My heart is breaking

[Jalynn]

My dad was "unofficially diagnosed" with ALS on 9/12/16 by an ENT due to tongue fasciculations. He saw a neurologist on 9/20 who ordered extensive bloodwork, as well as other tests. On 9/22, an ambulance was called due to him being incoherent. He was then diagnosed with double pneumonia with a WBC of 22,000. He was put in the hospital where a CAT scan and MRI were ran and showed no stroke or abnormalities. The neurologist is still saying ALS. His epiglottis no longer works and had a PEG tube put in Tuesday, 9/27. Yesterday, he looked so bad, wasn't feeling like sitting up at all. He's so skinny and his little arms twitch all the time. His speech is slurred and he's difficult to understand, but he tries so hard to talk to us. It's so hard not to cry seeing him like that, but I don't want him to see me. His pneumonia is not getting better as a repeat chest x-ray today still showed the pneumonia and his WBC is still 22,000.
He is supposed to have a nerve study done on Oct. 15. I had no clue this could happen so fast. He didn't have any symptoms that we noticed until earlier this summer. This is a horrible disease and my thoughts and prayers go out to all of you dealing with this right now.

 

[kellykago]

I'm so sorry you are experiencing this. My father was diagnosed in Oct 2012 and he had fast progression. It was difficult on our family, but we all pulled together to make his last months as enjoyable as we could.

I am now facing a similar diagnosis for myself as I was diagnosed Wed with possible ALS. I know firsthand what to expect, but I am trying to be positive and make the most of my life whether its months, years, or decades.

Try to join an ALS support group. It may help

 

[soonerwife]

So sorry to hear about your dad, Jalynn. This is ALOT to deal with especially so rapidly. I wish I could be of more help. We are here for you if you need to ask questions or vent or whatever.

 

[scaredwifetx]

Jalynn, I just wanted to tell you how sorry I am. You have a lot to deal with so quickly. Support here does help. Everyone here will so their best to help you.

 

[affected]

So sorry for this diagnosis. The rapid progression makes it so hard to get your head around anything let alone keep up. xxx

 

[cmropen]

Jalynn, your story is heartbreaking and I'm so sorry your family is going through this. Your father is lucky to have great family like you around him through this impossibly difficult time.

Kelly mentioned joining a support group can help. I wanted to second that. The hospital may have some suggestions of local support groups for caregivers. The local chapter of the ALS Association may also be a great resources for information and support.

Hang in there.

 

[FamilialALS?]

Jalynn I'm so sorry this is all happening so fast. Hopefully dad's acute symptoms will be controlled so his ALS symptoms can be be assessed and managed.

We'll be here for whatever support you need.

 

[lgelb]

Very sorry to hear about your dad, Jalynn. Does he/you have a smart phone or tablet? In both the Android and Apple stores, there are free apps for "text to speech" where he can touch the screen with a finger and have a word or phrase spoken. There are many ways to mount a device over his bed so it is easy to access. Let us know if you need more info.

Best,
Laurie