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

[TippiLeigh]

I love seeing the skiing videos! I've only tried downhill skiing once and I was terrible. (This was about 25 years ago and I never tried again LOL) But I would totally be up for the sled!

@EricInLA So neat that you have musically inclined kids. I have no musical talent LOL. But, I have to share a video of my brother Mark, who died from COVID last year. He was a great saxophone player!

 

[KimT]

Steve, I frequently watch your video just to lift my spirit. It works! That is living.

The pandemic gave me some depression and I'm no stranger to depression. My mother and all of her siblings had bi-polar disorder. With it came tremendous artistic talent, high intelligence, and other gifts. For her, living in a small village, it was hard. She toughed it out with no meds and no therapy.

I never felt depressed until my mid 40s. It hit me like a ton of bricks. I nearly lost my job but I discovered Remeron, which was fairly new back then, and it worked. Fortunately, the pool and sun helped me through the worst part of the pandemic. Right before Christmas, it hit me again and lasted for a couple of months. Nothing like I experienced in my 40s but still enough to make me want to lie in bed and watch TV from about 5pm on.

Anyway, we all have different coping skills. Do what works. Today, we're all alive so we might as well make the best of it.

I'm looking forward to attending Easter service on the beach. I hope the weather cooperates.

 

[KimT]

TL, I'm so very sorry you lost your brother to Covid. Thank you for sharing the video.

 

[blitzc]

You guys are amazing!

After reading all of our posts yesterday, my take a way is that we are a plethera of ALS functioning issues. Each of us from one day or week or month to the next deals with such a host of joys, sorrows, loss of control, difficulties, and emotional and psychological highs and lows. We are ALS in all of its "glory".

Jessie and Steve-LOVE the videos! I am living through your experiences.
Eric- congratulations to your son. My son (graduating in May from U of Akron) was a member of the marching band (Sousaphone) for 2 years. He had to stop due to the increasing demeand of engineering.
Dave- so glad you survived that ordeal. Why can't hospital personnel figure us out during a stay?
Lisa- unpack those boxes!!!! Bill cares for you and wants to help you so that you don't push yourself beyond your ability.
Kim-your strength and wisdom keeps me grounded when I want to sit in miserey. Thank you for being here for us all!!!

 

[KevinM]

Hi everyone. I know that Nikki wisely changed the roll call from Wednesday to anytime, but I’ve become so compulsive in my routines that I’m still a Wednesday guy.

I’ve had a bit of a rough week with my chronic GI issues flaring up, but it’s starting to slowly improve. I have to watch what I eat and drink much more closely these days, but it’s hard to change old habits.

I have a 64th birthday coming up, which I really wasn’t sure I would reach when first diagnosed. My wife and I (and loyal Sheltie) are planning a few days next week up in the North Carolina mountains to see the start of spring again. Sure hoping I don’t have too many emergency bathroom stops on the way!

A couple of other thoughts:

I’m worried about Statius, haven’t heard back from him since his kidney/urine production issues. Damn, I hope he’s okay.

Jessie, I’m thinking of you every day as you prepare for the use of the Hoyer. There has been such good advice, and I hope your caregivers can master the procedures.

I know how important this forum is for anxious people around the world who have read Dr. Google and want answers from the knowledgeable folks here. However, they constitute such a large majority of the posts that I do get weary reading about another 20 year old with an eyelid twitch that has become convinced they have MND. Oh well, health anxiety is very real, and I think the pandemic has played into this at certain levels.

Ok, enough. Please report in if you can. With affection, Kevin

 

[lisa g]

It's Wednesday, checking in. The weather has been gorgeous for the last week. My pool finally hit 80 degrees. I've had them deacess my port from my radicava infusions everyday so I could enjoy pool time.

Starting to get everything ready for our trek up north. We'll be staying through the first week of July. Hoping the weather up there stays mild.

I was told by Holy Cross and UA Miami that I'm officially over the hill to participate in up coming drug trials . They seem to think that with my swallowing issues that started in 2013 puts me over the 36 month onset diagnosis. Oh well I tried.

Getting ready for Easter making goodie baskets for the 2 younger grandchildren. With hubbys help we'll be hiding plastic eggs in the yard and let my grandson hunt for them.

Hoping everyone is staying safe and enjoying their week.

 

[Statius@]

Statius (Ed) here--I wasn't the one with kidney/urine problems, must've been someone else. Hope whoever is doing better.

I am getting a lot of tests for cirrhosis of the liver over the next few weeks. Showed up incidentally when they did cat scan last year for pulmonary embolism. Etiology unclear--I've never been a heavy drinker, so it seems unrelated to that. No symptoms, so it's hard to take seriously, tho I guess I should. I think ALS or heart problems will kill me first.

90's here in Tucson for a few days before dropping back to more reasonable temps. Everyone stay safe and enjoy Spring.

Ed

 

[wmilo]

First things first - Kevin, congratulations of your upcoming birthday. You made it!

Sorry about the GI flareup; and Ed, best wishes for your tests. At least it isn't symptomatic.

I agree that Jessie's Hoyer post was helpful. I'm not quite needing one yet, but it helps prepare (mentally) a little to read the discussion.

Overcast here today. I'm struggling with the feelings we have when we notice that we've lost strength, and are having more trouble with simple tasks. All kinds of negative thoughts. Thankfully, I don't stay down very long.

Lisa, it made me smile to think of you celebrating Easter with your grandchildren.

 

[KevinM]

Sorry Ed. I was thinking about Scotiaspirit. I’m worried that we haven’t heard since his issue last week.

Sure hope your tests come out okay. It’s always something it seems.

Bill, thanks on the upcoming birthday. Joy and sadness at the same time. I totally relate to losing strength and the dark thoughts. Sometimes it consumes me for a while. K

 

[nona]

Hi everyone.

The hoyer talk has been very helpful. I love this community we have. I'm sorry about your GI, Kevin. And Ed, your liver. Could it be med-related? We don't need these insults to injury.

After last weeks events (ski trip, vaccine, and three poops!), this week has been, sadly, uneventful all around. I've been trying to do a "work" every day, things I have to check off my list. I want to write letters to a long list of people but that seems daunting. So if I work on a little every day, I reward myself with Netflix or something.

Kevin, I have tried to find meaning in the struggles of the people with health anxiety. As difficult as this journey is for us, I can't imagine living with that level of mental anguish.

 

[Fusia]

Jessie - congrats on your "triple header" last week! And, I understand how thinking about doing "work" tasks is daunting, everything just seems to take me 10 or 20 times longer than it used to.

Congratulations, Kevin, on your upcoming birthday, but I'm sorry to hear that you and a few others are dealing with troublesome health issues.

I've been in a bit of a funk the last several days, not just because of this sh#@@y disease that I have, but mostly because it's so darn hard to depend on other people to do their jobs - it just seems that people (especially customer service agents) don't follow through on what they say they will do, don't call back, and don't know what they're talking about anyway. ARRGH!

Our weather is getting more spring like every day here in Montana, we will see mid 60s by this weekend - I'm looking forward to being able to go out for a "walk" in my PWC without needing anyone's help. I go to my ALS clinic tomorrow, hoping to get some advice on a different headrest for my PWC and get a loaner joystick since I've been waiting about eight weeks for the one the DME supposedly ordered (see complaint in previous paragraph).

Try to stay positive, everyone, and have a good week.

 

[KimT]

Kevin, Happy 64th! I can relate to digestive issues as I have both GERD and IBS. My gastro recommended a product that was really a game changer for me. It's OTC, I buy mine on Amazon, called IB Guard. All it contains is peppermint but it's in a capsule so it doesn't make the GERD worse. I wish I could get off the protein pump inhibiter that I've been on for over 20 years but, every time I try, the reflux is so bad it kicks my heart into arrhythmia and I'm afraid I'll aspirate.

I have a lot of empathy for the people with anxiety because I've suffered from anxiety, panic attacks and depression years ago. I tried so many types of therapy but it took a couple of meds to get it under control and I'm totally okay with that.

I was in the pool for seven days straight! The water never got below 85 and the air was anywhere from low 70s to low 80s with a nice ocean breeze. It's my happy place.

Last night I played cards with three other vaccinated ladies for the first time in over a year. We had fun but I experienced sensory overload from everyone talking, laughing, crying, and catching up. We're doing it again next Wednesday. They like coming to my place because it's big and Ace is here to entertain. I didn't realize how much I missed my friends until I spent time with them. I wasn't sure if I could still shuffle but I can. It was a new deck and one of the other ladies is legally blind, the other two are ten years older than I am so we all had times of dropping things.

Today, a cold front is coming through so my pool days will be over for a week but that should be the end of the cooler weather.

On a horror note, I found out through my cousin who is into ancestry and building our family tree that Donald Trump is my 4th cousin. Good grief, he posted it on Facebook and I nearly unfriended him. Why couldn't it have been Jimmy Carter? At first I thought it was a sick April Fool's joke but it's true. It's through Trump's mother.

 

[swalker]

Kevin, I will be celebrating my 64th birthday in a couple of months (hopefully, in Yellowstone). Like you, I did not expect to get close to that milestone when I was first diagnosed.

My wife and I have spent a couple of days doing a few things with the motorhome as we prepare for our trip to Yellowstone. It is amazing how long it takes me to do even simple things. Each time we visit it, we find new things that need to be taken care of. I think that is just part of owning a recreational vehicle!

The biggest remaining task for the motorhome is to install a 12 volt outlet near the bed so I can plug in my ventilator and run it off of the house batteries. We have located an appropriate circuit and accessible wiring on that circuit. Now, we just need to drill a 1 1/8" hole, install the outlet, and connect the wires. It seems like such a simple task, but I am not sure it is possible for me to do. I won't know until I try, so I will try (probably next week). If I fail, we will have to have the motorhome repair shop do the work. If I do it, I know it will be done right, so I am really hoping I can pull it off.

We have had typical spring weather here. Cold, cloudy, snowy, sunny, warm, and occasionally breezy.

Kim, they say you can pick your friends, but not your relatives.

Steve

 

[KevinM]

Thanks, everyone, for the birthday wishes. I’m still trying to sort out my feelings today. Happy I made it, but fearful I might not make another.

Kim, I’ve actually started back on IBGard last week, and along with a bland diet (and less beer), it seems to have helped. I didn’t see much benefit when I tried it last year, but it did seem to calm my gut this time around, so I’ll stick with it. And about that cousin of yours...

Knowing you, Steve, I’m confident you’ll find a way to wire the outlet, especially if your wife helps with some of the finer motor skill requirements. I was lucky to find an exceptional RV tech, and had total confidence in him when I had work done. Hopefully you can find someone similar.

Cant wait for your “Tales from Yellowstone!” Kevin

 

[lisa g]

Happy Birthday Kevin. I'm sure there will be many more.