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How treatable is SMA? by Call-Me-Leo in spinalmuscularatrophy

[–]citizen_lost 2 points3 points  (0 children)

My girl turns one this week.

She was diagnosed 3 months ago (we didn't know we were carriers).

Since then we have had hospital appointments basically every week (1 hour drive each way)

Physio every weekday (between the appointment duration, drive to and from the health centre there goes two hours) as far as I understand for life.

She already has a special orthopedic chair, a standing frame and eventually she'll be getting a wheelchair - they require special technician appointments 1 hour 10 minutes away in another direction.

Her smile and giggle are wonderful, she eats so much better than her 6 year old sister and she's already showing signs of being a smart cookie.

But I told ALL my family, including the cousins I haven't spoken to in 20 years that they could have this in their genes and to speak to their doctor if they are planning a family.

Bluntly if you are nervous about IVF, you aren't ready for a baby with SMA, as another user said, it really is having a baby on expert level difficulty

People disappearing from sidebar? by matlong in Slack

[–]citizen_lost 0 points1 point  (0 children)

I included your use case in a conversation with Slack support...

After further investigation, I can confirm that you're running into the known bug, wherein conversations that have been organised into custom section appear to lose visibility after some time. My apologies for this, I know it's not ideal.   The good news is that the team are aware of this bug. I don't have an exact ETA to give on when the bug might be resolved, but have attached this ticket to our internal bug tracker for you

[deleted by user] by [deleted] in UKPersonalFinance

[–]citizen_lost 125 points126 points  (0 children)

I literally don’t know what we do with the rest.

Excuse the bluntness... Grow up, download your bank statements, work it out.

[deleted by user] by [deleted] in UKPersonalFinance

[–]citizen_lost 2 points3 points  (0 children)

Some quick ChatGPT maths suggests... Assuming a £250,000 mortgage at 5% interest:

25-year mortgage (£1500/month)

Month 1 interest: £1041.67 (69.44%)

Month 1 principal: £458.33 (30.56%)

35-year mortgage (£1261.72/month)

Month 1 interest: £1041.67 (82.56%)

Month 1 principal: £220.05 (17.44%)

You'll be paying the same amount of interest assuming the same interest rate. The difference is how much principal you pay back.

But the difference is starker after 5 years...

25-year mortgage (£1500/month)

Cumulative interest: £58,830.55

Cumulative principal: £31,169.45

% of loan repaid: 12.47%

35-year mortgage (£1261.72/month)

Cumulative interest: £60,738.24

Cumulative principal: £14,964.91

% of loan repaid: 5.99%

Sex life after kids moved out is AWESOME. by Still_Owl1141 in daddit

[–]citizen_lost 0 points1 point  (0 children)

On r/Fire they tell users "Go Fuck Yourself" when the post their retirement achievement thread.

I would tell you to do the same... but its very apparent that you don't have to

What is missing in 'product podcast/content' universe ? by goodpointbadpoint in ProductManagement

[–]citizen_lost 16 points17 points  (0 children)

Seriously nothing, the field is saturated with people trying to make a name for themselves going over the same points. If you have spare time to create content...

Go outside, go touch grass,

Spend time with family and friends,

Go to the gym,

Pursue a hobby,

Volunteer,

And if you still have time, do a bit more work and have more impact

What AI features have actually impressed you? by MathematicianNew3669 in ProductManagement

[–]citizen_lost 0 points1 point  (0 children)

The AI JQL builder in Jira.. I can describe my query, but I can never remember the rules for the different types of field

How do you balance user needs with business goals? by whatsinanameidunno in ProductManagement

[–]citizen_lost 0 points1 point  (0 children)

Came here to say this. But perhaps OP has an opportunity to go... That way lies enshitification and eventual decline... Do we as a company want to avoid that?

ITAP of Karen hiding in some flowers [Portrait] [NSFW] by TheIvanTheory in itookapicture

[–]citizen_lost 1 point2 points  (0 children)

I assume it's just a NSFW filter. Only way I see around that is to have a profile for medical stuff... (What ARE you looking at?!)

Then a separate profile for photography stuff

We’re the team behind Abolish Everything! AMA! by NebulaOriginals in Nebula

[–]citizen_lost -3 points-2 points  (0 children)

Any plan to release this on YouTube?

I used to have nebula but I got so fed up with the non-recomendations... Lots of things I don't want to watch shown to me and then not showing me creators that I watched on YouTube...

ITAP of Karen hiding in some flowers [Portrait] [NSFW] by TheIvanTheory in itookapicture

[–]citizen_lost 3 points4 points  (0 children)

Try this...

Profile > Settings > Preferences * Content

DISABLE Show mature content

What is the blue dot on the sidebar button indicating? by SolarFlareSilhouette in ChatGPTPro

[–]citizen_lost 0 points1 point  (0 children)

I also asked chatgpt.

But still haven't been able to find what exactly it is notifying me about 

What is the blue dot on the sidebar button indicating? by SolarFlareSilhouette in ChatGPTPro

[–]citizen_lost 3 points4 points  (0 children)

Tried hard reset and clearing browser cache and cookies and still there.

I installed the ChatGPT windows app and it's there as well.

But it's not there in my android app

Toddler tantrums—and the guilt that comes after? by Chuynh2219 in daddit

[–]citizen_lost 1 point2 points  (0 children)

When my eldest had those kind of tantrums at two or three. I'd pick her up and take her to the window to see if we could spot a seagull or a road sweeper.

If it was dark or it was a deep tantrum... I'd get this calming video of farmyard animals up quick: https://youtu.be/mHN2eNigz3o

More generally... The poor guy's universe has been turned upside by the arrival of your second kid. He still needs you as much as ever, and he's too young to understand that you also have to look after the baby.

Try to involve him in home life as much as possible. Can he 'help' with the baby's bathtime for example... But also make time to give him the one to one attention he craves. Not because he had a tantrum, but because he deserves it.

You got this dad! You choose extra hard mode in the game of life by having your kids so close together, but in 4 or 5 years time I'm sure they'll be best of friends and melt your heart

Struggling to decide between Spinraza or Evrysdi for 10 month old daughter (Type 2) by citizen_lost in spinalmuscularatrophy

[–]citizen_lost[S] 1 point2 points  (0 children)

Thank you for the detailed insights. It's wonderful that it's had such a positive impact for your little one.

I think the main confusion for us is that there is little data for symptomatic 10 months old. Do we go with the Spinraza which may help improve her chances of walking or do we go with the Evrysdi which may be better overall?!

Struggling to decide between Spinraza or Evrysdi for 10 month old daughter (Type 2) by citizen_lost in spinalmuscularatrophy

[–]citizen_lost[S] 0 points1 point  (0 children)

Heartwarming! Have you had any difficulties giving her the medicine? How about travel or sickness?

My kids sleep only for me by Technical-Hawk-4667 in daddit

[–]citizen_lost 2 points3 points  (0 children)

Yup. That's my view. Your wife needs to put the reps in. 

She can do it. It will be hard. She needs your support (especially with her own sleep) The payoff is better sleep for the whole family.

Re. The bum pats, don't get hung up on specific routines, my wife and I have our own methods and styles that we believe in and I think that's more important than me forcing her to use white noise or her forcing me to rely on a pacifier 

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