CAREGIVER ROLL CALL: How's everybody doing?

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LornaDoone

Distinguished member
Joined
Apr 16, 2010
Messages
215
Reason
Loved one DX
Diagnosis
09/2007
Country
CA
State
BC
City
Lower Mainland
I wanted to start a thread and see how everybody is doing?

Check in and let everybody know what's going on?

ALS related.......

Off topic........

it's all good.

What's on your mind?
 
I'll start.

Things are going good for a change. My PALS progression is zipping right along now. But we are all managing. We have had a new diagnosis in the family over the last year. But we are doing well. The ALS part of my life is actually very well organized. Things are under control.

My problem is the other part of my life. My kids and marriage need a bit more of me. I have a super hard time balancing that. But am finally in therapy again and getting lots of help around the house. Has totally helped the stress level.

Going for coffee with an old friend this afternoon. Totally psyched about that!

Hope others are having a good day.

*raises her mug in cheer*
 
Just checking in here. We had company for the long weekend and enjoyed it immensely. We are still coping on our own although it seems like ages since either of us slept more then 4 hours at a time. Ric has become weaker and I notice his neck and face are a lot slimmer then two weeks ago. Hope all of you are having more good days then bad. Hugs to all
Abbi
 
Hi. I haven't been on in quite awhile. Been so busy. Mom is doing well, although her hands are now losing strength. I am back to the gym and working out full time. Made a promise to myself to take care ofme this year as I will be 50 in July and want to be strong for Mom. I have started a health care business centered around care givers. Helping them care for themselves. I am working back at the health food stores on the weekends. My brother in law has offered to hep out with Mom when he can...so far he hasn't but I am praying that he wasn't just talking. I am giving a talk to caregivers of PALS in May for MDA in NYC. Very nervous about this but excited also. Honored that they asked me. Thanks for the thread, Lorna. Hope everyone is well.
 
Birthday tomorrow! It's also Sadiemae's birthday. She will be 3 and I will be 53. Going in today for a cut and color. Thinking of a Sharon Stone type pixie! My old hairdresser moved away, so hoping this new one is up to the job. She cut Les's hair a couple weeks ago, and he liked it, so, wish me luck! HUGS Lori
http://www.short-hair-styles-magazine.com/sharon-stone-short-hair-04.html
 
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Checking in... Last weekend we went on a little get-a-way to the mountains. It was great to get away with my husband and the kids without the distractions of being and working at home. Hubby was very happy to read his kindle, work on the computer and watch the kids ski from the lodge. It was the kids first time skiing and I haven't skied in 20 years. We all had a great time and it was great to be together doing something new and different for a change. Unfortunately my husband has been getting weaker and I have noticed a big difference in his speech. Fortunately he hasn't had those nasty muscle spasms in a few weeks, but he did have a quick one in his throat yesterday. Has anyone ever heard/seen of this? It lasted less than a minute and he probably wouldn't have mentioned it to me except that I happen to be looking at him when it happened.
 
things have calmed down as far as adjusting to the diagnosed it will be three months monday the seventh. its been a fast frogression I'm nolonger walking have peg and speech is almost gone one hand alredy gone and otherone soon to fallow. Dispite all the lose. im enjoying the fredom to spend all the time i want with my family. best of all i dont have to do dishes lol . lots of love to all
 
Lori you need to post us a picture, I remember having a pixie when I was younger, Oh heck showing my age...lol I will be 52 in two weeks. Laura I am sure your talk will turn out fine. kkaye is your husband bulbar?Hey Abbi..have not heard from you in awhile.
 
It's "Elfin," not "Pixie!" LOL Get with it old lady!

Life sucks and then you die. That is where I'm at.
 
We are finally winding up construction on the house, and I should have my husband back in the master bedroom by the end of the weekend! We completely gutted the master bath to make it accessible, replaced the bedroom's picture window with an 8 ft door/ windows that lead out to the new patio extention. We widened four interior doors and the door from the den to the original patio. My husband loves to look out into the backyard, so he is going to really enjoy the added view this spring. I'm going to enjoy the added ease in his transportation and care. We have really been having a rough time lately. His speech is almost impossible for me to understand, and he is very resistant to using the dynavox. We have finally started using the lift more. I am finding it a bit difficult in some ways. How do you get shorts or sweats on someone that has no use of his hands, cannot roll and cannot stand?

Laura, I sure wish you were down here! I'm turning 50 in May, and I need to get into shape! Happy Birthday Lori (and Sadiemae). CJ - I'm with you. That's about where I am, too.
 
CJ I feel old...lol
 
How am I today? Im completely burnt out. sick of it all. tired. crabby. really hungry and just blah.
I say we all organize a day that we all run away from real life and meet up for... well whatever!
 
Checking in.... Confused, tired, scared, and broken hearted. We're not getting much sleep these days. Eric is now in a hospital bed half the night and a reclining office chair the other half of the night. His O2 went down to 78 while he was sleeping, so he is now on oxygen along with his bipap at night. He's also on the bipap 90% of the day because his lung capacity is 22% now. We're planning a get away weekend for our 28th anniversary... just scared it will be our last. I cut back my hours to 32/week (I work from home), which feels like a vacation. LOL Even though I'm exhausted, I would rather be this busy for the rest of my life than to be without him.

Thanks for starting this thread.

CJ - Hang in there girl!
 
I'm with you Liz, come pick me up. We will be like Thelma and Louise. Have some good old fun!
 
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