stonebender: (Default)
[personal profile] stonebender
I’ve had trouble writing the last two posts. I’m a slow correspondent, what can I say? I’m not sure this post gets to what I wanted to talk about, but it’s close. I may work on it some more, but I thought letting people know what’s going on was more important than perfect communication.

On September 5th, I received my last loading dose of Spinraza (Huzzah!). After six tries and four successful injections, it seems that I have learned how to advocate the best circumstances for success. Pain meds help in allowing me to stay on the table longer and the longer I can stay there, the more chances for a successful lumbar puncture. The pain meds also help with recovery. The first few times we tried an LP, successful or not, it took several days for me to stop feeling sore. I also make sure I’m not put on the table until the radiologist and doctor are ready to go. That way they have the most time to get the needle where it’s supposed to go with as little pain as possible. So although the last loading dose took a couple hours before it was successful. It was successful!

Most of the staff were new to me. I started explaining what needed to be done and the staff were paying attention. After a bit my morning worker started taking over just by saying things like, “Wasn’t Guy’s wheelchair parked over there and you brought the lift over here?” Basically, asking questions that clarified my instructions. After a bit it was fascinating to watch. She knew me and she has been through this dance with me several times now. She knew what had worked. So I let her take over the logistics. As usual, the staff followed directions and were concerned with my comfort.

I have been paying attention to any physical changes since the treatments began. I didn’t feel much at first. Except that my breathing is easier. I’m worried that the improvement is just a placebo effect. I want to feel like all this effort amounts to something. Seems like the beneficial effects of the treatment are so subtle. [personal profile] loracs and I will be the only ones to notice.

I’m really looking forward to the next pulmonologist appointment. Then I will have some objective evidence that I’m actually improving. Until then I keep racking up observations. Along with stronger lungs, [personal profile] loracs has noticed the grip strength in my left hand is stronger. I feel some strength in my arms, but it’s not like I can suddenly raise my arm above my head. It seems like I can gesture a little more. I think I have a little bit more motion in my right hand when I use my trackball. Nothing I couldn’t do before, but it seems like I can do it longer and with less fatigue.

After the third dose, I noticed that my neck seems to be stronger. Driving in the car is always a bit of a roller coaster ride for me. I can’t hold my head very well, so it flops around a bit. I try to ride in the car in a reclined position, but that cuts into the sightseeing. I usually alternate between reclining and sitting straight up. Still, my head flops around more than I like. I’m noticing now that I can keep my head up most of the time. I also noticed that I can lift my head off the bed if it is at a little angle. I can’t lift it from completely prone. I don’t think I could lift it at all before the Spinraza.

On the possible negative side, I’ve noticed some tension headaches since the fourth dose. They don’t last long and they could just be hay-fever. The pain is similar, but I notice it when I’m being impatient or a little pissed. I am not at all sure if this is related to the drug. That’s about all I’ve noticed at this point. I think I’ll be getting a follow-up appointment in the future. So they can see where I’m at and decide what to do. I may get some physical therapy. (So I can look buff.)

On the reimbursement front, I received one of those “this is not a bill” statements from Medicare. It seems to say that all the hospital stuff is covered, but it doesn’t specifically say anything about whether the Spinraza has been covered. It even says that Connie’s services are covered but nothing about the drug. Connie seems optimistic they will get reimbursed. I’m disconcerted, but I’ll cope. Thanks everyone. I’ll keep you in the loop.

(no subject)

Date: 2017-09-21 11:56 pm (UTC)
serene: mailbox (Default)
From: [personal profile] serene
Of all of this stuff, the weird no-pre-approval thing is the strangest part to me.

Love you so much. ♥ ♥ ♥ ♥ ♥

(no subject)

Date: 2017-09-22 03:23 am (UTC)
snippy: Lego me holding book (Default)
From: [personal profile] snippy
Glad to find out about your recent stuff, and that there's even a small improvement.

(no subject)

Date: 2017-09-22 03:54 am (UTC)
tiger_spot: (Default)
From: [personal profile] tiger_spot
I'm glad you figured out a good process, and I hope the improvement continues!

(no subject)

Date: 2017-09-22 05:17 am (UTC)
pameladean: (Default)
From: [personal profile] pameladean
I've been reading all along and wishing you the best, but not having much to say. But those changes you noted sound real to me. I hope so much they are.

P.

(no subject)

Date: 2017-09-23 06:07 am (UTC)
firecat: red panda looking happy (Default)
From: [personal profile] firecat
Thanks for sharing the process, and I hope the improvement continues!

(no subject)

Date: 2017-09-23 03:01 pm (UTC)
jesse_the_k: Purple and black ring socks emerge from black leggings into green basketweave Keen mary jones (Beating heart of love GIF)
From: [personal profile] jesse_the_k
I'm glad you've found a sweeter spot on the drug administration rigamarole. I'm also glad your worker took over in the GOOD way.

Those functional changes sound encouraging.
Edited (Dyac ) Date: 2017-09-23 03:02 pm (UTC)

(no subject)

Date: 2017-09-23 07:51 pm (UTC)
wild_irises: (Default)
From: [personal profile] wild_irises
Seems to me that if it's a placebo effect, it's still a good thing.

Subtle improvements matter.

And I love you!

(no subject)

Date: 2017-09-24 08:02 pm (UTC)
nitoda: sparkly running deer, one of which has exploded into stars (Default)
From: [personal profile] nitoda
Good to hear that communication has worked well and hospital staff are responsive. Sounds like optimism might be in order. Yay for positive feelings!

(no subject)

Date: 2017-09-24 09:50 pm (UTC)
badgerbag: (Default)
From: [personal profile] badgerbag
Small improvements sound not so small to me!

(no subject)

Date: 2017-09-25 03:38 am (UTC)
light_of_summer: (Default)
From: [personal profile] light_of_summer
Good to hear about this—congrats on navigating this thing and getting some positive results, of whatever size!

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