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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.
 
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I'm so sorry to welcome you here.

You father is bulbar onset as that means what part of the body symptoms started in. He is having a rapid progression and though this can suddenly halt for a while or slow, it may remain rapid and it's really hard to get your head around that. I know as my Chris was rapid progression bulbar onset and I was running to keep up with progression.

You will find a lot of support here xx
 
So sorry to hear about your dad. My husband also has bulbar onset.

I understand the anger. I feel this way too. My husband was only 50 when symptoms started.

I am glad your dad has the feeding tube scheduled. It's hard to not lose weight when it is difficult to eat.

Sounds like you all have a wonderful family and alot of love.

You have found a great place for support. Feel free to ask questions or rant or whatever you need.
 
Thank you both so much...I am posting here for my mom as well. I'm sure we will have many questions in the near future.
 
Sorry to hear about your dad's rapid progression. Bulbar can be a faster type. One thing I'd mention is that swimming is possible with a PEG, but also there are beach wheelchairs that will go into the surf.

At home, a lift chair might be more comfortable for him to set the back support he now needs, if he does not have a recliner that will help him up.

Best,
Laurie
 
Swimming is fine with a peg but you have to let the stoma heal for a good 6 weeks before swimming, so I can see why that was put off to allow that beach trip or he would not have been able to swim straight up.
 
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