Cristin P
Member
- Joined
- Aug 22, 2018
- Messages
- 17
- 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!
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!