CALS Roll Call Continued

First Wednesday checking in...

Dad has been fine. He got an electric bike for himself and has been pedaling well. He is also enjoying physical therapy. Gait is getting worse little by little, the process speeding up over a very cold winter -is it normal that it gets worse at night and is better in the morning? Other parts of his body are still working fine -left hand is clumsy but stable. Unlikely for an ALS patient, he seems to have more and more appetite and has been gaining weight, so those are good news.

We went for a little trip with the family these past few days. We went to the north of Spain, the Basque country. It was the first time we used the wheelchair on a trip (dad still walks, but we use it for long distances). It was nice and he is confronting the disease with great humor, for now. We ate great food, visited the Guggenheim Museum, and enjoyed sightseeing in some of the Game of Thrones locations (Dad is a fan).

Everything is good, as long as one lowers the expectations enough. How is everyone doing?

(By the way, I am not his full-time CALS. Can I still post here? I am still learning to navigate the forum, so I apologize in advance. I mostly live far away but have spent significant periods of time at home since he was diagnosed. Mum is the main caregiver).
 
Yup,, hadn't had a cold in two years, didn't dare but the week after Ron passed I got one.. defences down and maybe our body's way of telling us it needs to rest. And now 2.5 months later I am fighting a sore throat. Take care .
 
Ninja, Eldavia, immune system seems to go into mourning, too, if it's not just "catching up". I had three nasty colds this season. Better now than when my PALS most needed me.

I haven't been around here all that much as I started a new and very promising job this week. Good to learn something new and get to meet all the friendly folks there.

Welcome to all the new names here! Just post here, don't overthink the caregiver aspect. There's someone with ALS, you care for him dearly, it's a match.

Wishing all of you busy CALS a s***-ton of energy!
 
Wish - congrats on the new job!

Hang in there everyone.
 
Welcome Emanol! It's so good to hear of PALS and CALS enjoying life and travel together. My parents used to go south for part of the winter, but that's not possible anymore. I would love to see Spain some day.

Wish, I'm so excited for your new job! They're lucky to have you.
 
Congratulations on the new job, Wish!

My brother, who is retired and livies in another state that is driveable, has tried to visit every month or so for the last year or two. He is older than me and his health is not great, so his visits will be less frequent going forward, He has been great moral support and I will miss his visits, but it would break my heart even more than it’s already broken if something happens to him, so I told him he needs to see his doctor and see if these trips are too much for him. He agreed with me,

Being a caregiver is very lonely.
 
Congrats on the new job Wish! So nice to have something to focus on!

Next weekend, I am headed to Mexico with my DSIL who lost her husband March '18. My first vacation since Hawaii with Cliff in June '16. I am super excited about it as is my DSIL.
 
ARCG, best wishes for your brother's health.

Have a great trip, sooner!

Laurie, we did make the change to Kate Farms formula. He's still had us stop the tube sometimes even at the lowest setting, but I do think it's working better than anything else has. Thank you for the suggestion.

Dad was having bad nights. I sat and watched while he had an oxygen monitor on his finger. His O2 went down into the 60's both with and without his bipap on. He was having apnea episodes where he would stop breathing. He almost seemed to recover more quickly without the mask. (I think because he was also fighting the machine when he would startle.). We had respiratory out. She changed the settings so the machine does more of the work now. She also turned on the apnea setting. I think it was key to be able to sit and watch an oxygen sensor so I could describe exactly what was happening. It seems better now. He can relax and let the machine do more of the work for him.

We are planning to meet with hospice for the first time tomorrow.
 
Checking in - we had our 6-month checkup with the neurologist yesterday. He said he definitely sees progression in my husband; his right hand and left foot are weaker. My PALS has lost 20 lbs in the last 6 months despite my trying to feed him. So he has advised us that he wants us to have our first clinic visit next month. We are to do a pulmonary test and possibly start him on Bipap. I came home and had a little cry...have been telling myself that his progression is slow and we wouldn't reach this point for a while. I have to think about selling our house with all these levels and downsizing.

V
 
@ debwilson77 great to see you Deb - a good attitude goes a long way doesn't it!

@ vltsra - every bit taken is another grief for sure. I hope you can get bipap going quickly now as even though it's progression you didn't want, you can keep a quality of life going better if you address the breathing.
 
Present, sending you lots of energy to make up for lost but well spent sleep. Improving the bipap settings thanks to your observations is great. Much strength!

V, sounds like a harsh reality update. I'm sure it came early enough for you to do great and plan ahead like a good CALS. Finding a house or apartment without too many obstacles will probably make life so much easier. We had the great luck to find an accessible apartment and the wider doorframes and hallways made it possible for my PALS to get around in his huge electric wheelchair without taking chunks out of the wall.
Good thoughts to you!
 
Keeping everyone in my thoughts and prayers.

Hugs
 
Hi all,

Checking in. We - that is mostly my partner - had a bit of a rough time with shingles in December and a broken arm due to a fall in January. As if ALS by itself was not enough... At the same time his ALS is progressing to a degree that drs/friends are advising to involve hospice sooner rather than later. We have not done so yet.

The good news is that my boss told me to work from home. Could it get any better?

I'll post my question about the tobii dynavox system in a different thread...

Glad to be back to read all the posts.
Ina
 
Good to hear from you Ina.

I hope that working from home will help you both, give you more time together and help prevent further falls.
 
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