CALS Roll Call Continued

Late check in again. I have spent most of the evening catching up on everyone. So many losses and so much for everyone to deal with. Sooner Wife, I am so glad you had such a wonderful trip. I have so many good memories of our trip there several years ago.

I have had a very busy couple of weeks. My granddaughter and Steve's grandson came to stay over the 4th holidays and we did so much together. My son and his girlfriend joined us for the 4th. Steve was not feeling well but was able to spend some time visiting with them.

Last Thursday I headed to the hill country for a five day retreat with 10 friends. It was so nice and relaxing. The rental was huge with a private swimming pool, was secluded and beautiful. We played games, cooked, ate and of course drank. I came home today with my spirit renewed. I am hoping to keep the feeling for a little while. Steve did great while I was gone and his brother made sure he was well cared for. Back to work and the real world tomorrow.

My thoughts and wishes are with all of you this week and I hope its a good week for all.

So glad you were able to enjoy some time away scaredwifetx! Sounds like lots of fun. I hope you were able to escape the monster for at least a bit! We missed you!

Checking in...your getaway sounds wonderful, scaredwife, it's important to have some time out for ourselves. My college roommate is on her way out for a visit today, can't wait to see her. She's been very supportive. Wishing everyone a good week.

V

Just checking in. Hubby keeps pushing himself, but he is starting see his limitations.
We hope to travel in our RV later this year. While he is still quite mobile.
I really appreciate the forum. Thanks everyone for posting.

Just checking in. We took the family to a lake house in Tenn. My wife's mobility is pretty much gone so I knew it would be tough to walk her down steps and a path to the dock. I built a brace to carry wifie to down to the pontoon. One guy in front, one guy in back, wife in sling in between hanging from the frame/brace on our shoulders. I didn't think she would do it but she gave it a shot (nothing is going to stop us from a boat ride, hot sun, and some cold drinks). It wasn't easy but we did it and used it every day. Had a lot of help from strong family. The trip really helped the spirits...

Hi there. Just checking in. Love reading about all of your outings & adventures. We haven't been outside for nearly 2 weeks. It's winter here and it's been too wet. Our journey is fast, so explore,visit and laugh heaps...it gives you plenty to look back on when you are not so mobile. Cheers to all.

Crazy two weeks. M has been having terrible pain and an acute change in spasticity of his legs. We have been making weekly trips to Boston. M is discouraged and withdrawing from a lot of the activities he used to do. To get out of bed I have to bend his knees and push his feet bak. His stiffness is impressive. He is back to Plankman. Though his Baclofen pump appears to be in the right place and is functioning, there is concern for the suddenness that something is not right. In the midst of this his dad who has been in a nursing home is well enough to go back to assisted living. We were not happy with the medical part of where he was. Last weekend I packed all his things and moved them to a new place. He moved in on Monday and Tuesday M and I were in Boston for testing. I feel like I am on a hamster wheel. Hopefully I am over the hump.
Too many new names: But welcome and hope we can share our journeys.
Anna

I mistakenly posted this on the incorrect thread earlier today. Apologies for my goof up. Brain fog.


Checking in to say we're still here. I try to keep up with all of the posts. So many amazing CALS and PALS with stories of challenges and loss interspersed with triumph and moments of grace.

My PALS has completely lost the use of his right arm and hand and his left arm and hand are getting weaker. He still can walk, but not easily and not far.

Our new van has been ordered and should arrive in a couple weeks. It will have a spinner knob so hopefully Chris will be able to drive for a while. We could have had a van a couple weeks ago but Chris wanted a specific color because he knew I liked it. How incredibly silly and selfish of me to even say anything. I regret that he isn't driving a safe and adapted vehicle right now. Live and learn.

Meanwhile I have learned how to change a turn signal switch, how to put together a walk-behind string trimmer, and I've had practice (twice) changing tires. (I seem able to find every stray nail when driving.)

Our contractor thinks he can begin construction on our remodel this month, so I figure he might actually be able to start in Sept. or Oct.

Biggest lesson learned lately: How to ask for and receive help.

Peace and love to all,
Kathleen
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Checking in
So many CALS in the forum at the moment, I don't know how I would have coped without my family here.

Start a thread for any question or issue you like, nothing is too small to ask about.

Over the other side of the hump we roll again xxx

Almost forgot it was Wednesday... Checking in. Not much going on except work. I'm glad you all are getting out and enjoying when you can. We have been to the dr this week for his rash . Prescription cream seems to be helping. Also asked some ventilator questions while at the dr. Hopefully we can get the living will completed so I can quit thinking about it.

Here, of course. Oddly Brian's bad hand is stronger. i'm sure it's just the drug - or ALS can do that I hear temporarily. He started the orthodics this week and those have been going okay. Riluzol is going okay too, he started a few days ago. He feels sickish for an hour after taking it but is then okay when he eats. We made reservations to rent a houseboat at the end of August for the weekend. We went out to breakfast before I went to work today just because. We are planning a date night dinner out Friday. Last weekend we had a fajita dinner cruise. Just out living while we can be together.

Lenore, I loved reading your post. It's nice to see that your PAL is making sure you have many memories to treasure. It's also great that he is feeling so good.

Checking in. Have not been on for awhile. Visit to pulmonologist yesterday. Numbers are down. March his FVC was 62% now he is at 44% they couldn't get an accurate test because he can't exhale for over 3 seconds. They have prescribed a hospital bed. He is still walking, talking with difficulty. Choking occasionally. Good to see so many of you doing alright too. Hugs to you all.

Hi all, just come home after a three day break at a patchwork retreat, our car is sicker than we thought and needs a new engine, so we will hire another car tomorrow for the weekend so we can travel to my sisters one year anniversary since she died and celebrate her life with her husband children and friends. We have made the move but I am still sorting thru boxes and trying to down size. Still trying to sort out Internet solutions as we have no copper or fibre to the node at the new house and will be relying on a new plan on our mobile phones. Life has been so very busy and I'm looking forward to things slowing down, love and hugs to you all.
Luv Gem

I am new to this forum. My husband of 33 years has been diagnosed with ALS Feb 2016. The neurologist thinks he's had it for 3 years. His condition has declined rapidly. He is using the cough assist and the Trilogy machine. He is bedridden and we use a hoyer lift to get to the motorized w/c. I am so sad, but it helps to read what others are going through and how they are coping. I hate ALS!!!