u/PhilosopherSea3291

hello all I am new here and very rarely talk about my dystonia so I'm looking forward to discussing this strange and unfortunate condition with other sufferers.

a quick overview of my story - diagnosed with focal dystonia (DYT-1) aged 11 which affected my right arm only. tremors, hand cramps etc. had to teach myself to write left handed. age 31, started noticing my head tilting to the right. not much later right trunk started tugging downwards. was confirmed as generalised dystonia and a bit of an anomaly given the 20 year period that it plateaued. started quarterly botox injections and put on trihexyphenidyl. botox provided pain relief but not much postural correction, pills were anxiety inducing and affected ability to work so came off drugs. age 37, speech began to deteriorate, slur words, bite lips and tongue.

i am now 44 and speech deterioration has definitely been the most frustrating aspect of this condition, however I'm in significant pain when botox starts to wear off (around 10 weeks post jab). my trunk is heavily twisted and I walk not quite at a right angle, but with upper torso heavily leaning to the right.

my neurologist is heavily promoting DBS and while they cant guarantee its uplift they believe it will greatly improve most aspects of my condition with the exception of speech which is under tested at DBS. I am still a bit reluctant to have surgery - brain surgery no less - as I've never been operated on. however the condition is now at a point where quality of life is becoming greatly impacted.

at my last appointment I was prescribed baclofen but I am not keen on taking meds after prior experiences especially ones that require a gradual increase/decrease.

so I wanted to see if any others here have had DBS - has it greatly improved your symptoms? likewise has anyone tried baclofen and did it help? any issues coming on/off the drug?

separately I'd be interested to hear of any alternative treatments you might have tried - I'm looking at things like hydrotherapy and acupuncture as palliative treatments.

thanks for reading and look forward to your thoughts.

Any tips for getting rid of weed seeds in compost? I sieved about half a ton of compost that had been cooking for a year mainly to get rid of twigs however now all my potted plants have loads of weed seedlings. I guess it didnt cook hot enough? Any suggestions on how to treat my finished pile?

Hi I'm the owner of a beautiful Himalayan boy called Harpo. He's 13 years old and is like a son, I've had him since he was 6 weeks old.

Last week whilst petting him I noticed a mass beneath his skin towards his back above the spine. It appeared to have developed suddenly as this is a typical area I would pet him and it was the first time I had detected it. It was soft and moveable about the size of a jelly bean or chewy sweet.

I took him to the vet last week and they performed an FNA test. I just received the phone call from the vet saying results were inconclusive but they suspect it is a soft tissue sarcoma which is obviously bad news and heartbreaking.

However, I explained to the vet that about 3 or 4 days after the FNA, the mass has completely disappeared. I have checked Harpo thoroughly and cannot feel the lump anywhere.

The vet thinks this is unusual but potentially good news and from my little online research I can see that FNAs can potentially puncture cysts and benign lumps. Given the FNA was not conclusive it is possible the soft tissue sarcoma was a misdiagnosis but I might just be trying to make myself feel better.

Have any of you fellow owners experienced anything like this? I am going to take him in tomorrow for the vet to check him out and we will then decide what to do.

Not really sure what the purpose of this post is - maybe I just need some reassurance as I'm fearing the worst.

Would value and appreciate any advice.

Thank you. ❤️

My wife bought me a ninja creami and I would like to try and make coffee ice cream. I don't have an espresso machine and I only drink a filter coffee - mostly pourover or aeropress.

Do any of you have experience making ice cream using pourover? Would you be able to recommend a recipe?

Thank you so much!

I have an ayaneo pocket air mini and I'm really enjoying soh. However I haven't found a good setup both in terms of mapping the controls or gui mods for the cbutttons. Are there any you can recommend?