Status
Not open for further replies.

Cristin P

Member
Joined
Aug 22, 2018
Messages
16
Reason
CALS
Diagnosis
08/2018
Country
US
State
CA
City
San Diego
Hi all,
This is sort of an update post (last post was in the Newly Diagnosed) but I wanted to move my thread to a maybe more appropriate category.

My husband has gotten a second opinion from the chief neurologist at the University of Münster in Germany, where he is from. He was also able to visit with his family in Germany and I think that helped him. The second opinion confirmed the slow-progressing MND and we have had a few more tests which ruled out many mimic diseases so far. Right now his progression remains left hand weakness and fasiculations (sp?) in the left arm.

Update on me: I lost the pregnancy I had at the time of diagnosis, which was still very early along. It's terrible to say that it was something of a relief because I don't know how I could have handled having a newborn and caring for my 5 year old daughter and my husband all at once. I don't have much support from family.

Now that we are a month past diagnosis, my husband's mood has changed a lot. He's been distant from us, and hasn't seemed to want to take care of day to day life stuff that he always has done. I don't mind and can take care of stuff around the house, but I'm worried because he had really high hopes for the NurOwn trial, but was told they aren't taking new patients right now. I guess this is due to manufacturer delays, they said. Without that hope, he's been very depressed. I suggested he get counseling but he says they can't help him, and would only tell him to accept his death, which he doesn't want to do at this point. He has a point on that because it's so early on and who knows what progression will be like in the future.

Have any CALs had experience with their PALs getting counseling and has that helped them with mood? I should also mention, my husband has already been taking THC:CBD oil and THC via a vape pen, as well as curcumin based upon suggestions I read on this site. He started rilutek a week ago or so. He will have physical therapy in learning to cope with the loss of the hand
Any suggestions would be great!
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,342
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Very sorry for the loss of your child, Cristin. It's not terrible at all that you're relieved, but at some level it's still a loss.

Has he explored other trials? I would also remind him that many here feel that they have extended the quality/quantity of life through "non-investigational" approaches as simple as prompt use of mobility devices/BiPAP; ROM/stretching/massage and much more. No one has to sit around and wait for death.

As with anyone, the success of counseling is likely to hinge on who he is and what he needs at this time, but if he wants to try, why not?

A month out, I would guess he is still in some stage of depression/anger/grief and most people are helped by explicitly acknowledging those feelings, whether through a third party or with each other. Apart from counseling if he goes that route, I would encourage most of all keeping the lines of communication open, so you both know you can keep telling each other anything any time. You don't have to exercise that right for it to be important.

Best,
Laurie
 

Narrowminded

Extremely helpful member
Joined
Apr 30, 2016
Messages
2,608
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
PA
City
Pittsburgh
Cristin - I too am so sorry about the loss of your child. I’m wondering if this might not be part of your husband’s current mood. To him it may have hit harder as he may feel it was his last chance to have another child. Add in that maybe you are not showing the sorrow he would expect and is recent Dx. He is bearing a lot right now.

I suggest continually talking as Laurie has mentioned and allow him to express grief he may be having over the loss of the child and knowing the battle he is about to face.

And give it some time. It is all very new. We all process at different rates.

Hugs
 

Cristin P

Member
Joined
Aug 22, 2018
Messages
16
Reason
CALS
Diagnosis
08/2018
Country
US
State
CA
City
San Diego
I've definitely been grieving a lot these last some weeks. My husband has always been the strong one, the one that takes care of everything. He is very active and has trouble sitting still. When he had his MRI before diagnosis, he even had a hard time just laying still for 20 minutes in the machine. So I know this is going to be a huge adjustment for him, not just physically. I suggested counseling to him to help him adjust emotionally as well, but he wasn't interested, saying that it wouldn't help him. I guess my question is for others experience, to see if I should even try to convince him to get counseling? Or do you think he'll start feeling better at some point without it? He's never been a depressed guy and it's really hard for me to see him like this and not be able to help him feel better.
*Edit: Actually, as I'm writing this out, I think maybe *I'm* the one who needs counseling to accept that he's gonna change. :/
 
Last edited:

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,342
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Thanks for clarifying -- if he is not on board with counseling, I wouldn't try. You're still his best counselor. That doesn't change. If/when he needs more/different, he can make that choice.

Again, we can't over-emphasize that PALS need more than a month to -- I'm not going to say adjust or adapt -- recalibrate their expectations of the future.

So if you think you might need counseling to be a good counselor yourself, try a first visit and see if you and the counselor are a match. You've been through a lot and you know what's best for you.
 

Cristin P

Member
Joined
Aug 22, 2018
Messages
16
Reason
CALS
Diagnosis
08/2018
Country
US
State
CA
City
San Diego
Thanks, Laurie. You make a great point about the counseling helping me to help him. And thanks for listening.

FYI, he is participating in another study at UCSD, where they are taking a blood test to look for biomarkers. It's not really a trial, I'm not sure? We'll know more once he does the blood test.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,342
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
That would not be an interventional trial, where they try to do something. But he is helping science, so our thanks.

But if you click on the link I embedded, you will see there are other interventional trials going on in SD. It's worth checking the criteria for each. And you can use the filters on the left side.
 
Last edited:

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
3,666
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
It sounds like your husband has very slowly progressive disease so far. He is also young. So most likely his course will continue to be slow. He’s going to be at this a while.

This disease also threatens his ability to provide financially for your family. Young guys especially may have a hard time with that as it really hits their self-esteem.

It’s going to take him a while to come to grips with all this. But he has time. One advantage about slow progression is that there is more time to adapt to all the changes.

Counseling might definitely help but it sounds like he’s declining this. Going on a low dose antidepressant is another option. You could tell him that it doesn’t have to be a long term medication, but that it sometimes helps give a person a boost in energy. Don’t know if he’ll go for it or not, but it might be worth a shot.

Would he be interested in checking out this forum?
 

Cristin P

Member
Joined
Aug 22, 2018
Messages
16
Reason
CALS
Diagnosis
08/2018
Country
US
State
CA
City
San Diego
I've sent him the link with the clinical trials in our area for him to review if he's interested, thanks.

I've also sent him links to lots of posts here to give him ideas and info on stuff. Not sure he wants to post here himself. He's kind of a stoic guy that doesn't like to show lots of emotions or talk about how he's feeling, which makes this a bit difficult.

He did seem better after work today, and even cooked dinner (something he enjoys doing) so maybe things are looking up. He mentioned that the Rilutek makes him feel "hazy," is how he described it, and I know he hasn't been sleeping well due to the fasiculations waking him up.

Any tips on side effects of the Rilutek? Is "brain fog" common? Also he mentioned having some numbness in his face which comes and goes.
 

Narrowminded

Extremely helpful member
Joined
Apr 30, 2016
Messages
2,608
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
PA
City
Pittsburgh
Cristin - I can’t speak to the Rilutek as DH declined it. It can affect he liver and DH’s goal was to beat this thing so he did want those complications.

As to an antidepressant. DH is on one. At first I had to sneak it into him. I know, that wasn’t right, but it made a big difference. However, if your husband is seeming to be doing a bit better, I’d still give it a bit of time first.

My husband was DX in 07 after 2.5 years of trying to figure out what was going on. He’s been on a vent 8 years now. This all started at 42 I think? Your husband may have more time than he thinks. Mine continued to work and run our business until he was vented. He chose to quit then, but could have continued for a few more years.

Hugs as you work through all of this.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
8,783
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
I found the initial side effects of riluzole subsided n a month or less. Adjusting the timing might help. I was told although a 12 hour interval was ideal 8 was ok and I take it about 30 an hour before bed and first thing in am If he has to be out early that might not work of course. Also the no food thing is actually no fat. I was told it was ok to have something fat free with it like fruit

I take magnesium for cramps but it also relaxes me and helps me sleep. Don’t know if this is worth a try?

If your husband wants to he could become a lurker- he doesn’t have to talk unless he wants to. I think you see ads if you are not logged in so an account and adblocker should make it easier to browse
 

djaap

New member
Joined
Oct 4, 2018
Messages
1
Reason
DX MND
Diagnosis
10/2018
Country
US
State
NC
City
Rockwell
I find that when I am busy making things...like my art or furniture designs...I become so engrossed in my work that I forget anything is wrong with me. I am still early in this game, just received my PMA diagnosis. In my particular case, all my art goes to a charity I founded and if I ever get enough money from art, designs, or inventions, I will begin in earnest to fund and direct research. So you see I am working towards my own cure as an independent researcher--I have have infinite hope because I do believe I know how to eventually find the cure to ALS and if I am lucky, before I die. Men like to do more than talk. If he can do something that keeps him busy that also may act as a catalyst for speeding up a cure, his depression would subside. I sincerely hope this helps.
 
Status
Not open for further replies.
Top