CALS Roll Call Continued

[vltsra]

Still here. I have been feeling very tired and worn out lately, just trying to keep going. I don't want my PALS to go, but neither of us has much quality of life now. I will need to reach down into that inner strength to keep going.

V

 

[Mary2]

I will reach down there with you V. I am thinking about you and your PALS. Not much new here. Just going along. i found out yesterday or the day before that I wasn't hosting the rehearsal dinner (only about 10-12 people i think). My son and future DIL are going to do it. Probably just as well, though my brain is upset about it. I am very tearful about it. Maybe it is just the stress of everything. I didn't know parents of the Groom don't do the rehearsal dinners anymore. They still expect me there I think, and I think since I am not hosting, just getting PALS to the wedding would be enough. But I will try and go.

 

[Mary2]

I posted on a wedding website when I came to understand I wasn't hosting the rehearsal dinner. I said I was so disappointed and the cost of going (hiring someone to stay with PALS ...he doesn't want to go....and an extra night in the hotel, plus 40 minutes each way
to the venue so 40 minutes away from PAls.). Boy did I get knocked down and kicked around!!! Social media is tough!!!

 

[affected]

So sorry Mary - what should be the most exciting and beautiful time is something of a nightmare suddenly.

 

[rmt]

V, after so long, you must be so worn out. Sending hugs to you.

Mary, I'm sorry the wedding is becoming such a stressful challenge. I hope you can find a way to make things work for you.

Things are actually going pretty well for us right now (I really hope saying that doesn't jinx us!). We both increased the antidepressant dosage and it is helping a lot. I feel so much more in control of my emotions. And my husband is happier and more engaged. The entire feeling in the house is better.

We also figured out a dosage of gabapentin that helps his restless legs at night. For the first time in a year and a half, he is able to go to sleep and stay asleep all night (except bathroom trips). It is such a positive change in our quality of life. I'm hoping the gabapentin will keep working for him.

Life is so different than it used to be, but it feels sustainable again. I hope this feeling continues for a long time.

 

[Mary2]

RMT! I am glad to hear that the antidepressant is helpful! And your PALS is sleeping! Good news! V I looked and I see your PALS diagnosis was in 2015. You both have been handling this diagnosis awhile now! No wonder you are tired! I admire your strength!

 

[vltsra]

Thank you Mary and Robin. Mary perhaps you son understands the challenges you face and wanted to make it easier for you? I wouldn't worry about what people say on social media. No one there is in your situation.

Robin so glad your PALS is sleeping. That is huge. You sound much happier. I have had to hire nighttime help and move upstairs. I was supposed to get my new mattress today but the salesman called yesterday to tell me it has now been delayed.

We had a decent outing on Thursday. It has been more difficult for him to maneuver the chair to get into the van, but we did it and I took him to the Beyond Van Gogh exhibit. He was so happy to go. It did both of us a lot of good.

V

 

[Mary2]

V...I had friends who went to the Van Gogh exhibit when it was in Atlanta. They really enjoyed it! That is a benefit of San Diego..the weather must help you to be able to get out! PALS sits with his headphones on glued to the computer all day. To speak with him, I need to remove the head phones. So there is no casual chatter in the home anymore. I have to decide to stop doing chores and sit with him and talk with him. It is lonely. I guess at some point he will lose speech entirely. I watch the 4th and 5th set of the Australian Open and am reading a light romance novel, with an old hotel, cafe, book store, the ocean and a group of friends.

 

[rmt]

Mary, I know what you mean about the house being lonely. My husband hasn't been able to speak for almost 2 years. I miss the chatty banter so much! We would talk constantly from the minute he got home from work until we fell asleep. I did more of the actually talking but he was always so engaged. I've tried to keep talking with him but it must not be as fun for him now that he can't answer back very well (his expressive aphasia makes it a big challenge). He just doesn't seem all that interested anymore (though the antidepressant has helped with that a lot). It used to hurt my feelings and make me feel bad. But I know it is just this stupid disease and not something I can really fix.

I still talk to him and tell him what I'm thinking and doing, but not like before. It has taken until recently for me to accept that things are just different now, and that it is OK to be sad about the change. I miss our old life, but this new life can be good too. I chat more with my family and friends. And I find other things to keep myself busy and happy. And we sit and watch TV/movies together at night, and that makes me feel like we still have closeness.

 

[affected]

bulbar onset is cruel as it takes so much from the relationship so early isn't it - I found it very isolating and incredibly sad as we used to talk and laugh for hours and hours on end. it means making real effort to ensure we keep as much good in life as we can find and make, not always easy, but worth every win we manage.

 

[vltsra]

Mary and RMT, have you started the process to get your PALS an eyegaze tablet? My PALS has had his for probably 18 months. He can talk almost like normal with the tablet. We can have conversations. He can also watch YouTube videos and send text messages. It keeps him connected.

 

[rmt]

V, that's fantastic that the tablet works so well for you guys! I wish my husband would try harder to get used to his tablet. He had been so resistant to use it. His hands are still working fine, but his communication issues are because he can't find the words he wants. He has FTD, mostly causing expressive language issues, so he has a very hard time expressing himself with words. We have our ALS clinic visit next week so I'm going to ask if they have any programs that might work better with expressive aphasia like his.

 

[lgelb]

Some iOS and Android AAC apps enable the PALS to select icons rather than words, and some allow you to import your own images, like a photo of you or anything else. Your husband might find those easier.

 

[Mary2]

My PALS has a hoarse voice but is still understandable. He is struggling to use dictation to send text messages and emails. Maybe the eye gaze tablet would be better. His first reaction will probably be negative but he has very limited use of his hands/fingers now.
He needs to be fed and can't hold a urinal. Maybe we should look into the tablet. His voice could go at any time really.

 

[affected]

Mary I always feel that it is best to start learning now, before there is a crisis. So much harder to learn all this if his voice is suddenly gone, than if he can use the new method sometimes, or just as learning, rather than that's all I've got.