Home

To clarify, the photo above is not my home, but it’s what I’d like my home to look like. It’s very Boho! Okay.

Moving on …

Minke is home from the hospital. I brought him home last Wednesday afternoon. He was at the hospital in total for 5 days. One full day in the ER and four days upstairs.

First, I’d like to say THANK YOU to everyone who sent well wishes, love, support, prayer, and all the loving messages, texts, and emails that were sent. You have to know how very much we both appreciate your kind words and blessings.

And now a word from Minke:

The texting, phone calls, emails, Insta, and Facebook Messenger are frankly out-of-control for me. This is the place to come to get updates because I only have the energy to tell the details once. It’s too, too much to go into the story more than that. I will always do my best to update the blog; so please respect that and know the details will land here eventually. That goes for you too, family. I love you very much, but I’m spread way too thin these days. Read the blog!

If you are looking for good news or some sort of fairy-tale ending to Minke’s tale, you’ve come to the wrong place. Never forget that we are dealing with the most horrible, insidious, despicable disease that ever was. ALS fucks with everyone involved. The patient. The spouse. The caregiver. The doctors. The nurses. Everyone! ALS doesn’t give a shit, and if ALS was a person, it would be a psychopathic serial killer who takes pleasure in causing pain. Sadistic as fuck! Excuse my language. Or not. I don’t care. I’m very angry. Why don’t the experts know? This disease is 160 years old! How many more people afflicted with this disease have to live with unanswered questions? It’s torturous.

Minke was at the VA hospital. In all the hospitals that we’ve been in since this began, the care in the ER at the VA was by far the best. Remember, he was in delirium and they were right on top of getting him tested and diagnosed. But here’s the thing: The urine labs came back normal. The blood labs came back normal. His low-grade fever went down to normal, and they couldn’t find anything here. So, they admitted him.

By the time he got upstairs at 7 pm on Saturday night, he was lucid. Why? He had spent all day in the ER like a blathering maniac and then, all of a sudden, lucid. No explanations. Minke’s white cell count was slightly elevated indicating there might be an infection. He was given an antibiotic, even though they could not find the source of the infection. His first night in the hospital was non-eventful. He wore his Bi-Pap mask and mercifully slept.

During the hospital stay, Minke had a CT scan, and a CAT scan, both ruling out stroke and bleeding in the brain. He got an EEG to rule out seizures. It was normal. And finally, he got an MRI which also came back normal. The docs were scratching their heads. But that’s what ALS wants them to do. Remember NO TWO PATIENTS ARE ALIKE. So you just have to make an educated guess. UGH!!

A lot of what I’ve written I already put in my last post. So I will skip ahead.

Upon discharge, they had no definitive answers for what happened to Minke. Because ALS is a sneaky son-of-a-bitch and wants to keep us constantly guessing. The pain Minke experienced is very likely the muscles in his stomach and diaphragm atrophying. ALS is a disease where the muscles literally disintegrate. We’ve already seen this in Minke’s limbs. Now, it’s happening internally. The muscles in his stomach and diaphragm are spasming as they deteriorate and ultimately as the nerves die, the pain will eventually stop. When? Don’t know. So far, Minke hasn’t experienced the Level 10 pain he had in the hospital. But it could happen again at any time. I’m on constant alert.

Minke’s also much shorter of breath than he ever was before. Was the delirium caused by a lack of oxygen and an abundance of C02? Was it C02 poisoning? Don’t know. Docs don’t know either.

ALS is also associated with something called Frontotemporal dementia, where portions of the frontal lobes in the brain atrophy. Not all ALS patients get this type of dementia, but we need to be aware of it and on the lookout. The neurologist said Minke’s delirium came on very quickly, so it’s not likely that it’s FTD, but of course, we need to keep monitoring it. We can’t rule anything out right now.

So, we are currently in Late Stage ALS. We got here very quickly. There’s only one stage after this one … End Stage. And we all know what that means. Late Stage ALS looks like this:

Minke is unable to walk and requires his wheelchair whenever he is out of his hospital bed.

He requires assistance in reaching for objects, feeding himself, going to the bathroom, and doing any sort of communication using technology. So he needs Molly or me to type his texts and emails, and to push the buttons on his phone. He can still talk and chew and swallow, but once he gets the trach, he will have to take everything through the feeding tube and will need to use Eye Gaze Technology to communicate.

So … these are our current circumstances. I hate it, in case any of you were in doubt. My body is on fire every day with the chronic pain of stress, arthritis, and sleep deprivation. There are always a million things to do and keep track of and appointments to make and people to talk to and emails to write and I hate it. I hate all of it. I want my life back to the way it was. But like I said, this ain’t no fairy tale and there’s nothing I can do about it. I just need to carve out the moments when I can hug and kiss my Minke. Where we can watch a show together and laugh. Where we can share our love for Mrs. Zelda Goldfarb and feel gratitude for having the time that we have. It’s all I can do. But I’m not very good at it. Because I’m grieving even while he’s here and I don’t know how to stop that. I don’t know how to enjoy what I have right now at this moment. I’m trying. But I don’t know how.

Below is one of our favorite songs, for your listening pleasure! Enjoy!