Paul met Debbie

Good to hear that you reacted moderately well to the second shot, Jenny. Tylenol (we call it paracetamol) is the preferred pill to take on occasions like these indeed.
Now you have taken this hurdle, still be careful out there!

Indeed this is good news. Having one stop-codon mutation myself, I have been following several studies with read-through compounds with great interest, like aminoglycoside antibiotics and Ataluren (ptc124).

Unfortunately, although promising in vitro and in animal models, in vivo phase 2 studies have not been successful so far. But I think this is…[Read more]

Thanks for sharing, Jenny. Hope you will react well (few or no symptoms) to the second shot. And still remain equally careful after it.

Oh what a pity, Tim 😉. Well, let’s paint a slightly broader picture then: fortunately, if we go back in the time-line for just a half million years more, many of the Anthropoidea stayed in the beautiful forests and trees in Africa and Asia until today. And even Kenya still has some coastal forests left where they live, going inward, in harmony…[Read more]

I completely agree with you. So why is it so frustrating when the rest of the world doesn’t feel that way? Probably because, in some way, you take it personally.
And of course they mean it personally, but you are not obliged to take it that way. It takes two to tango (as you of all people will know).

You are respecting the freedom of others to h…[Read more]

Once I had to.

Friends persuaded me to join them on a camping trip in France. I hate camping, but against my intuition I thought this might be a good challenge for me. I was wrong (that is to say: my mind was).

We had a little caravan, and for the first few days everything was not so bad at all.
Then, one night, we woke up because our little…[Read more]

Oh, I am getting utterly nostalgic when you paint a picture like this, Tim.
Swinging from the east African trees… if only we would have stayed there.
What a paradise!

I couldn’t become less keen on large social groups – I am already as unkeen as I could be. And always have been. I don’t think that equals to introversion though. At home and in good (small) company I am very sociable and extrovert. So it depends more on the quality and quantity of the group. I prefer to have “real” contact and find this to be…[Read more]

You are right of course. It can be frustrating, even patronizing, infantilizing. But only if you choose so. Being right is not ultimately important in life. Beyond right, there is truth. And it goes beyond all stories, even the right ones.

These are all perfect examples of how the mind works and talks with concepts, that are abstract and have no…[Read more]

It is indeed chaotic, which is also caused by a lack of a clear purpose.
For instance: (in the Netherlands, but this will probably go for other countries as well)

– If we want to minimize covid deaths and pressure on ICU, we have to prioritize the eldest people, those in the care homes and the obese men of 50 years and older. They account for…[Read more]

I answered most of this in https://cysticfibrosisnewstoday.com/forums/forums/topic/is-your-life-still-changing-for-the-virus/

I can completely subscribe to your evaluation, Jenny.

But I also think we should look at the emerging of the virus as a natural phenomenon. Viruses are a very ancient form of “life” on earth, they can infect all…[Read more]

Here in the Netherlands we came down from over 12000 new infections per day half December to about 4000, due to a strict lockdown (no schools, no shops, no bars, restaurants, musea etc, only 1 visitor allowed per day) and a curfew (21.00 – 06.00 h). Fortunately we are still allowed to walk the dog in the evening.

Now it seems to stabilize at this…[Read more]

Thanks Raphaël for sharing your experiences with Trikafta!
I have yet to start with it, perhaps later this year, so it’s good to hear some feedback from those already on the drug, espicially because we have comparable lungfunctions.
I have always been quite inventive in finetuning the dose of medication to my own needs, so I can understand your…[Read more]

The Art of Coughing

I rumble with affection
It’s truly like an art
With natural perfection
A few minutes apart.

DaVinci, Rembrandt, Shakespeare:
They are like amateurs
Compared to what I do here
A sad bunch of messieurs.

“To breathe or not to breatha”
We know not of that phrase
And the Mona Sneeza
Has never come our ways.

I miss The Magic…[Read more]

… you look for new forum topics on Cystic Fibrosis News today

Are you advertising your kids😀? Seems you are doing quite a good job as parent! Must have been a great thing to get this wise answer from your daughter.
When I look at the children of my sister, I am always amazed how mature they can be even from a young age on, much more than I remember myself being when I was that age. And sometimes it’s the…[Read more]

Oh, I am pretty bad at multitasking and besides I hate it, everything suffers mostly.
And with treatments I also prefer one at a time, with some pause in between if possible.
That makes it also more easy to assess the effect of the treatment.

Fixing symptoms is often the thing we have to resort to with cf, having no real cure, but I always try to…[Read more]

Ah, and these are nice questions to answer!

What a great name!

1. There is always at least one alternative – it’s outside the box
2. Don’t think life, live it
3. Trust your intuition
4. Nature is not what surrounds me – it is me
5. My doctor knows abstractions – only I know me
6. I know nothing – going from there is freedom
7. Don’t follow rules, just be good
8. Reality is outside the mind – tidy up, let go,…[Read more]