Swift decline?

My dad was given the dual ALS/FTD diagnosis in Nov 2011. He has had hunched shoulders for the last couple years prior to his diagnosis however over the last two days he can barely hold his head up. He is bent over and his chin touches his chest. Is it usual for muscles to decline virtually over night? He has absolutely no concept of his illness so it is a challenge to help him. Is there anything to help him that we can talk to the clinic about if he is uncomfortable? Could he be in pain? He tells us he is fine and there is nothing wrong with him.

J,

I'm sorry that your family has been going through this. When do you go to clinic next? Every case is different, so I can't tell you if it can happen over night. It may be possible that he was slowly progressing and you just hadn't noticed until the neck muscles just couldn't hold his head up anymore? Do you know what I mean? Like little by little and then the neck said I can't do it anymore and then it happens. You might want to ask about a neck brace, there is a guy here that sells them. I know his name is Shane but can't remember his sign in name. Al would probably remember his name.

As for pain and having FTD, I can't help you there? Does he have a ho me hea lth nur se come in? A c n a? Anyone that takes his blood pressure? Often times when there is pain, the blood pressure increases. Is his breathing okay with his positioning? I'm sorry I can't answer your questions, but if he has a nur se that comes in, I would surely ask them. Or a call to his doc tor.

Many prayers,

Oh and J,

There is a section here for those that have F T D. You may want to let your fingers do the walking through the different threads and see if any are similar. There are quite a few CALs here whose spouses had F T D also.

And welcome to the family, sure wished we could have met somewhere else.

Many prayers,

Thank you for your response. I made a call to the clinic on Friday and the OT will be coming out on Monday with collars. We are doubtful he will wear one however we have to try. He has admitted to his back being sore so we will have to see about pain meds which he is also unlikely to take. There is no home care at this point. He feels there is nothing wrong with him so is not receptive to medical assistance. My mom has said however if this progresses that he can't stay at home which is devastating. What a challenge.

Hello Everyone!

First off let me say I am sorry to read about the swift decline of your loved one has made, I know it can be daunting as I am faced with the a similar situation with my sister.

My sister was diagnosed with ALS March 9th and she has gone down hill very rapididly. Her symptoms are Bulbar and started with what we thought was a sinus infection, she had a very nasaly voice, from that she progressed to slurred speech, and by the second week of April she could not talk at all.

In mid April she was having trouble breathing so we called 911 and she was hospitalized. she became extremely weak and they plaed a PEG tube. She also seems to be in a lot of pain which is something new she did not have before and the doctors all find interesting because they say there is usually no pain associated with ALS. Before all this started years ago she was diagnosed with Fibro and I still wonder if there is some small connection between the two or did she have ALS then and they thought it was Fibro, anyhow....

She was in the hospital for most of April with pneumonia, came home for a few days but went into respiratory failure and was hospitalized again for several days. She came home on a Thursday two days later (Saturday) went into RF again, she has been in the hospital since May 5th. This time they performed a trach and she is currently on a vent. I have read on many of these forums that everyone is vastly different in how the disease manifests and progresses but has anyone seen this rapid of a decline before? We are working on trying to get her a portable vent so she can come home but that in itself seems to have another whole set of problems that we are rapidly learning about. What a ordeal this has been. My heart goes out to anyone who has this disease and any caregiver or loved one who has to watch what this ailment does to people.

Sister, I'm afraid some might not see your thread, as it's in an older thread...there is a blue button at the top of all the main forums to start new threads.

Some with bulbar onset seem to decline rather quickly, others take quite some time. There is a machine called a Trilogy that some here seem to like as a home vent.

And, as to ALS not causing pain--I'm afraid you'd get mixed comments on that one. Some find it very painful.

I doubt there's a correlation with fibro--but that would certainly enhance HER pain responses. That's what fibro does. The ALSA might be able to help with regard to getting a vent for home. I'd suggest contacting them.

I'm so sorry you've had to find us and that your family is dealing with this. Make them treat her pain. Lung infections are the killers with ALS, I'm afraid. Hopefully, they can get it cleared out before she comes home.

Do a search in the search box for 'vent' and look for posts by JoelC. He's passed away now--but was vented at home for years. Liz is another long-term member here, and her fiance was also on a vent for many years.

Welcome to a group that no one wants to need. You'll find tons of support here.

Sister in need-- I replied to your post--it went to moderation, I'm afraid. Should show up sooner or later.

I found my lift recliner to be so comfortable ..ALS can come with pain.Muscle is like a cushion over bone and nerve and after l lost muscle I am like the princess and the pea.I feel the slightest wrinkle in my sheets to give me pain
Do you have a hoyer lift. That is helpful if you need to transfer him .Its easier on his body
Remember he is bent over and that is painful .See if the doctor will give him something for his pain .

I will have him in my prayers

Patricia

Thank you all for the information and the advice and the support. Somedays I am feel completely overwhelemed, but being able to come here and read and search out information has really been a great help. Thank you all again!