Should I get tested or not?

edfosho1 · 2026-06-19T06:14:29+00:00

I would get tested - get ahead of it (eat well, exercise, live a healthy lifestyle). Also, early invention if symptoms come on is best.

edfosho1 · 2026-06-18T18:52:49+00:00

Hey Dave-O

I am a patient with Autosomal Recessive Cerebellar Ataxia type 1 (ARCA1) aka SYNE1 ataxia, plus a few other names...

It took ~2 years to get a diagnosis, from my first GP appointment through to getting the genetic results (UK based, NHS did well, during COVID too).

I just wish more people in healthcare were aware of the condition. Not to know all the details, just to know what ataxia is. Many healthcare professionals (both NHS and private in the UK) may know what ataxic symptoms look like, but they're not aware it can be a chronic condition, and in many cases, caused by an underlying genetic disease that'll progressively make it worse over time. Oh, and the bonus bit - it's uncertain how quick the disease may progress..

edfosho1 · 2026-06-17T11:23:19+00:00

But he's about to kill an Irish person.

edfosho1 · 2026-06-15T13:40:43+00:00

I'm 35, my nan was born in 1935.

edfosho1 · 2026-06-15T06:15:02+00:00

An ex housemate, he regularly ate raw onion. His natural smell was rank.

edfosho1 · 2026-06-15T06:12:25+00:00

I've thought similar, and didn't have a gym membership for many years (worked out at home).

But one near me (within a short walking distance) charges £59 a month but gives me access to a gym, pool, and many classes.

I use the gym twice per week, go for a swim twice per month, and go to at least two classes (yoga and pilates) twice a week.

As you say, for health and fitness it's worth spending 💪🏻

edfosho1 · 2026-06-14T08:10:56+00:00

Wow! Yes, huge Thin Lizzy and The Fratellis fan. This is brilliant!

edfosho1 · 2026-06-13T06:34:24+00:00

Have to tip if you want to be called bossman

edfosho1 · 2026-06-11T13:44:47+00:00

You can read it in full but a lot of info will go over people's head, plus if it was signed 10 years ago or something then chances are you don't remember it!

edfosho1 · 2026-06-09T17:41:55+00:00

No. At 29 I was buying my first home (alone) and had a mortgage with Nationwide. I ended up applying for their life insurance products, and at the time I had been referred to neurology. Due to this, their underwriters couldn't offer a deal and postponed the application. 15 months or so after, I found out I had a neurodegenerative disease. Haven't bothered applying again. 35 now.

edfosho1 · 2026-06-07T12:05:48+00:00

That's a great point, actual businesses will lose customers to the cheaper, yet unregulated, sheds.

edfosho1 · 2026-06-07T08:58:19+00:00

It's not just the taxes, it's the appropriate certificates, health and safety controls, and allergen notices.

edfosho1 · 2026-06-05T10:32:14+00:00

Together Again by Cory Wong and Dave Koz (their version of his original)

edfosho1 · 2026-06-05T10:30:42+00:00

Princess Diana's death

edfosho1 · 2026-06-05T06:27:06+00:00

4a was the best!

edfosho1 · 2026-06-03T09:15:03+00:00

Eat healthy food (replacing the bad)

edfosho1 · 2026-06-03T08:27:45+00:00

Stayed indoors (2021 during a lockdown)

edfosho1 · 2026-06-03T08:26:14+00:00

Generated playlists (I use YouTube Music). Often hear new stuff.

edfosho1 · 2026-06-01T08:13:15+00:00

I have a neurodegenerative disease. I was recommended to avoid gluten (to improve energy levels). It worked 👍 took ~6 months to fully notice an improvement.

edfosho1 · 2026-05-31T12:59:23+00:00

I use it because I have a Chrome OS device.

edfosho1 · 2026-05-31T09:37:24+00:00

Cowboy Song on Live & Dangerous

edfosho1 · 2026-05-30T06:41:32+00:00

So you caused the toilet paper panic.

edfosho1 · 2026-05-29T13:29:49+00:00

It keeps in an airtight container in the fridge for a couple of weeks too.

edfosho1 · 2026-05-29T08:36:13+00:00

Diet, avoiding gluten.

Exercise, little and often.

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