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vladi50

New member
Joined
Jan 15, 2012
Messages
1
Reason
Loved one DX
Diagnosis
07/2011
Country
US
State
South Dakota
City
Sioux Falls
My Dad was diagnosed with ALS in July. Looking back, he had been saying to us for several months that it was hard to project his voice. I didn't really notice anything though, I suspect his voice gradually weakened over several months before. He complained that it was hard to raise his arms above his head when he was standing, but could when sitting. My red alert moment was when I saw him trying to lift my 6 year old nephew and couldn't. Followed by the awful day when, after riding horses since he was a toddler, he wasn't able to get himself up on his horse. My active, strong, horse riding, barn building, bale throwing dad. He had been losing weight and just not feeling good. Anyway, his primary dr didn't have a clue, but sent him to a rheumatologist, who suspected ALS and got him ASAP to neurology.

And life as we knew it changed.

His fatigue was immediate and overwhelming. His arms have gotten weaker, has to use one to try to help eat with the other arm. Legs are wasting and now having tons of fasciculations. He failed a sleep study and has started bipap. Needs help with most ADL's. Appetite has been poor, but he is trying. Over the last few days, his respiratory status seems to have worsened. He is feeling short of breath at rest, and is visibly winded. He is still able to talk, but voice is so weak. He has started to choke over the last few days. 40 lb weight loss since July.
It seems like Dad's ALS is aggressive. I am a nurse, as is my mom. But we don't have experience with ALS. His neurologist tells us that it is early, and that she is hopeful. I don't believe that. In 25 years of nursing, I remember only one ALS patient. And I remember thinking with him, what a devastating illness and that it seemed so unfair. I hate to ask my questions at his neurologist's when he is there. Questions like, What usually happens at the end? I assume respiratory failure. Is it awful? How comfortable can he be? If he refuses a PEG tube, then what? The thought of him starving horrifies me, yet they are his decisions to make. I will support his decisions. Thank you for listening and for any advice
 
vladi50, I'm very sorry about your dad. Even the neuro will not be able to tell you how long he has, nor will they likely do so (except for the usual 2-5 upon diagnosis).

It does sound like he needs to decide whether he wants a PEG before his breathing becomes a real issue and they are unable to do the procedure. Choking can last for a very long time and he will need to adjust the consistency of his foods to eat by mouth. Watery liquids will need to be thickened, also. He will need to look into assistive tech for speech (very important to do because of learning curve).

Questions like, What usually happens at the end? I assume respiratory failure. Is it awful? How comfortable can he be?

I can kinda answer that, as my husband is currently on hospice and has breathing issues. They have put him on methadone. This decreases his anxiety about not being able to breathe. He also uses a BiPap and they can adjust the settings for pressure. My husband is very happy now that he can "breathe."

Go to the MDA ALS website and download the pdf manuals for caregiving. They cover just about everything. And when you don't find an answer there you can ask the forum members!

Don't give up hope yet!
 
First, let me assure you that it is very possible to have a quiet, dignified ending, where the PALS does not suffer at all, even emotionally, during the final days.

Several of us have gone the whole journey through to the end, and written with some detail about what to expect.

Two important questions right now:
Is he a veteran of the military? That makes a very big difference.
Are his Advance Directives in writing and will his family support those wishes, regarding PEG, CPAP, DNR, intubation, in-home death or in-hospice death, etc? That can make for a much better, less stressful final year.

I agree that this seems like a fast mover. Maybe not, but I'd get prepared for it.

As to asking questions, I always ended our medical appointments with a private few minutes, away from my PALS.
During the appointments, the docs always quoted the party line about average life span and living a good life in the remaining years.
But after the appointment, I pulled them aside and always asked the same thing: "I need to do some practical planning for expensive home modifications and such, so I need to know: are we talking three years or three months? What your best guess?" The doctors always said, "I wouldn't buy a house, one year, tops." They were right. It was 8 months.

Don't give up your hope for sunshine, but carry your umbrella for the deluge, anyway.
 
Vladi50, I'm so sorry that your Dad has received an ALS diagnosis.
You'll find lots of folks here who are willing to share details of their journey in hopes that others will find comfort in their stories.
One person that I know of who opted for no Peg was "Abbas child", and her husband "Annie's Phil" tells the story of her last few months in one of the threads about the final days. "Atsugi" also tells about his journey with Krissey.
Check out this thread: My young spouse has ALS, whats next? in the General Discussion forum.
 
Sorry you are going through this. Hospice care and his wishes are what should drive this. This will hardfor and RN to deal with, so don't be afraid to reach out to your friends and other family. Try hard not to mourn what is gone (certainly easier said than done). I have been brutally clear to my husband what my wishes are and I am choosing my path. It may be the only choice I have left. Let any of us know what else we can do for you. But every case is clinically destinct so the neurology team will be the best predictors.

Again, so sorry you are here with us.

Holly
 
vladi50~Sorry to hear about your Dad's diagnosis. It is awful, my Dad was diagnosed last February. The Dr's gave him the standard 2-5 yrs. His started in his left hand & at this point both hand/arms are done, my Mom has to feed him. His legs will be done sooner than later. His speech has also gotten worse. At first he just spoke like he had a few too many drinks but it is getting harder to understand him.

My Dad also chose not do the PEG & has a DNR. These are his wishes & we all respect that. My Dad is also a veteran & the VA has been outstanding with providing needs for him & my Mom. If your Dad is a vet I would look into this ASAP!

As you read thru posts here you will find that this Evil ALS varies from person to person. I feel my Dad's is rather quick & it just plain S.U.C.K.S!

This forum is awesome though! There is a lot of advice given, personal stories shared, hugs when you need them & when you need to vent, ears to listen to you. Stay strong you are not alone!
>>>>HUGS<<< to you & your family!
 
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