Final loading dose... DONE!

Sep. 21st, 2017 04:45 pm
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[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)

Sep. 20th, 2017 06:04 pm
onyxlynx: The words "Onyx" and "Lynx" with x superimposed (Default)
[personal profile] onyxlynx
 L'Shanah Tovah! to those who celebrate!

Requiescat in Pace

Sep. 20th, 2017 01:03 pm
onyxlynx: Some trees and a fountain at a cemetery (A Fine and Private Place)
[personal profile] onyxlynx
All NYTimes obits:

Hippo, Birdie, Two Ewes

Sep. 20th, 2017 07:44 am
onyxlynx: Festive pennants in blue & purple with word "Birthday" centered. (Birthday)
[personal profile] onyxlynx
to [personal profile] serene !  Hoping next year is better.

Birthday greetings and felicitations

Sep. 19th, 2017 09:06 am
onyxlynx: Festive pennants in blue & purple with word "Birthday" centered. (Birthday)
[personal profile] onyxlynx
 to [personal profile] randy_byers !  Wishing you a magnificent day.

(no subject)

Sep. 19th, 2017 04:14 pm
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[personal profile] bitterlawngnome


Budapest / Bullet Holes; 6774
© Bill Pusztai 2017

(no subject)

Sep. 19th, 2017 11:41 am
bitterlawngnome: (Default)
[personal profile] bitterlawngnome


from the train window between Munich and Saltzberg; 6553
© Bill Pusztai 2017


from the train window between Munich and Saltzberg; 6629
© Bill Pusztai 2017


from the train window between Munich and Saltzberg; 6722
© Bill Pusztai 2017

Birthday greetings and felicitations

Sep. 17th, 2017 09:08 pm
onyxlynx: Festive pennants in blue & purple with word "Birthday" centered. (Birthday)
[personal profile] onyxlynx
 to [personal profile] daisydeadhead !  Hope you managed to stay dry!

(no subject)

Sep. 17th, 2017 06:45 am
bitterlawngnome: (Default)
[personal profile] bitterlawngnome


the Aspark Owl; 1396
© Bill Pusztai 2017

Well, I'm in Europe. Frankfurt right now. It's all a bit overwhelming, largely due to the jetlag which is really kicking my ass. We have completed shooting the auto show and spent some time yesterday sightseeing.


Frankfurt, pollarded sycamores by the river; 6350
© Bill Pusztai 2017

More later.

Hippo, Birdie, Two Ewes

Sep. 16th, 2017 04:33 pm
onyxlynx: Festive pennants in blue & purple with word "Birthday" centered. (Birthday)
[personal profile] onyxlynx
 to [personal profile] imnotandrei !  Hope the day is pleasant.

In Memoriam

Sep. 16th, 2017 04:10 pm
onyxlynx: Some trees and a fountain at a cemetery (A Fine and Private Place)
[personal profile] onyxlynx

Yahrzeit

Sep. 16th, 2017 04:05 pm
onyxlynx: Some trees and a fountain at a cemetery (A Fine and Private Place)
[personal profile] onyxlynx
 Yahrzeit.

12 years.

(no subject)

Sep. 14th, 2017 03:18 pm
firecat: red panda looking happy (Default)
[personal profile] firecat
Saving to read later, Krebs's take on the Equifax security breach

https://krebsonsecurity.com/2017/09/breach-at-equifax-may-impact-143m-americans/

Requiescat in Pace

Sep. 13th, 2017 08:54 am
onyxlynx: Some trees and a fountain at a cemetery (A Fine and Private Place)
[personal profile] onyxlynx
Edith Windsor,
Ultimately, the opinion in Windsor's case became the basis for a wave of federal court rulings that struck down state marriage bans and led to a 2015 Supreme Court ruling giving same-sex couples the right to marry from coast to coast.
ETA: Sir Peter Hall, founder of the Royal Shakespeare Company.

Birthday greetings and felicitations

Sep. 13th, 2017 07:33 am
onyxlynx: Festive pennants in blue & purple with word "Birthday" centered. (Birthday)
[personal profile] onyxlynx
 to [personal profile] madshutterbug !    Hope you're OK and that you and yours are drying out.

Requiescat in Pace

Sep. 11th, 2017 11:05 pm
onyxlynx: Some trees and a fountain at a cemetery (A Fine and Private Place)
[personal profile] onyxlynx

Loose Ships Sink Lips

Sep. 11th, 2017 07:17 pm
onyxlynx: The words "Onyx" and "Lynx" with x superimposed (Default)
[personal profile] onyxlynx
  • I've seen half of It. I think horror movies in theaters are off my menu. There was a that's it point. I've mostly read the book, although I don't remember the scene.
  • Medical fu.
  • We had one of those stealth thunderstorms. Two guys on the bus were pointing at their iPhone, saying "There's a thunderstorm." (I did not say, guys, the windows are wet and there was a rumble a minute ago.
  • There's an alternate universe in which when we returned from oveseas, Dad got assigned to the Presidio or the Oakland Army Base and I grew up here and get all the arcane references in the Chronicle.
  • Where is that stupid phone bill?
  • Taiko drumming...
  •  

In Memoriam

Sep. 11th, 2017 11:18 am
onyxlynx: Some trees and a fountain at a cemetery (A Fine and Private Place)
[personal profile] onyxlynx
 110 Stories by John M. Ford.

The church across the street is mostly rebuilt
.  Which reminded me of the Burger King on the corner, which had been way back an Automat, and the Manhattan Savings Bank, which had a grand piano which sometimes got played in the afternoons.

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