VoidCat
Use any and all pronouns including neo and it/it's
thats kinda how i judge quality of life. How often someone is happy overall. Does she make a happy face often?
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Growth Attenuation
- Thread starter VoidCat
- Start date
I have said exactly the same thing about abortion as I have said about this. The government should stay out of it, and it is a private personal matter between the patient (or guardian in this case) and their doctor.How stupid. I guess you'd better shut up about abortion unless you've had one, right?
Yeah she’s generally pretty chill these days - ie she has happy or relaxed faces much more often than a stressed face or tense tone and crying. She likes the sun in her face and light breezes. She likes being bounced in our knee and all encompassing cuddles. She likes being in water - if it’s really warm… She also likes it when we do burn outs on gravel in her wheelchair or being taken over bumpy grass.
We make sure we do the things she likes as often as we can and avoid the things she doesn’t enjoy just as often wherever possible. I guess that makes a reasonable life in anybody’s books.
VoidCat
Use any and all pronouns including neo and it/it's
You just answered how happy she is. Overall according to you she is generally pretty chill and is happy or relaxed.
VoidCat
Use any and all pronouns including neo and it/it's
@Kiwi Jenn
I think thats what this boils down to. quality of life and if growth attenuation helps with that. The question is what is quality of life. To me an indicator of it is how happy someone is. Which is determined by how often they are happy. You also answered how you think this treatment has helped with her happiness
Subduction Zone
Veteran Member
Wow! Where did that come from? Nor is that an apt analogy.How stupid. I guess you'd better shut up about abortion unless you've had one, right?
VoidCat
Use any and all pronouns including neo and it/it's
Subduction Zone
Veteran Member
I understand how that can be because of experience with my father. When he was in pain he would grind his teeth very loudly. It got on my nerves because I could feel his pain through it. For most of the time that I added to his care I could quickly find the source. Most of the time I only had to do range of motion exercises for his legs. Other times I had to reposition him in his wheelchair. I became an expert at both of those. He would quickly go back to being relaxed. That was quite often the first think that I had to do for him every day. Then after that I merely had to watch his face to see when it needed to be done again.
Yeah I guess. Of course, naysayers would argue she’d have potentially been just as happy without the growth attenuation. But of course, she’d have still been seizuring 200 times a day for a start…
VoidCat
Use any and all pronouns including neo and it/it's
I'm autistic. Some folk say I don't have quality of life. because I'm not always as capable as some folk. Sometimes I'm nonverbal. I get meltdowns and shutdowns sometimes. I wasn't potty trained completely till I was 10 years old. But I'm happy. I feel I have a good quality of life. Even tho I'm disabled.
possibly. Now there is no way of knowing that. Which is why I wish there was more studies to let us know if such things like her lack of seizures are because of the hormone treatment or not. And studies on those families like yours who have gone through this. upon reading more info this treatment is becoming less and less rare. It'd be good to do more studies on this to see how it impacts quality of life. I also think studies interviewing non ambulatory disabled folk that aren't as cognitively disabled as your daughter and can communicate and haven't been through such treatment would be good to interview on their thoughts. As some folk are bedbound and can communicate. Surely such a group would know if something like that is helpful in regards to understanding quality of life. Because while their situations are not the same they are similar.
VoidCat
Use any and all pronouns including neo and it/it's
@Kiwi Jenn without studies everything you say is only helpful to a point. Just cuz something may have done no harm in your daughters case doesnt mean it wouldnt negatively impact another. And you may be thinking some positives you have are due to the treatment but are not like the lack of seizures. Hopefully it did help with that. But correlation does not equal causation. Did a doctor mention why the treatments helped with seizures if they did at all? any theories even if not known?
Subduction Zone
Veteran Member
When my father was still speaking a bit I would often ask how he was doing and he would almost always say "Good". He always ate well, he enjoyed going outside. He still seemed to enjoy life and that was good because he had a "Living will" that basically said that we were not supposed to try to save his life as we did when his accident happened that put him in a home. When an emergency hits people forget about things like that. So he still had ten pretty good years left after the event.
I would try to prolong the life of anyone that seemed to be enjoying life.
VoidCat
Use any and all pronouns including neo and it/it's
That may be a good thread for me to make. What is quality of life? I'll get onto that
VoidCat
Use any and all pronouns including neo and it/it's
I made it Quality of life
I don’t really think in terms of “quality of life”, even for myself. I personally don’t have the life I would have chosen for myself, but that also doesn’t make it ”poor quality” so I find the concept unhelpful - it’s asking for a judgment that I’m not sure someone can easily make for themselves let alone for someone else. But at the end of the day if you’re happy or even just ok more often than you’re not, then that’s a win. I prefer to focus on giving Charley the best life I can will she’s with me.
I also try to help boost the lives of some of our similar families. For example, I design public bathrooms for those with high and complex care needs (including change table and ceiling/wall mounted hoist) and am building a nationwide network of these rooms to allow those that can’t normally leave the house to get out and about with their families.
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Charley was on a massive cocktail of anti seizure meds prior to the Estrogen patches. None of them impacted her seizures. Within 3 days of the first (low dose) patch they stopped. Like, dead in their tracks stopped. Her high tone also lowered within those three days, as did her eye rolling. Can’t get clearer than that for me.
Seizures can be brought on by lots of things, including pain. High tone can be painful. Estrogen topically applied can loosen the tone of smooth muscle tissue (it’s used sometimes on the throats of asthma kids so that when an attack comes on the muscles can’t spasm as hard). What we learned through Charley is that it can also loosen skeletal muscle and connective tissue when delivered through a skin patch (it doesn’t work with oral dosage). The tone lowered, lessening her pain, taking away the seizures (and the eye rolling). That’s the best guess that I’ve come up with. Drs haven’t disagreed with this theory - but also haven’t researched it (though I’ve requested this multiple times)
VoidCat
Use any and all pronouns including neo and it/it's
That is amazing. I always thought there should be more changing tables for disabled folk in bathrooms but also that those changing tables should be in a stall so to allow privacy to adults who may not be ok with folk they don't know seeing them be changed. Unfortunately a lot of changing tables arent made for disabled adults, are only in the women's restroom, or aren't in a bathroom stall so there isn't privacy.
Check them out if you’d like - our rooms are next level! I design everything - from layout to artwork.
Changingplaces.org.nz
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This was an informative video! Thank you.
The graphic below also confirmed my experience with my regular trips overseas to England that the U.K. is way, way ahead of the U.S. in needful innovation.
On my last trip over (in May) I was pleasantly surprised by the way the U.K. deals with public restroom security for individuals with the creation of wide open restroom areas having individually locking, floor-to-ceiling stalls that are not gender-specific. I'm convinced that the conundrum we face with this issue here in the U.S. is more politics-driven than anything else, and I believe that the commendably "keep calm and carry on" Brits have tackled the issue in a very common-sense way. Next time I'm over there, I'm going to make a point of seeing what they're doing with public restrooms for the disabled.
Cheers on the work you are doing there in New Zealand. I saw that the graphic I screenshot from your video link was created in 2019. I hope that my own country (U.S.) has since started to catch up a bit with the U.K. (and a few other nations).
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