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pkern0907

New member
Joined
May 18, 2016
Messages
5
Reason
Loved one DX
Diagnosis
05/2016
Country
US
State
Maryland
City
Baltimore
Good afternoon.
Well, I guess my Dad is one of the unlucky ones.:cry:
He was diagnosed on Monday with ALS at Johns Hopkins Hospital. They haven't said exactly, but I am pretty certain it is Bulbar onset.

Now, I will try and give you some backstory to fill this story out. It's like a real-life Tarantino movie...

My Dad has completely ignored his health for the last 4-5 years. He was a caretaker to my mother, who suffered from COPD. When my Mom died in September my Aunts basically forced my Dad to get his butt in gear and start focusing on himself. He had neck problems, and was rapidly losing a bunch of weight (approximately 100 lbs over like an 18 month span.) He started complaing about shortness of breath about 3 months ago, and was taken in for a Cardiac Catheterization, which showed he had normal heart function. Then, In April he had neck surgery to fuse three compressed disks. This is where it starts to get weird....

On April 28th my Aunt took him into the Emergency room because he was acting weird. Hallucinations, not breathing right, generally confused. The ER said he was dehydrated and put him on fluids. Fast forward a few hours and his vitals are getting worse. My Aunt refuses to let my Dad be released and demands they admit him for observation. Within 3 hours my Dad is on a breathing tube as he was only breathing 4 times per minute and his CO2 levels had become toxic.
He was taken off the ventilator after like 10 hours and started running a bunch of tests. MRIs and CTScans of the brain, spine, chest...everything is normal. Then they do an EMG and see some weird stuff. Eventually a neurologists says, "EUREKA!!!" and diagnoses him with Myasthenia Gravis. I felt lucky. "Wow, this is bad, but it could be so much worse!"
Well, they started him on treatment, he had a little improvement but nothing significant. Then another treatment, same results. The Neurologists at this Hospital recommended he be transferred to Hopkins because, well... it's Hopkins.
HE was there for 3 days and on Monday night I got a call from him with the bad news.
I feel angry, sick, depressed, confused....I JUST lost my mother 8 months ago. I need him. My sister needs him. My kids need him. I'm just at a total loss for words... :cry::cry::cry::cry::cry::cry::cry::cry:
 
That's a big blow for your family. I am so sorry it's been such an ordeal for your dad. This is a fantastic board for the ALS/caretaker/family community. While it sucks to welcome you here, you've come to the right place for advice, a shoulder to cry on and a sounding board for whatever you're struggling with.

Fiona
 
I am so sorry that you find yourself here. I am still a little new to all this also as my diagnosis was confirmed earlier this month. Take a little time and let it all soak in. ALS stinks to say the least but life does not end with the diagnosis. Once doctors figure out what is going on then they are able to formulate a plan. Sounds like your dad will be on some sort of respiratory management at first and should help him. There are a lot of people on this forum that are far more knowledgeable than I and they will chime in soon I am sure. I just wanted you to know that you are not alone. I am sorry that you lost your mother to COPD, I did as well about five years ago.

Bryan
 
Thanks, Fiona and Ryan. It's been rough, but hopefully with time everything will be ok. Even though I wish circumstances were better, I am glad I found this forum.
 
So sorry to hear about your dad. We are here for you!
 
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