Not sure what happened

[starente15]

Hi everyone. Visiting my parents this weekend and having a 48th anniversary party that my dad only recently found out about. Tonight he saw the invite and broke down. He couldn't get himself under control and started gasping for air for several minutes. Does emotion cause the breathing to get worse? I'm extremely worried about hel'll react act the party seeing people he hasn't seen in years and a video we put together of old photos.

 

[Atsugi]

The emotion seems normal, but the breathing might be affected by ALS.

If his diaphragm is already affected by ALS, then he wouldn't have adequate lung muscle to quickly catch his breath

The lungs are powered by two sets of muscles, one voluntary and the other involuntary. ALS affects the voluntary side.

Not sure if that answers your question.

 

[starente15]

Thanks. The diaphragm is affected. It was terrifying and I'm so worried about the party being too overwhelming.

 

[cheerleader]

Why don't you ask him if this is what he wants? With my hubby,as things progressed,big gatherings were just too overwhelming. Sure the video of pictures will be something he treasures- and even if he tells you he doesn't want the party, he will be grateful for the love and caring of his family. At this point, everything needs to be about what HE wants. His choices are so few. Good luck- and whatever happens, sure it will be special to both your parents.

 

[lgelb]

Maybe ask him if he'd rather be in a separate room from all the mingling and have one-on-ones in a side room or deck or something? It can be exhausting to try to talk above the noise level of a party.

 

[skipper66]

I believe getting upset does cause a PALS to have more difficulty breathing for sure. My dad usually doesn't have too much trouble yet with his breathing. But, if he hears something upsetting he has started to gasp before and it has been extremely scary. If he gets too worked up over something he will really struggle.

 

[tripete]

Star, YES strong emotions will affect his breathing. Like your dad I have found that if I am upset my respiratory onset is affected. I think it is simply a matter of emotions making me breath to quickly and the muscles not being able to keep up.

For what it's worth, I think his reaction to the invite is OK. We are dying of this disease and there are reminders all the time of the reality that we wont be around much longer. I watch TV and see it, I look at the expiration day on my license and see it, and definitely seeing anniversary dates would cause one to see that they may not be there for the next one.

My advice would be to surround him with things he wants and likes. As a PALS I find that I am constantly trying to do what everyone else wants to spare them emotional distress. It feels like my emotions are not even considered most of the time. I think this is because there is so much focus on the physical part of ALS. So make sure the party is what he wants and not the family. This may seem selfish, but he will find it a comfort.

 

[Green Queen]

Gosh Pete you hit the nail on the head...it's very exhausting trying to make everyone feel ok about my diagnosis and what the future holds. I don't like it to always be about me, but some days it just needs to be. Everyone has our best interests at heart, but that's not always the answer. I am in no way an expert at all of this and can't imagine your inner torment, and I pray that your own advice is heeded by those closest to you: that you are surrounded by things you like and want. God bless, Janelle x

Star, all the best for a wonderful celebration, however it happens. God bless, J x

 

[MaxEidswick]

>Tonight he saw the invite and broke down. He couldn't get himself under control and started gasping for air for several minutes.

see a pulmonologist - don't guess. maybe albuterol or anti-anxiety med. I have terrifying sessions of not being able to breathe in :-(

 

[rosec]

I think you and your mother are the best ones to decide what is appropriate, knowing how he reacts to situations. These celebrations also play an important role in keeping the spirits of our PALS high.

We recently celebrated my husband's 60th. I baked a cake (I love to bake but don't get much time these days), and some friends brought finger foods. It wasn't a surprise, but we told him 3 or 4 people will be coming, instead of the 30-40 people we were expecting. To keep him from getting too tired, we told the people the party will be from 4:30 - 7:00 pm. One of our children always stayed with him during the party to 'translate'. He enjoyed it so much that when some of the people who came late were ready to leave at 7, he insisted they stay longer. I think the last ones left around 7:45. The next day he told us that when we told him only 3 or 4 were coming he felt a bit let down, and when he saw that a good number of people came he was extremely happy!

 

[gooseberry]

Always ask about company and outings. It gives Steve the choice but also he has the option for extra rest that day if he feels he might need it. Also, he won't plan to do anything the days before or after since he gets so tired.

 

[Barbie]

I think it takes a pals (mine anyway) time to prepare themselves for large gatherings and lots of emotions. we recently had an Easter party with all his family--but I cleared it with him before hand. and either me or one of our kids stayed with him the whole time. he also ended up on the patio because he could not be around all the hustle and bustle with fast moving, loud people. the party spilled out there anyway, and everyone came up and talked with him more calmly.

Really, it is a lovely thought but I would make sure he wants a big party. if he has emotional lability, he is going to be a basket case the whole time.

 

[Barbie]

you could also make it an open house and schedule smaller groups thru out the day, giving him time to rest and recouperate in between

 

[starente15]

Update: It went very well! We had several out of town relatives and I staggered their visits prior to the party so he could talk to them one-on-one at home and avoid the emotional reaction of seeing them for the first time at the party. We also got to the venue first so he didn't have to walk into a room of people. Had an open chair at the table for people to visit. He seemed to enjoy it and did very well on the emotional aspect.

 

[hjlindley]

Please don't surprise him. And ask him directly if he wants a big party. I really hate big crowds even if they are my friends. And I can't move because I have to turn off the chair when they come in for a hug unaware that they can send me flying across the room. And yes will get upset it can be very difficult to breathe. And the emotions are heightened with ALS. Good luck! I know you're trying to help but give him some control over what's happening.
Hollister