Mydad
Member
- Joined
- Apr 12, 2017
- Messages
- 26
- Reason
- Loved one DX
- Diagnosis
- 03/2017
- Country
- us
- State
- TX
- City
- ooooooo
Hi everyone,
I have been reading the forum for quite a few months now trying to gather as much information on ALS as I can. My dad was diagnosed with ALS on 3/2017, they never stated if it was Bulbar or Limb-onset, but it all started with slurred speech at the beginning of DEC 2016, so we assume it is Bulbar b/c of how the symptoms started.
By January he started coughing/choking on some food when eating. He had a rotator cuff injury a couple years ago and was hoping before these symptoms started that he would be able to have the surgery, but was told he couldn't now.
He has lost almost all arm movement in his right arm and fingers are starting to curl and his left arm is getting weaker and weaker. He can no longer sit up by himself stomach muscles are gone and when he went to the ALS clinic last month his lung capacity was at 39% so he is now on a BIPAP at night and some during the day. They have issued him a cough assist and suction b/c saliva is starting to become an issue.
My mom is his caregiver and my brother and his wife will be moving in in June to help my mom and dad out. I am 10 hours away and told my mom and dad if they need me to come home I will in a heart beat. My dad is getting a PEG next month after they go to Port Aransas they wanted to wait until after the beach since they told him swimming with a PEG could cause leakage.
I should have stated this in the beginning, but my dad did have his 2nd opinion by a doctor that specializes in ALS and has had all of the testing done. He is only 57 and supposed to have a full life ahead of him with my mom now that us kids have moved out and are settled with our lives.
It's makes me so mad to see him lose something everyday. In just the last couple of days my mom told me he gets too tired to finish his plate of food so she has to feed him the rest. It has only been almost 4 MONTHS!!
How can his progression be moving so fast???? His legs are still strong, but seems like everything else if going very fast. I am very grateful for this forum and so is my mom. We are a very close family and this is breaking our hearts.
I have been reading the forum for quite a few months now trying to gather as much information on ALS as I can. My dad was diagnosed with ALS on 3/2017, they never stated if it was Bulbar or Limb-onset, but it all started with slurred speech at the beginning of DEC 2016, so we assume it is Bulbar b/c of how the symptoms started.
By January he started coughing/choking on some food when eating. He had a rotator cuff injury a couple years ago and was hoping before these symptoms started that he would be able to have the surgery, but was told he couldn't now.
He has lost almost all arm movement in his right arm and fingers are starting to curl and his left arm is getting weaker and weaker. He can no longer sit up by himself stomach muscles are gone and when he went to the ALS clinic last month his lung capacity was at 39% so he is now on a BIPAP at night and some during the day. They have issued him a cough assist and suction b/c saliva is starting to become an issue.
My mom is his caregiver and my brother and his wife will be moving in in June to help my mom and dad out. I am 10 hours away and told my mom and dad if they need me to come home I will in a heart beat. My dad is getting a PEG next month after they go to Port Aransas they wanted to wait until after the beach since they told him swimming with a PEG could cause leakage.
I should have stated this in the beginning, but my dad did have his 2nd opinion by a doctor that specializes in ALS and has had all of the testing done. He is only 57 and supposed to have a full life ahead of him with my mom now that us kids have moved out and are settled with our lives.
It's makes me so mad to see him lose something everyday. In just the last couple of days my mom told me he gets too tired to finish his plate of food so she has to feed him the rest. It has only been almost 4 MONTHS!!
How can his progression be moving so fast???? His legs are still strong, but seems like everything else if going very fast. I am very grateful for this forum and so is my mom. We are a very close family and this is breaking our hearts.
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