leegardens
Active member
- Joined
- Apr 5, 2008
- Messages
- 31
- Reason
- CALS
- Diagnosis
- 03/2008
- Country
- US
- State
- Georgia
- City
- Atlanta
Hi! My 59 year old husband has been diagnosed with bulbar ALS and Frontotemporal dementia. He started with slurred speech and a thick sounding voice in October. When we saw the neurologist on Jan. 3, the Doc saw fasiculations on my husband's upper arms. Since then we've had all the tests and the Doc told us ALS. J searches for the right words to use and gets confused some times. His behavior and personality have changed a great deal also. An osteopath told him that he had a problem with his spinal fluids and J thinks that is what is causing his tremors.
We went to Emory's ALS center and they confirmed the diagnosis on March 18 and told me about FTLD. They prescribed Rilutek and a bipap. We just saw the neuro psychologist last Monday and she confirmed the FTLD. According to them the dementia will get my husband before the ALS does. He has fasiculations all over his body and is really fatigued all the time. He won't use the bipap for more than an hour because he claims it gives him a sore throat. He has the full face mask because the other face mask bothered his nose too much. He thinks if he gets rid of the fasiculations then he won't have ALS. He doesn't even know what ALS is or how it progressies. I asked the psychologist if my hubby would have episodic dementia or if it would be full blown, full time. She told me the latter. I don't think that I should tell J what to expect. I asked him if he wanted to know and he said no, just tell him when he has doctor appointments. It seems like we got hit with a double whammy- ALS and dementia. I keep telling myself it will be a blessing for him not to know what he'll be going through with ALS. He doesn't know about the dementia either.
So here's my question- we have been planning to go to Italy for a month for a year and a half. We sold our business and moved to be close to our daughter and the grandbabies, this happened before he became sick. We were going to travel and do all the things that we were too busy making a livinig to do. J still wants to go to Italy and I want this trip but I am afraid I could be making a big mistake- more because of having a health issue with the ALS- breathing or choking- than with a problem of doing too much. There are also the personality changes to worry about. I know his type of ALS will progress rapidly. I purchased trip insurance along with our tickets- this was before the diagnosis. Does anyone have experience with front temporal dementia? Should we go and just take it easy? It has been emphasized to me that the dementia and the loss of 'executive function" will make the trip more difficult. I will have to take away his car when we return because his judgement will become questionable. Is this a bad idea?
We went to Emory's ALS center and they confirmed the diagnosis on March 18 and told me about FTLD. They prescribed Rilutek and a bipap. We just saw the neuro psychologist last Monday and she confirmed the FTLD. According to them the dementia will get my husband before the ALS does. He has fasiculations all over his body and is really fatigued all the time. He won't use the bipap for more than an hour because he claims it gives him a sore throat. He has the full face mask because the other face mask bothered his nose too much. He thinks if he gets rid of the fasiculations then he won't have ALS. He doesn't even know what ALS is or how it progressies. I asked the psychologist if my hubby would have episodic dementia or if it would be full blown, full time. She told me the latter. I don't think that I should tell J what to expect. I asked him if he wanted to know and he said no, just tell him when he has doctor appointments. It seems like we got hit with a double whammy- ALS and dementia. I keep telling myself it will be a blessing for him not to know what he'll be going through with ALS. He doesn't know about the dementia either.
So here's my question- we have been planning to go to Italy for a month for a year and a half. We sold our business and moved to be close to our daughter and the grandbabies, this happened before he became sick. We were going to travel and do all the things that we were too busy making a livinig to do. J still wants to go to Italy and I want this trip but I am afraid I could be making a big mistake- more because of having a health issue with the ALS- breathing or choking- than with a problem of doing too much. There are also the personality changes to worry about. I know his type of ALS will progress rapidly. I purchased trip insurance along with our tickets- this was before the diagnosis. Does anyone have experience with front temporal dementia? Should we go and just take it easy? It has been emphasized to me that the dementia and the loss of 'executive function" will make the trip more difficult. I will have to take away his car when we return because his judgement will become questionable. Is this a bad idea?
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