PALS ROLL CALL NEW THREAD (PALS ONLY) [Wednesday or whenever]

[Nikki J]

It is nice to meet you silver and look forward to getting to know you

you are lucky to see Dr Goyal. Good luck with getting into a good trial

 

[EricInLA]

Nice to meet you Silver Oak. You have (presumably) named yourself after a very fine wine. Sorry you have to be a member of this club (unlike the Silver Oak club) but if you have to be here, this is a good place to be. Lots of helpful information as you've probably seen. I see we have some things in common - I'm also in Southern California, and I also started with right arm and hand weakness; in fact, during this time of year with the cold weather, that extremity is more useless than usual. Thankfully, the rest of my body is still functioning normally (mostly). I was diagnosed 2 years ago but have had symptoms for 3.5 years now. Good luck with getting into a trial. There is support available to help you navigate the clinical trial process.

 

[wmilo]

Hi, Liz. Welcome to the forum. (But sorry you're in this group.) Your post yesterday gave me a smile. I was complaining last week, but I liked the way you put it. I'm fine too.

Hi also to Silver Oak - welcome. Look forward to hearing from you.

Regards,

 

[AlDowns]

Merry Christmas all!
Kind of new to this forum. My diagnosis was confirmed about 4 weeks ago.

My current successes include successfully communicating this to my four adult sons. The next step is communicating this to my grandkids. Tomorrow will be the first try at this; sitting down with two sweet granddaughters, ages 10 and 8. I have a prepared script with some of my bad jokes embedded to soften it a lot. Their father has chosen to only introduce the discussion that Grandpa may be dying some time. They have not connected any dots.
They are the youngest and closest. This weekend I will have the opportunity to do this with two other sets of grandkids - one of whom is very sensitive. this will be challenging. In all cases, the parents and Grandma will be in the setting.

Pray for us as we do the communicating- and that I can hold it together myself.
Thanks to all of you that have already done this yourselves

 

[KevinM]

Hi Al. I’m so sorry about your diagnosis, but we all look forward to hearing more from you and what sounds like a beautiful, close family. It was hard enough (as you learned, too, with your grown sons) breaking the news to our then 25-year old daughter, as she and I are extremely close. Conversations like these are so delicate, especially since your grands are at an age to mostly understand what you are conveying to them.

I have spoken with a couple of my pALS friend that were diagnosed at an early age and had to tell their children, and they shared some helpful advice for other parents. I’m sure others on here can help as well, and there are some very helpful online resources about talking with children when facing a terminal diagnosis.

I have no doubt you, your wife and sons have thought this through very thoroughly, and are tailoring your conversations to be either more or less detailed depending on your grandkids individual personalities.

In general, my pALS friends suggested 1j focusing on the living part, since none of us knows how our progression plays out; 2) let them know that this illness is not contagious (a concern for lots of children especially with what they know about Covid); 3j tell them that you will still be the same Grandpa even though they will eventually see some changes, because your illness will eventually make it harder to use your arms and legs, and they might start noticing that you don’t talk as fast or as clearly (if you currently have bulbar symptoms—if not you might want to hold off on that part for now); 4) that you will probably need to use a wheelchair someday, but not to be upset because it will help you get around better; and 5) be honest about the fact that while there are some medicines now that can help a little, there is nothing right now that a doctor can prescribe that will make you get better. You might want to let them know that there are a lot of scientists working on medicines that might one day be able to help.

And of course the biggie that will probably be asked. Will you die? There are so many ways to answer that, so I won’t even suggest how best to respond. Since it sounds like you and your family have strong faith, you might want to include that in this part of the discussion. I remember one pALS sharing her diagnosis to her three children, and when that question was asked, she started by saying “okay, who here thinks they are going to live forever?” I thought it was a nice intro into the discussion about death in general and the fact that death is natural and nothing to be afraid of.

My thoughts are with you and your family, Al, as you have these conversations, especially here at the holidays. All my best, Kevin

 

[AlDowns]

We had a great family gathering for Christmas. I did put a damper on the gathering as I shared my ALS diagnosis personally with two sets of grandkids. They already had heard something about it from their fathers - my sons. But it was my chance to share what has been happening - the weakness, the fasciculations; and more importantly what the progression can look like. They were not pleased when there was a re-emphasis that there is no remedy, treatment, or timeline.
I did have the privilege to share with them that I will be able to listen to them even if I can not talk - I will still love any and all communication from them.
Lots of tears welled up in their eyes and mine. The parents were present during the conversations so that the support groups could continue the message and help them get there heads around it also.
I meet with my neurologist again this week when he will share more details about next steps. I have promised these kids that I will keep them updated if they keep me updated about their lives: sports, school, hobbies and anything that they want to share.
Yes, I have a very good family

 

[Silver Oak]

Hi Kevin, Eric, Nikki and others,
Merry Christmas! I'm looking forward to a New Year with hope As there were just rumors of some very positive ALS treatments in Japan, plus the new funding from our government.
my speech is continuing to decline and I'm curious to know which "speech banking" scheme has worked well?
Thank you all for your comments and feedback.

 

[lisa g]

Silver Oak, contact the Gleason foundation for voice banking. They will set you up with the equipment and set up Zoom meetings with a speech therapist to walk you through the process.

 

[rnewton60]

I was diagnosed on 11/01/19 with Bulbar onset ALS. I am currently unable to eat or drink anything by mouth and Speech is impossible. I am still mobile but losing some mobility on my left side. I still live by myself and find ways to do everything for myself still. Hello to all of you and thanks for sharing.

 

[Statius@]

Thought I would check in though little to report. Had a nice Christmas dinner with daughter and her wife--They made a delicious beef Wellington and a gorgeous and tasty Pavlova for dessert. I am going to the ALS Clinic at the Tucson VA in January, which they've started since last year. Rather than having the specialists come in one by one they have everyone in the same room at once. I can see some advantages to that method, both for me and the staff. Unlike many I find the clinics helpful all in all. Tucson is having a cold and rainy spell, but no snow except in the surrounding mountains. Wishing all a happy, covid-free new year.

Ed

 

[lisatsmith13]

Still here and able to speak and eat, but I broke my ankle before Christmas so I am pretty much wheelchair bound for now. I will see the Orthopedic on January 6th and hope I have good news. It is frustrating to suddenly be so dependent on my husband for everything.

 

[KevinM]

Hi all. I’m so sorry you broke your ankle, and especially right around the holidays.

Ed, it sounds like you had a really nice family Xmas dinner. We had the same with our daughter, but as my recent post about omicron and rapid testing, we are nervously waiting to see if my wife and/or I caught Covid. A stressful time, but pretty much par for the course recently, it seems.

Other than that I’m still hanging in there and still getting around okay.

 

[Nikki J]

A broken ankle is challenging even without ALS. So sorry.

things here are ok. Fairly cold but minimal snow so far. Long way to go of course and we haven’t reached our peak snow season.

I think I am going back into hibernation in an attempt to avoid covid - particularly as our health care system is very overloaded and understaffed right now.

I am extremely grateful to live in the computer age and had a big family Christmas gathering- on Zoom.even without covid we are too geographically scattered to all get together in person

 

[beauty4everyone]

I send Kind Thoughts to you all.

Lisa, I’m so sorry about your accident! May the broken bone(s) heal quickly without any problems! Things are difficult enough without additional challenges. Hopefully, it isn't painful.

Due to my surgeons mistakes, I’ll have the surgery for my feeding tube redone, (NOT by her), in January via Radiology using a fluoroscope. I’m not angry , just disappointed. However, what is done, is done. The new surgery will go perfectly . That’s what “Hope” is about.

Christmas was quiet at home. My room was decorated with lights, etc. We live-streamed church and had lunch together. It was a lovely day.

The New Year will soon be here. May it be one that brings you all good things. B.

 

[wmilo]

I don't feel "ready" for the new year, but here it comes, ready or not!

Good visit with DS/DiL and grandchildren. Loved seeing them and was ready for a break when the visit was over.

Best wishes to all for a better year, whatever that means to you.