Introduction - my 71-yo dad has just been diagnosed

[D Flip]

I have been lurking on the forum for a few months, since his symptoms began in late July/early August 2012. He's had 3 EMGs since September 2012 and just the most recent one last week finally showed what we have suspected - bulbar onset ALS.

I have already learned so much here but still feel at a loss. I was hoping beyond hope that I wouldn't need to put any of this information to use! But his condition appears to be progressing - [thankfully?] for now it's strictly bulbar symptoms. He has a terrible time clearing saliva, can't eat much in the way of food without coughing up a storm, and can't talk clearly. He still has good muscle strength and can get around.

We're working on getting a PEG tube placed this week. My dad and mom aren't absolutely prepared for it but he has such a hard time with swallowing and has lost so much weight that the doc really strongly recommends that he proceed, without too much more delay. I have read Rose's blog but can't enlarge the pics for some reason (is it because I'm a newbie?). She is a great source of information; thank you, Rose! Does anyone else have any tips or things they wish they'd known in advance before going in for the PEG? I know that he should expect some muscle soreness from the actual insertion and we're preparing for wound care. It seems that finding the right formula is a matter of trial and error. Anything else?

Next, doc recommended that he get set up with BiPAP. I am for some reason really overwhelmed with the info out there about the various masks and flows and all of that. Is there a sticky on this somewhere? Or a post?

We also got Rx for ril uzole but the doc didn't seem too enthused about the modest impact on survival. We're still weighing the cost and side effects vs. the potential benefits.

Thank you, and hello. No offense to anyone, but I am heartbroken that I am here.

 

[momap53]

So sorry that you need to be here. It's wonderful to see supportive family members.

There have been several discussions about Rilutek here on the forums. Try using the search engine to bring them up.

Some PALS resort to using real food processed in a blender and thinned with broth or water if formula is not tolerated. Ask if the tube will be large enough for this. There are many types of formula. If one doesn't work for your dad, contact his clinic for an alternative. My Clinic Dietitian doesn't recommend "real food", but I would like to know that it's an option if I have trouble.

Masks for BiPap are a personal choice. A good RT will help him to find one that he is comfortable using and will make sure it is well fitting. If there is a problem with the mask he is given, don't hesitate to contact his provider right a way. It's essential to have a device that is comfortable and well tolerated. You can check them out on line to see what types are available. I love my nasal pillows! I can talk, drink, and even use my eyeglasses to read. I also have a face mask if I have trouble keeping my mouth closed while in bed.

A former Neuro nurse who has ALS has a website with some good info and tips. It's called ALS from both sides dot org.

 

[hangingon1]

It all depends on quality of life. If he is as far along as you say, he will not last much longer without a PEG tube. Swallowing and aspirating liquids usually results in pneumonia. My pal, refused a tube but she was a quad. When she started to choke on everything, I thought we were headed for the end, and we were. She died about 2 months after swallowing difficulties began.

 

[sadiemae]

Here is a great video. There are 3 parts

https://www.alsforums.com/forum/general-discussion-about-als-mnd/20107-must-watch.html

 

[WellsRuby]

So sorry that you are here but a great wealth of knowledge can be found here and lots of support. Sadiemae has given you the link to a great video that really helped me at the beginning.

 

[skipper66]

Welcome to the forum D Flip but sorry for your need to be here. I'm sorry for your need to be here. Wish I could help answer some of your question but my dad's ALS started with limb onset not bulbar. There are alot of people on here that are more then willing to answer your questions. Hang in there. We will do our best to help support you. Kim (Skipper)

 

[marypat]

the bipap will help so much. i had a peg placed in oct and i'm glad to have it. his energy will probaly increase slightly after he gets both. it is alot of information to process. your mom and dad are reeling from the diagnosed. i see you are in MI. there is alot of support services there. contact the ALS ass and see if they have someone that can come out and talk to them. it would be better in their home. easier and they would both be more comfortable. good luck to your family

 

[D Flip]

Thank you for the support! I looked at the videos before he was officially diagnosed but well after his symptoms started. My parents have watched them and found them very informative.

His PEG tube placement went overall very well. He's up to full feeds with very little pain at the site itself - he did have problems with constipation pain after taking all of the tylenol and codeine.

Working on following up with the ALS clinic and getting started with BiPap. He hasn't gotten his prescription for riluzole yet. His main problem now is how impossible it is for him to clear his saliva. He's tried most meds including Botox. He's still on Robinul but it doesn't really help.