Month: July 2016

The Week in ALS…

tragerstreit2 Comments

This should probably be a vlog post, but I don’t feel like putting on makeup and sitting in my hot office to record one, so you get a micropost update.

So to sum up:

1) The orthotics appointment for testing various knee braces was stressful and awful. Traffic was horrifying – it took us literally an hour and fifteen minutes to drive a 35 minute distance. When I called to give them a heads-up, she was AWFUL and rude to me, “Well HOW late.” “I don’t really know, maybe five to ten minutes?” “Well where ARE you.” “Two exits away, but traffic is unpredictable.” “I’m going to check with the doctor and make sure that he even has time for you.” I was literally ON the exit when she came back and told me I’d have to reschedule because they really needed EVERY MINUTE of my appointment time to work with me. “How about this. I’m on my way in RIGHT NOW. If I show up too late, I’ll reschedule in person.” When I showed up seven minutes late, they cheerfully had me fill out the paperwork and wait in the office lobby for five minutes. So I guess I’m not allowed to be late, but they can delay all they want.

And then, they had me try on a brace that didn’t help at all, made walking even NOISIER, and when I tried to take them off, I had to shove the velcro between my palms and push them hard together while I pulled at the strap in order to get them unhooked, because my hand strength wasn’t enough. And then they told me that anything sturdier would make sitting and standing nearly impossible, so they have nothing that can help me.

2) Dr. Goslin called and then emailed me yesterday (because I didn’t answer the phone) to tell me that I was disqualified for the new research trial. I did not take it very well; about as hard as I took the initial diagnosis, actually, because it felt like hope for SOME good to come out of this had been pulled out from under me. Again. I spent the entire day sleeping.

3) I woke up this morning still in a funk, and while getting ready for work, I had a fall. Just, knees gave out while I was coming out of the bathroom, and I landed very solidly on the linoleum on my knees like I’d just had a religious revelation. It hurt a LOT, and I resisted crying, but let myself just lay in the bathroom doorway for a little bit while Ianto very nervously sniffed me. Falling and getting up while wearing my braces makes everything suck worse, because it holds my ankles in a fixed and uncomfortable angle while I’m crawling. Usually when I fall at home, the first thing I do is yank my boots off if I’m wearing them, to make getting up easier. But I was already running late.

So, it’s been a terrible week on the ALS front. This is not to say the week has been terrible; I saw my favorite radio play live, with some of my very favorite people, had an awesome Saturday showing off Portland to a friend I hardly ever get to see because she lives far away, and my elderly cat is actually recovering quite well from his sickness. So yay for all those things. Yay.

And now you are updated!

Sometimes Snake Oil is Actual Medicine.

tragerstreit1 Comment

So! I had a follow up with Dr. Goslin about all the things that came up from clinic day, notably meds changes, follow up with the physical therapist, and a general check-in. I found that I had lost 5 pounds, which I am not at all unhappy about. She was unconcerned about that, telling me as usual that maintaining my weight is important; as long as I’m not dropping weight quickly it’s not a problem. Even though I miss being 60 pounds lighter, I suppose that will come in time, and that will be a problem. But until then I am fat and alive.

As far as the physical therapist goes, we didn’t find any braces that helped more than the ones I currently have. Most of them actually exacerbated the problems, particularly on inclines and declines. Instead we’re going to look into some sort of knee brace, as my knees are usually what fails when I fall. We’re thinking some sort of neoprene brace with metal supports; maybe that won’t make it quite so meat-stilty when I walk. We will see. Basically anything that keeps me walking as long as possible is a good thing, in my opinion. Ideally, also not tripping over the cats would be good.

Regarding the meds conversations, we had started me on something to help with the… er.. accidents… And something to may be kickstart the antidepressants again, as they didn’t seem to be doing a whole hell of a lot lately. Lab bladder control made is working out awesomely, we’re going to slightly increase the dosage on that. The other med doesn’t seem to be helping but it also doesn’t seem to be detrimental, so we are going to slightly increase the dosage on that. Maybe we’ll get a reaction. We are also increasing the dosage on Nuvigil, to see if we can’t kickstart my energy levels some more. In that same light, we are decreasing the gabapentin because I’m not sure it’s doing much of anything anymore, and it’s known to cause drowsiness, and I really hate taking something three times a day. Hopefully I can taper off that altogether. The antidepressant kick starter was also prescribed hopefully to reduce the migraines; I haven’t had one in a couple of months and I’m not sure if that’s working, or if it’s just that the Botox is no longer in my system.

Related to the headaches, we had a conversation – again – about the Cefaly device. When she had first talked to me about it, she had explained that she KNOWS that it looks like snake oil and seems super fake. (Seriously so fake.) The science she assured me, was sound and it had potential to be effective. Since then, she had actually tried the device and bought a few for her patients to try; a few of them reported up to 50% fewer migraines. It worked so well that none of her patients have returned it. So she wrote me a prescription for one, and almost $400 later, it should be arriving soon. The crappy part about it is that insurance will not cover it so this was out-of-pocket. Expect future updates when I finally get my hands on it. LIVE FROM THE FUTURE WITH MY SPACE HEADBAND OF MIGRAINES -2 !

We also spoke about medical trials. She hadn’t been able to attend the research symposium, so I told her about my conversation with Dr. Beckman and how frustrated he seems with his complete lack of progress. She shared my sense of dismay and agreed that an actual trial is probably not forthcoming anytime soon. HOWEVER, she told me, there was ANOTHER trial about to start. LITERALLY about to start. Like, in August. She was positively geeking out about the potential for this trial, super excited about the potential, and in fact said she felt BETTER about this than the copper trial. It’s centered on inflammatory behavior with ALS degeneration; previous trials had stopped the progression of ALS in patients with those inflammatory markers while they were taking this drug. Only 35 percents of ALS patients have those markers, though. It’s an IV administered drug, and a six-month trial; I think she said five visits for the first two months and three visits a month for the rest of the duration. I’m not exactly sure what it entails in detail, but I suppose I shall find out if I am selected for this trial. Because of course when she asked if I was interested, I said HELL YES. The trial coordinator is supposed to be giving me a call very soon to give me more information and arrange to have me tested to see if I have those markers.

So THAT’S exciting.

She also suggested, which in retrospect seems OBVIOUS, that I go to the physical therapist to learn how to fall gracefully, and how to get back up. It’s the getting back up that’s the problem, usually. So I’m going to go do that. Soon. In the meantime she gave me materials about various “med alert” type devices. Which, I realize I really SHOULD be looking into, but every time I think about it, the phrase “I’ve fallen and I can’t get up” also goes through my head. It’s one of those stupid associations, one of those steps that feels like surrender, no matter how practical and ultimately necessary it may be. I’m working on getting over that.

So that’s the haps. You are now fully updated. I’ll make a goofy video once I get the Cefaly. I’m sorry I haven’t been updating lately, the world those outside and inside has been in that sees stupid, dramatic, and sad. So I’ve been in full out capital avoidant mode, sitting in bed with my cats eating candy and watching nature TV. It’s so much easier.

I hope life is treating you kind. I hope you are safe, and happy.. And I hope it stays that way.

Pikachu used ABLEISM! It’s SUPER EFFECTIVE!

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A conversation I’ve had a couple of times:

“Are you playing Pokemon Go?”

“No.”

“How you could you NOT!? It’s collecting cute things! That’s TOTALLY you.”

“Because it’s a WALKING game.”

“….Oh. Right.”

“Dick.”

I did eventually install it, and I’ve been able to play a little, because going slowly in a car still sorta works, but I am sad that there’s a huge social aspect to this game that I’m missing out on by virtue of mobility problems. I don’t hold that against anyone though; it just is what it is. Go catch them pokeymans!