CALS Roll Call Continued

[affected]

Sorry to welcome you here Dawno.
What medication was your husband put on?
PLS usually takes a number of years to diagnose as it does not show on the EMG and is very slow to progress.
I'm glad you found this place for support.

 

[Mary2]

Dawno, Sorry you are here but welcome.

Sorry if you read some posts where I was tired. As Jim indicated as the disease progresses, there can be a struggle to find a balance between caretaking and companionship in the relationship. I love having companionship time with my PALS (husband) and have been doing the (CALS) caretaking tasks several years now, so I do get tired.

My PALS is on Riluzole and we feel this has been helpful. He was limb onset but his voice is deteriorating now and this is why we are starting work with the eye gaze.

We are using the Tobii Dynovox which Emory suggested. There are other devices, but we did not research them. Many people with ALS have had success using speech assistive technology. It is a wonderful thing and pretty straightforward. Do not let my difficulties with my PALS discourage you! My PALS could be stubborn prior to having ALS.

 

[Mary2]

Well I asked my son to read Jim's post and look at this forum and I think he saw that he could be of some help with getting us use to the eye gaze. So he came home and worked with PALS in several sessions throughout the day and both of them seemed pleased by what was accomplished. So it has been a good day!

 

[affected]

That is the best thing I have read online all day Mary!

 

[Mana]

Yay for good sons! Mine came over to dig holes in our garden so my husband could put out new plants, which cheered him up.

 

[vltsra]

Mary hoping your PALS will feel more comfortable using the tablet now. It was huge for us. My PALS could text his friends and watch videos, take photos of visitors, and participate in conversations. Best of all we could talk to each other, which I miss dearly.

 

[Mary2]

Going along pretty well here. I have PALS in bed around 5 pm most days and lights out at 8 pm. I can't believe I ever had him up until 8pm with lights out at 10pm. That isn't even good for his skin. I am getting older because I can't believe I ever did it. And the Braves are done for the season which makes it easier to have lights out! I have more help now and will stay at this level of help for 9 months or so and then I will have to re-evaluate how to proceed. The weather is better as well and I have gotten several walks in!

 

[affected]

Oh Mary, that is just wonderful. Earlier nights and some walks - I hope it makes the difference in how you feel you are coping.
Well done!

 

[MJT]

Mary, your comment about the Braves cracked me up! I'm glad you had a good day.

 

[Mary2]

Going along okay for now. I had an active day outside of the house and was very tired doing PAL's evening routine. I ended up napping for several hours and doing his routine after 9pm. That's okay, he napped well during this time. We finished the audio book The Rose Code by Kate Quinn and have started another book by her: The Huntress. These are historical fiction, but have a good plot. PAL's has gotten quite proficient with the eye gaze and uses it for hours each day. He just finished listening to The Three Body Problem which is going to be made into a movie.
Outside the house, I take walks on a local college campus that has a nice pond and I go to Starbucks for coffee (which I really can't afford to be doing)! On week ends we watch the GA football game. I am told we are number 1 right this minute. So everything is okay for now.

 

[affected]

Mary it is so lovely to see you have both really come forwards a few steps in the last couple of weeks!
It is wonderful that he is becoming proficient with the eye gaze, sounds like stepping back and letting your son step up has been a blessing for you all.

 

[MJT]

I find myself on this forum every day now. Friday, Jeff choked for the first time. On spinach quiche. (I now know mixed textures like a dry crust and creamy filling can be a trigger.) I tried to do the Heimlich maneuver but couldn't reach around his wheelchair. I could see his face in a reflection in the window. His eyes were wide and terrified. My heart still breaks that he experienced that. For every scenario for which we prepare, there are 10 we didn't anticipate. Jeff's progression is fast. I wonder if our clinic will order hospice during our visit in December. His FVC seems to have drastically declined. I'm tired and numb and have gained over 40 pounds. I'm also cheerful and strong. Experiencing ALS is surreal. My husband is a good man. Kind. The world needs him. Thanks for reading this non-sequitur.

 

[ThatsAmore]

Hi, MJT this is my first post…although I too am here often these days. My husband is bulbar onset and we had to perform the Heimlich a couple times before he got his PEG in the spring, It is scary And I’m sorry you had to experience it. My husband has clear signs of bvFTD - and I have been reflecting on how tough it is to look ahead and plan when he does not have the ability or willingness to do the same. Such an emotional roller coaster. I really appreciate those who share their real world situations here.

 

[Mary2]

MJT......So Scary that you experienced the choking episode with your husband. Tired and numb and cheerful and strong. Yes those words describe how I feel..sometimes all within the same day. Your husband is a good man and showing great courage in the face of ALS. As are you a good woman!

ThatsAmore. I am sorry to have to welcome you to the Forum. The Forum has been a great source of educational and emotional support for me. ALS is hard enough...then adding in FTD is so much more. My thoughts are with you and your husband.

 

[MJT]

Mary- thank you for your sweet words. My husband has limb onset and no speech or other mouth problems, so choking wasn't on our radar. It sure is now! How old is your husband? (If you want to share.)

ThatsAmore- bvFTD is heart-wrenching. I can't imagine your pain, losing him in that way. My hope for you is that there are glimpses of his old self, and he is unaware of his condition.

So grateful to have you both here. (And Tomswife)