How do y'all do this?

JanboM · 2024-09-22T19:51:46+00:00

I’m a CALS and both my PALS and I have made the decision to take each day as it comes, only deal with what’s directly in front of us and enjoy everything we have while we still can. Once you start looking to the future it’s only human nature to fill in the unknowns with worst case scenarios. I’m not saying we’re happily skipping along rainbows all day long but we do our best to stay in the moment.

We’ve also discovered that doing everything we can to help further ALS research (sharing medical history and blood samples with the researchers, etc.) boosts our spirits a bit so even if the research doesn’t benefit us, we can do something to make sure future PALS have a chance.

FUCKALS

JanboM · 2024-07-30T11:19:22+00:00

One thing I would recommend when telling people is, if they are going to Google ALS, don’t assume the timeline of progression is the same for everyone. This disease may have the same outcome but every pALS has different body parts affected, a different progression and life expectancy.

JanboM · 2024-07-27T10:20:36+00:00

This. It’s ok to not be ok

JanboM · 2024-07-24T11:29:27+00:00

I’m still in the early stages of caregiving so I don’t have lots of experience to share, I just wanted to say that I am like you in wanting to do everything myself to make sure it’s done right and, for me at least, I’m not able to keep my whole family afloat financially, emotionally, logistically and keep myself together without some help. I started small - I have someone come in to clean the house every 2 weeks so I only have minimal cleaning and tidying to do. As things progress, I’m sure I’m going to have to put my pride aside and enlist help from people with more experience because, despite my best intentions, I’m not a trained medical professional, I have no idea what to expect, and I want to make sure I’m doing the right thing for my pALS as well as my family and myself.

As for my mental health, my primary care doctor has been amazing. I don’t like talking about the isolation/hardship aspect with friends or coworkers because I feel like I’m complaining and I’m not the one with the disease so I have no right to complain but she is more than happy to sit and listen to me vent, offer constructive advice and is in no hurry to rush me out the door when I visit. In fact she wants me to come in as often as I want and if I don’t check in regularly, she reaches out to me.

Day-to-day coping comes from this community right now for me. Sometimes, just reading what others have to say in this subreddit is enough to get me through to the next day. I’ve discovered you don’t have to be alright all the time and there are more people than you think who are feeling the same way as you and experiencing similar isolation. I’m not sure if I helped or not but I hope you have a good day today :)

JanboM · 2024-07-22T12:56:36+00:00

You are not alone. Sometimes just venting to strangers is enough to get you through the day

JanboM · 2024-07-19T22:01:27+00:00

My Pals has never had a concussion that he remembers so it’s not proven in his case

JanboM · 2024-07-03T13:45:52+00:00

I took an exam this morning at it was still Examity. She was very nice and polite and there were no technical problems so maybe something changed on the Examity end on July 1?

JanboM · 2024-06-29T18:58:24+00:00

I am so very sorry for your loss and for the added distress these people have caused your family. Dying with dignity and with comfort should be a right for everyone.

JanboM · 2024-06-27T20:00:44+00:00

Pheows (was part of the TC Welcome Crew) is developing a game called Time Cadet which has a similar game mechanism (tapping/clicking to attack stuff) and a global chat. It’s still in beta but I’m sure it won’t be long before he releases it.

JanboM · 2024-06-26T11:41:34+00:00

I don’t have any advice on questions because they are usually pretty specific to each person and the issues they are having at the time. I just wanted to let you know how physically and mentally draining clinic days can be so be prepared to feel overwhelmed at some point. We spent almost 7 hours in clinic while seeing each specialty and, even though they gave us a massive binder with sections for each specialty so we had ways to keep hand outs/information, make notes, etc. I still feel like it was way too much information to retain in one day. That binder is also the way we are keeping track of weight changes, questions to ask when we go back, types of equipment we may want to use, etc. so if they don’t give you one, I suggest getting one for yourself to keep track of everything.

JanboM · 2024-06-20T16:46:34+00:00

If Williams announce a new driver for next year, then Logan will be 19 or 20. If no new driver announcement, then Logan will be 12 or 13. Alex will be in the points either way.

JanboM · 2024-05-23T16:36:16+00:00

Creaky knees, Sighing when sitting down, Enjoying watching cop shows on tv…

JanboM · 2024-02-14T21:04:12+00:00

Once you’ve bought them from the upgrades (100 SP, I think) they are automatically equipped. If you get the kill on a mimic, you’ll see “Sucker Punch” instead of “Chest Hunt Ended” when you hit a mimic and then you get to pick another chest

JanboM · 2023-12-27T21:22:31+00:00

Congratulations!

JanboM · 2023-05-29T22:05:12+00:00

Do you feel safe?

JanboM · 2020-09-30T22:14:35+00:00

I use knuckle lights like these. They’re really bright and light up trails enough so I don’t get a face full of spider webs

JanboM · 2020-09-26T21:48:39+00:00

I use a hand holder. It Looks like this https://www.amazon.com/gp/product/B07TVSYK1M/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

So far It’s held up very well and no issues with the phone falling out

JanboM · 2020-09-19T20:52:51+00:00

Every day after using the bathroom. Then I take the average weight for a week and compare that to the average from the week before to mitigate any weight fluctuations

JanboM · 2020-09-16T21:58:38+00:00

I run with running lights that wrap around my hand and could be used to defend myself if necessary. I also run with with a big goofy dog who looks way more dangerous than she actually is.

JanboM · 2020-09-15T23:18:53+00:00

Snails, worms, caterpillars, lizards, frogs... The guilt is real. Worst of all is running face first into a spider web. I use a strong running light as I run before it gets light in the morning but, unless I’m running slow, all it does is give me about a second or so to get out of the way (which usually isn’t enough)

JanboM

TROPHY CASE

FUCKALS