CALS Roll Call Continued

Hi , still here and keeping busy with house building and having lots of visitors. We hope to go to the movies tomorrow and go out for lunch afterwards for a early wedding anniversary( next Tuesday). We have family staying with us over the weekend and thru to our Anniversary so we will celebrate early instead. I made a batch of apricot jam today which means we now have 10 jars of Jam and have just finished baking two banana cakes. Warm banana cake with butter..mmmmmmm.
Love Gem

Ok Thursday evening here, I'm getting to be a bad girl!

Cleaning out my clothes has been oddly cathartic. Even though they were not connected to Chris, there has been something amazing about that method that has me excited to get through cleaning the whole house by category as it includes a way of celebrating everything as you declutter.

The few days before I started I was getting a bit weepy again and feeling the approach of the 2 years without Chris. That has settled, so I better keep at it!

@gooseberry - you are always high in my thoughts and it's lovely to see you here encouraging xxx

@staying strong - yep don't worry, just jump in anywhere, or make a new thread, you will find it feels like home before you know it!

@Anna - thanks for the laugh, I could see that meal and the memories of love are beautiful I hope the weather turns soon - I'm loving our daylight savings crap is over, but it's still quite humid in the afternoons here, gotta cool soon!

@Steph - get all you can done to your teeth, good move, you are gunna need em I'm thinking

@Janis - I hope he really gets into practising with that technology now so he is comfortable with it quickly!

@ smg0012 - Stephanie thank you for reaching out, I hope you can find peace soon, it's a tough road on the other side xxx

@Deb - of course you are tired, well that's an understatement. This thread is great for those who can't post much, at least a quick check in is great to see

@Gem - I can't wait to hear that house is done and you have some photos. What a huge job, but what a wonderful project too xxx I haven't baked a banana cake in so long! When my kids were little I always had to make 2 at once because we would devour one hot, then we had one for school lunches next day. The jam sounds wonderful too - I love home cooking, just can't get enthused for one ...

Hello all.
I opened this site on Wednesday but its taken till now (Thurs) to post. Sorry .
I love reading all your posts. It makes me feel that I'm not so alone. My family are wonderful, but live far away. There is only so much you can explain over the phone! Locally we have such great support with our community really getting behind us and fundraising for MND , but I still feel the need for others who r experiencing similar challenges. I had a nice day today, my pal however is struggling with his breathing.
So tired.......

On the train and headed to New York City for a few days. Darcey is having a big pajama party with friends and my daughter during my absence. Tomorrow night, my son and I will see David Gilmour at the Madison Square Garden. This will be the longest separation from Darcey since 2013...

Try to relax and enjoy it Jim

oh oh oh Jim, the big concert, this is so exciting!!!

I bet Darcey is wicked with her girlfriends

Have a ball!

Have fun Jim! Make sure to take a bunch of pics for Darcey and us.

Just a we are holding on, my honey has blood clots in his leg now, at least we know what is causing so much pain and have hope that it will desolve with time and meds.

Checking in. Low key here in MT helped my PALS with the boat and then we took it out got it wet. We dropped in a couple of lines, no fish but that is alright.

Checking in: Our HISA grant came through and last Saturday they came and put a 36" door on the bathroom which has helped so much. Along with the lift seat on the toilet we are making it, one day at a time. I purchased a lift recliner chair for him also, and that has helped. Just bracing for the next catastrophe. And so it goes...

Happy Wednesday all!!

Checking in. Long day at work so keeping it short tonight. Just want to wish you all a peaceful week and let you know you are all in my thoughts.

Hello all, I've been having some bad days and get some comfort reading these posts. Or at least misery loves company, right? So I'm going to try and vent here if you all don't mind. Journaling is fine, but occasional feedback is better. Tomorrow morning my husband gets his feeding tube. I think this week leading up to that procedure has made us both sad. That and some bowel problems for him that have led to two large poopy accidents. Is that TMI? Those always make him sad knowing how much work that makes for me. The feeding tube is proactive. He can still eat, although with some difficulty. Chewing and swallowing is getting harder for him. I have to feed him, (his arms and hands were the first to go), and we have gotten to smaller bites and longer dinner times. We are in our 7th month since diagnosis, progression has been very quick for him. This time last year we were walking 4 miles a day, now he cannot stand or walk or even in his words "scratch his own itches". Sometimes it is overwhelming. His pleasures consist of being able to eat whatever he wants and drink a beer in the evening and now that is getting difficult and getting this feeding tube is like a slap in the face. He knows he doesn't have to use it yet but it's a reminder of the inevitable. He's been sleeping late this week but it's time for me to wake him up now and we'll see if this day is any different from yesterday. How about you guys? How do you deal? At any rate, I pray for us all. Please God, helps us get through this day, please bring us a miracle or at least comfort us and help us to find some joy amidst this pain. God, bless everyone who reads this, Amen.

Checking in a bit late. No aid today, so we had a leisurly morning in the shower and dressing--the hours it takes are so much more pleasant if we are not in a hurry to get somewhere; we can treat it as time together instead of a chore to get through.

Jim, waiting to hear about the concert!

Nealbob--blood clots are so frightening. You are fortunate to have found them in time for treatment and I do hope that they dissolve quickly for you.

Katie--my honey is hoping to get into the boat this year by way of a pool lift on the dock. It'll be another adventure....

Michelle, congrats on the grant! Isn't it amazing the things we take for granted until we can't access them anymore (at least not easily)? Staying ahead of this monster is a full-time task, just do what you can and then try to breath and enjoy the moments that you can. Have you done any sewing lately? I'm actually working on a baby quilt for the expected grandson. It's taken over two years for me to get back to the sewing room...

Adconley--you are dealing with a swift progression. Wow. Please do keep sharing, because feedback IS cathartic. No such thing as TMI here--I often say that my life is full of poop and pee; in many ways it's like having a baby in the house again. Hubby as even become very open about those struggles on Facebook and one of our kids threatened to change her relationship as his daughter (jokingly). I understand completely about the eating issue. It is also my husband's greatest pleasure. He wears me out going out to eat because, as he says, he won't go out when I have to feed him, and that day is getting closer. It now often takes two hands to lift his drink and get food to his mouth. Stress is building again, and I'm sure it's about the arms (legs are are long gone). I count myself fortuante that my kids are grown and my sister is caring for mom, so I try to see caring for him as time spent with him--as much as I can while I can. Of course, acceptance is a continual processs; everytime I find acceptance there's something else around the corner to accept...

Good to hear from you, Deb and T. There is so much exhaustion going around that I'm glad to at least see you putting your hand up.

Becky
Queen of Everything

Something they dont often tell pals but bladder and bowel control can be part of als.Since you learn to control the muscles at potty training, pals can lose that control.