himself jevity ( and his morning cup of coffee) he suctions his own trach, and while weak, he is able to get around the house. I suction him at night and keep up with his meds. By the way, we did a trial of the "itialian study" what a nightmare, I dont recommed=nd lithium to anyone! so now we have good days and not so good days, holidays are quickley approaching we had the 2 small grandchildren 6 and 4 here decorating the tree, I will not let this insidous disease define us, we try everyday to find something to laugh about, my husband says Im his cheer leader. so kudos to all of you caregivers and suffers. Ive a new appreciation at work for what familes go through. thank you all for truly understanding

 

[HelenL]

mhaviland and sarahunni17, welcome to our crazy world, where no one really wanted to be, yet we root for each other, share our tears, fears, information, and many laughs. There are a few "lighter" threads here that you should look for as well; the Come for Tea thread is up to more than 300 pages of chatter, and there's a new thread about our Busride...

So I guess we should all hold on tight to each other, and enjoy our rides...