Chumpy
Active member
- Joined
- Dec 23, 2014
- Messages
- 42
- Reason
- CALS
- Diagnosis
- 11/2014
- Country
- US
- State
- Texas
- City
- Fort Worth
:shock:
September 2013 my PAL started sounding drunk, he had been exhausted a lot...pretty wore out all the time. He was worried he might have chronic fatigue like his mother did when she was a live.
So time went on and he refused to follow up with the doctor...a mans man! Adapt, adjust, and over come! He had a drinking problem in the past, but had been doing well not drinking for almost a year. I was still concerned, he was getting weaker on his right side! I thought maybe a stroke! I begged him to go to the doctor. by this time it was April of this year. He got in with his PCP in June, had all the basic test and physicals done. They didn't find any thing so they referred him to a neurologist. October 2014 was the first Neurologist, he felt strong it was MND..... He had done several MRIs, brain scans, etc. Might I add we met our deductible fast! The neurologist wanted a second opinion with an ALS clinic in Houston TX. problem was soonest was Feb. 2015! So we asked for one local in Dallas! We were able to get in the next month.... If you have not experienced an ALS clinic first visit....be prepared for a day of all kinds of tests! Dietician, occupational therapist, speech therapist, social worker, medical device guy, physical therapist, and of course the neurologist! If I forgot anyone I am sorry, it was a full day!Even before all the tests, EMG, blood work, 24 hr urine test. The doctor said he was 99% sure it is ALS....I have to say I failed as a care giver! I bawled a bunch!
A few weeks pass and no phone call, nothing.... What did the tests show? My mind was going in so many directions. Now through this sadly my husband began to drink again. The stress of it all, put him in a spin emotionally! I left several messages with the doctors office. They called him and said all the tests were negative.... I wish they had called me and not him. He was not in a clear state of mind. I have to admit I was excited thinking NO ALS....will sadly NO other things, so yes ALS! I watch him get weaker and weaker. over the last 4 weeks. Still drinking telling me he just cant deal with it right now.
I don't know what to do. Most of the time he chokes on his food. Always having to clear his throat to keep from choking. Or just throws it up! His left hand and arm are shrinking away. His chest is looking like a 70+ year old now and he is only 46. You can see the tendons or bones in his hands, almost like there is no meat, just bone and flesh! He has lost almost 50 lbs since April. The social worker wanted me to get him set up through the VA since he served in the Army. He is in such a funk he doesn't want to do anything!
As a care giver what do you do, how do you proceed? I am at my wits end so much of the time! Any info would be helpful at this point! Sorry I am so long winded!
September 2013 my PAL started sounding drunk, he had been exhausted a lot...pretty wore out all the time. He was worried he might have chronic fatigue like his mother did when she was a live.
So time went on and he refused to follow up with the doctor...a mans man! Adapt, adjust, and over come! He had a drinking problem in the past, but had been doing well not drinking for almost a year. I was still concerned, he was getting weaker on his right side! I thought maybe a stroke! I begged him to go to the doctor. by this time it was April of this year. He got in with his PCP in June, had all the basic test and physicals done. They didn't find any thing so they referred him to a neurologist. October 2014 was the first Neurologist, he felt strong it was MND..... He had done several MRIs, brain scans, etc. Might I add we met our deductible fast! The neurologist wanted a second opinion with an ALS clinic in Houston TX. problem was soonest was Feb. 2015! So we asked for one local in Dallas! We were able to get in the next month.... If you have not experienced an ALS clinic first visit....be prepared for a day of all kinds of tests! Dietician, occupational therapist, speech therapist, social worker, medical device guy, physical therapist, and of course the neurologist! If I forgot anyone I am sorry, it was a full day!Even before all the tests, EMG, blood work, 24 hr urine test. The doctor said he was 99% sure it is ALS....I have to say I failed as a care giver! I bawled a bunch!
A few weeks pass and no phone call, nothing.... What did the tests show? My mind was going in so many directions. Now through this sadly my husband began to drink again. The stress of it all, put him in a spin emotionally! I left several messages with the doctors office. They called him and said all the tests were negative.... I wish they had called me and not him. He was not in a clear state of mind. I have to admit I was excited thinking NO ALS....will sadly NO other things, so yes ALS! I watch him get weaker and weaker. over the last 4 weeks. Still drinking telling me he just cant deal with it right now.
I don't know what to do. Most of the time he chokes on his food. Always having to clear his throat to keep from choking. Or just throws it up! His left hand and arm are shrinking away. His chest is looking like a 70+ year old now and he is only 46. You can see the tendons or bones in his hands, almost like there is no meat, just bone and flesh! He has lost almost 50 lbs since April. The social worker wanted me to get him set up through the VA since he served in the Army. He is in such a funk he doesn't want to do anything!
As a care giver what do you do, how do you proceed? I am at my wits end so much of the time! Any info would be helpful at this point! Sorry I am so long winded!