Jennanne
Active member
- Joined
- Oct 25, 2016
- Messages
- 39
- Reason
- CALS
- Diagnosis
- 12/2016
- Country
- US
- State
- New York
- City
- Buffalo
My PALS, bulbar onset, diagnosed last December has been steadily declining both physically and cognitively. Back in April we enrolled in the LEFFTDS study at the Mayo Clinic because there was a possibility that he had familial ALS due to C9 gene mutation. As part of the study he did have a brain MRI which the neurologist did go over with us at the end of the study. He said it did not show FTD, also his genetic testing was negative.
My PALS was in a leadership position, very intelligent, and was also a speaker for a medical device company. Although his hands are weak, he can still type on his iPad. He sometimes can answer questions, but many times he answers "yes", when he means "no" and vise versa. He is also mostly unable to put together complete sentences. I can usually understand what he is trying to say because I recognize the pattern that he is using (usually he mixes up the order of words in a sentence).
Are there cognitive changes that occur without FTD or might this be the beginning of FTD? His personality is still there sometimes, but it just seems buried deep somewhere, he is so easily frustrated now and can be inpatient which are 2 traits that he never displayed.
I feel terrible because I am getting frustrated and angry with him because of the cognitive changes, which I know he cannot help. We have older kids and 2 younger girls. He seems to take out the most frustration on either me or our youngest daughter. The other day we were going out, and she was trying to clean a path for him (he uses a rollator) and he kept pushing along and growling at her to move the sneakers in his way.
My heart was just breaking. She is my sensitive, empathetic one and takes everything to heart and although she seemed to take it in stride I am so worried about how this horrible, relentless disease is affecting our younger girls. I have spoken a few times with our ALS coordinator, and she has given me counseling resources but none have any specialization is ALS. There are also no support groups in our area for kids/teens who have parents with ALS.
On a bright note, we do have an amazing support network of family and friends and the older kids have been a tremendous help and distraction for the girls.
Any advice would be helpful, I am having a tough time.
Jenn
My PALS was in a leadership position, very intelligent, and was also a speaker for a medical device company. Although his hands are weak, he can still type on his iPad. He sometimes can answer questions, but many times he answers "yes", when he means "no" and vise versa. He is also mostly unable to put together complete sentences. I can usually understand what he is trying to say because I recognize the pattern that he is using (usually he mixes up the order of words in a sentence).
Are there cognitive changes that occur without FTD or might this be the beginning of FTD? His personality is still there sometimes, but it just seems buried deep somewhere, he is so easily frustrated now and can be inpatient which are 2 traits that he never displayed.
I feel terrible because I am getting frustrated and angry with him because of the cognitive changes, which I know he cannot help. We have older kids and 2 younger girls. He seems to take out the most frustration on either me or our youngest daughter. The other day we were going out, and she was trying to clean a path for him (he uses a rollator) and he kept pushing along and growling at her to move the sneakers in his way.
My heart was just breaking. She is my sensitive, empathetic one and takes everything to heart and although she seemed to take it in stride I am so worried about how this horrible, relentless disease is affecting our younger girls. I have spoken a few times with our ALS coordinator, and she has given me counseling resources but none have any specialization is ALS. There are also no support groups in our area for kids/teens who have parents with ALS.
On a bright note, we do have an amazing support network of family and friends and the older kids have been a tremendous help and distraction for the girls.
Any advice would be helpful, I am having a tough time.
Jenn