Holidays and ALS

[aprillb26]

Hi everyone. This is our first Holiday Season with ALS. My Dad was diagnosed Jan 20th unofficially, Dr. didn't tell my Dad until June 9th, worst day of our lives. We are all trying to stay positive this holiday season and make everything as normal as possible. It's hard with all the changes that come with ALS. We downgraded to a smaller tree this year and ordered food. Wrapping presents consists of gift bags and tissue paper when it use to be elaborate wrappings with handmade bows. It's always just my Dad, Mom and I. We're a little nervous about having everyone over as no one will understand why it will take my Dad an hour to eat, he may choke, and he'll need to use his Cough assist machine most likely. I can only hope the "outsiders" (as I call them) will acclimate quickly and not cause any uncomfortable feelings for my Dad. Thanks for listening.

 

[KimT]

I would call them ahead of time and let them know what to expect. Have they not visited your dad or are they coming from out of town? People need to be told. I still have people who were friends and nieces and nephews who expect me to entertain them or don't understand the pain and want me to "get out and have some fun." You just have to educate them. You dad is blessed to have two people who can care for him.

 

[Firefighter58]

Sorry to meet yon here,aprillb26 but it is what it is. I agree with kim, I have the same problems as your dad and like kim says my family has informed all guests that they may see my finger in my mouth the odd time but that is just the way it is. I have learned to eat that way and it may also take me an hour to finish my meal but that is the way it is. My wife will now give me a smaller portion when we have company and the I can finish about the same time as everyone else.
Al

 

[KimT]

When I first went to local ALS support meetings (before I had any pain and I was pretty much functional and still walked fast) there were three bulbar onset PALS. About six of us would go out to an early dinner after the meeting, along with CALS. I would drive ahead, get the tables ready and make sure the staff of the restaurant knew what to expect. Two others had no movement in arms or legs. We had the best time. We all ate differently. Some of us were fed, others took 90 minutes to eat. We all enjoyed the company. I told a joke and one PALS spit his drink out and we all cracked up.

Al, any good guest would wait for you to finish and engage in good conversation. You eat until you are filled up. Or eat something before you sit down.

 

[Atsugi]

I ALWAYS eat before any dinner with others. Then I eat lite during dinner and focus on them.

 

[KateEmerson]

Hi April, I am happy for you that you found this forum earlier on than I did because it is a wonderful to place to go for advice and sharing emotions with people who understand and know what you are going through. I agree with Kim and Firefighter that it's good to let people know what to expect. I found that surprisingly most people did not seem phased by the kind of things ( and worse) that you are describing. I would try to give them an heads up if I needed to do a cough assist or something else unusual happened with the offer to please feel free to wait in the other room if they would feel more comfortable. Only a few people chose to do that and that was ok with my husband and I as we truly wanted everyone to enjoy their time visiting it's us. I am hoping you all have a wonderful Christmas.