CALS Roll Call Continued

[rmt]

My husband had his 4 year follow up appointment yesterday to see if he is still PLS or if it was not ALS. His clinical exam showed no clinical weakness and his EMG was clean! We are thrilled to still be considered PLS!

The doctor thinks his aphasia is likely to be the language variant of FTD. I agree that seems most likely. He ordered genetic testing because he is sure that my husband will have the C9orf72 mutation, since that is the one usually associated with ALS-FTD. But from the research I did last night (thanks Google!), it seems like the language variant of FTD is very rare for C9orf72. It will be interesting to see if he does have any of the mutations.

Because of the possible FTD, the doctor says he can't say with confidence the PLS won't still become ALS, even though the 4 year mark is usually when they more confidently say it will stay PLS. So that is disappointing. But we are just happy to still be in the PLS group!

I'm hoping the good PLS news will improve my husband's mood and his motivation level to keep doing things. It would be great if he could start engaging more in the things he used to like doing. Baseball starting has been great and he is watching all the games!

 

[vltsra]

Robin that's good news for you and your husband. I'm no expert but I understand with PLS it is not terminal and he should retain some function.

Monday was my husband's birthday. What can you really buy someone who is in his condition. He has been telling me that he feels abandoned by friends and forgotten. So I texted all of his old buddies and my family and other friends and asked them to send him a text. My painting teacher also sent out a text to all of his students asking them to wish him a happy birthday. He must have gotten 60 text messages!

After I contacted his friends two of them said they wanted to visit. One of them came by on Monday and one yesterday. They haven't seen him in years and I'm sure it was difficult. One of them almost broke down but I told him he had to be strong. My husband was so touched and felt loved. I hope they continue to come by.

This morning his nighttime caregiver told me with great concern that she thought he had a UTI because he was only passing a small amount or urine and he told her it hurt. When I asked him this morning if he thought he had an infection he shook his head. Once I put the tablet up he told me that the problem is she yanks it out and holds the urinal up too high and it blocks the flow and it hurts. At least we had a good laugh about it!

V

 

[rmt]

V, it sounds like your husband's birthday was a success! That's great! I'm so glad his friends texted and came by. And the urinal story is hilarious!

Yes, if my husband continues to have PLS and it doesn't become ALS, it shouldn't be fatal and he may retain some physical function. That's what we are hoping for! He moves much more slowly now and it is getting harder for him to get around. But the biggest question mark is the FTD issues. It is mostly aphasia, but it is hard to tell if there are also some cognitive issues going on.

 

[Mary2]

V.. Happy Birthday to your husband! RMT..Good News on the EMG report! We are going along okay. Our usual caretaker had his first day back today and that went well. Pals seems in okay spirits considering the circumstances. We watched a movie today and a documentary on National Parks. Some days now we don't spend any time together except for care needs, so it is good we did this today.

 

[rmt]

Mary, I'm glad you and your husband spent some time together! And that your usual caretaker is back. Hopefully you can take some time for yourself too.

 

[Mary2]

The good news is that I got to see a friend for 2 hours on Saturday and then went to the Bed and Breakfast and took a walk. The room was so clean and uncluttered. I read most of the evening. A friend joined me for breakfast the next morning. I stopped by a church on the way home on Sunday just to go to a service and be among people. The bad news is I am having trouble adjusting back. The caretaker wanted a couple of hours off and instead of being flexible, I canceled him for the day. I am tired of the work at the employees convenience attitude. Hope he comes back, I guess he could go work for someone else. The house is so cluttered with Kate Farms solution boxes and blankets and boxes with gloves and wipes. He complains constantly and asks for the urinal every half hour. I could go back to the bed and breakfast and never leave. When using the computer he constantly says click, click, click to move the dictation. I can hear it all over the house. I know there is a life out there for me. It just seems so out of reach.

 

[wishmobbing]

Hey, Mary. Adjusting back into the rut is hard. I hope you can find regular small getaways. The smaller, the more often you deserve them. I hope somehow you can lasso some of that life out there into your home.

I think my niche was in the late morning after I had my PALS washed, pampered and ready for the day. I set him up the Netflix series he was binging at the time and declared (maybe more to myself than two him) that I now needed food. And most days that meant cutting up four different fruits, topping them with yoghurt und granola. This alone takes some time and then it's this huge mound of food that does take some time to munch. I really took my time for this, even when I'm was rushing into it. Cutting everything up calmed me down. Kind of a ritual.
Maybe you could ask your husband beforehand to keep it together for ten minutes longer if it's not a dire emergency because you're on break now. He sounds very demanding at this time. If it's not because of a problem like a urinary tract infection or some other cause that could be improved, he's "just" uneasy because this nasty disease manifests in so much loss of control. Maybe he's open for a little reframing. Just a thought: Ask him for his help. Because you need him to watch out for you and to care for you. Being dependant and at your mercy is passive. Helping is active. Being active means being in control. It could really feel good for him to say "Hey, why don't you take the next hour(?) off, read the book you told me about, I'll be okay."
He could consider having patience as actively caring for you. Maybe waiting with one low-priority request until you're there anyway for a high-priority task.

I remember how grateful I felt when after a hard day my PALS suggested he could wear a urinal condom (a wonderful invention he was using mostly for outings) at night. It meant I could very likely sleep without having to get up a couple of times. And he was smiling because he knew he did something good for me and I needed the rest to not be a grumpy ghost in the morning.

 

[vltsra]

Dear Mary your getaway sounds wonderful! I'm so glad you were able to take the time out for yourself. You needed it.

I'm having trouble with caregivers too. This morning I had to ask our daytime caregiver to please be kind to my PALS. He complains constantly but every time I ask if he wants someone else he says no. I've had a revolving door of nighttime caregivers. It's hard taking care of him and managing all of the people as well. I hear you about the blankets and gloves and equipment and formula etc...my house is a disaster now.

The constant urination does sound like something else going on. Maybe he has a UTI.

I really hope for you that you can think back on your break and remember the calm it gave you to help you in these difficult moments. It helps to escape mentally. Sending you support and hugs.

V

 

[rmt]

Mary, I'm so glad you had a nice getaway! You definitely deserved it. Coming back is so hard. I love the advice to rephrase things to put your husband in control of giving you some breaks. Maybe that would work and help him understand that you need a little time to yourself.

I finally talked my husband into a haircut. His hair was so long and shaggy and hard to keep clean. It was driving me crazy. I just cut it and it looks so much better! He looks 15 years younger and looks like himself again. So handsome! It is amazing how something so small and trivial is making me so happy.

 

[vltsra]

After a warm weekend we are colder and gloomy. My PALS has not gone out the past two days.

I'm seeing signs that it is getting harder for him. This week he has been refusing showers and wanting bed baths instead. He's been struggling more with his secretions. He was depressed yesterday because he was having difficulty operating his chair.

I'm worried about where this is heading but I am here with him.

V

 

[Mary2]

RMT, Glad your PALS' haircut has lifted your spirits!
V, My PALS is having difficulty operating the chair as well. He is still using his hand to do this, but is losing strength and mobility. I have had to tell the caretaker he can no longer go to his car and smoke unless I am home. This is because the frequency of PALS choking and needing water with thickener to clear his secretions is increasing. On the positive side PALS has decided to write a toast for the wedding and have someone read it! This is a wonderful idea and my son has really embraced it. This is the same man who a few months ago was saying he shouldn't go to the wedding. If we can just make it past the wedding, I will be ready for the next stage of this disability.

 

[rmt]

V, I'm so sorry things are getting harder for your PALS. I think worrying about where things are heading is one of the hardest parts for CALS. I feel so helpless but all we can do is be there for our PALS.

Mary, I'm glad your husband is getting more excited about the wedding! That is great news!

 

[Mary2]

We are going along okay. PALS has gained weight since starting the tube feeding, so I have cut back on the Kate Farms and am awaiting contact from the dietician. I give myself credit for keeping his weight steady while I was cooking. I am sorry I didn't notice the weight gain sooner; it happened quite rapidly. PALS says he was unaware that he was gaining weight. I have not been able to find a caretaker for PALS for the wedding. I will keep looking, but am preparing myself to do this on my own. There are teenagers in the family that will be able to help me move supplies and equipment. I did make a counseling appointment with an ex-counselor because I need someone to talk to about all this over the next few weeks. I don't want to be venting all the time to friends. I want to try and be a positive person.

V I did think about you during the week and am sorry the weeks are getting more difficult.
RMT I hope your week went along okay

 

[rmt]

Mary, my husband gained weight too after getting the tube. He needed to at first, but now he's got a little bit of a belly going! He is cutting back on some of the feeding, and going more on how hungry he is instead of trying to always eat a certain amount.

My husband's balance is definitely getting worse. I got him a cane, walker and shower chair, all of which he said he doesn't want. Mostly he tries to do everything as if his balance was normal, and amazingly he hasn't had any falls. It helps that his arms are strong so he can catch himself. I want to put a helmet on him and wrap him in bubble wrap!

Thankfully he has finally agreed to let me help him shower! And when I suggested he sit down on the shower chair instead of trying to stand up the whole time, he begrudgingly did it...and now he really likes the shower chair! It makes me feel so much better to be there helping make sure he doesn't fall. He still does the showering part by himself (though he's letting me wash his hair which is nice) but is taking my suggestions better about sitting down as much as possible. I also just put in a grab bar so we'll see if that is useful next time he showers.

For sleeping, I start out in bed with him and we listen to music and hold hands. Then after about 45 minutes, I move to a foldable mattress in the next room so that he can sleep without worrying his restless legs are bothering me. When I wake up in the morning to pee, I go back to the bed with him and finish the night. We both are sleeping better and this strategy feels sustainable. But I miss sleeping in the same bed all night.

I've been feeling lonely lately. I really miss having my husband to talk to. I have some fun things planned with my family this summer and it makes me sad to think that he won't be there with us (he doesn't want to go). We used to have so many adventures and fun times and it is heartbreaking to accept that things are so different now.

 

[wishmobbing]

Good to hear that he's accepting a little more help with showering. For a while I found it to be one of the fun times with my PALS boyfriend. (It seemed practical and economic for me to take a shower at the same time ;- ) It shifted to be a bit more work and often slapstick once he couldn't sit unsupported and especially after his breathing got worse.
When I took a shower by myself I enjoyed sitting on the shower chair, too. It was the next best thing to taking a bath.

Your nomadic sleep really sounds sustainable. But maybe you can once in awhile stay the whole night and tell him beforehand you really won't be bothered by restless legs, if you feel lonely. I get his perspective. My now boyfriend has restless legs, too. On a good day it's nothing, on a mediocre day his feet jump like popcorn but we don't mind and on a bad day he prefers to sleep alone, so he can loudly be annoyed with himself without being rude to me.

Your summer plans sound good. Do you think he will enjoy getting photos and messages sent? You could offer to take him with you digitally, if that won't make him sad because he can't participate the way he used to