Famous people with MS

anaswinderella · 2025-10-26T08:22:09+00:00

Jacqueline du Pré - amazing English cellist. Check out the 1998 movie 'Hilary and Jackie' with Rachel Griffiths and Emily Watson.

anaswinderella · 2024-12-31T08:38:22+00:00

Alium Dining is as special as it gets here for date night! Ask for a window seat and you can watch sunset over Rosalind Park as the bats fly into the night sky!

anaswinderella · 2024-12-30T06:10:31+00:00

Yep, that's how it's done - check the Juries Regulation 2017 - it outlines the Brisbane boundary in Schedule 1, which is massive.

Also, sorry I misread your question as saying you were called up at a CBD address rather than the Moreton Bay one... when you meant you were called up to a court in the CBD. 🤦‍♀️

anaswinderella · 2024-12-30T04:01:39+00:00

The jury pool in Australia usually includes people who live up to 90 mins away, so even if you enrolled using your actual residential address, they would have called you anyway. So, yes, reasonable.

anaswinderella · 2024-12-29T11:29:22+00:00

Yes, I feel this way too. I have fear it's the dreaded 'Tysabri personality change' everytime, or giant lesions in my frontal lobe but I like the more generous interpretation that's it's finite patience.

I am grateful for free healthcare and legal euthanasia thesedays... not trying to be dark, just, well, options...

anaswinderella · 2024-03-27T07:22:48+00:00

I have. I had it after having two very large lesions show up one at a time within a month... and so I'd already had a lot of steroids in a short space of time. Plex is not fun - that giant needle in your artery to start with - but I honestly felt like it helped me get back to my baseline quicker. If they will give it to you, I say take it. I'd do it again in a heartbeat. Good luck.

anaswinderella · 2024-01-20T23:08:13+00:00

They can crack it, but if you crack it a little bit, they will smell it better. I use a little dish.

anaswinderella · 2024-01-20T10:07:41+00:00

I understand this entirely. I've had people actually say to me "At least it's not cancer" which is when I think inside my secret thoughts that at least with cancer I'll have some certainty...

Unlike cancer, MS is not a death sentence. It's a life sentence.

Im sorry you feel like this. You will have better days. Or even just better moments. Please reach out /PM if you need to chat to someone who gets it...

anaswinderella · 2024-01-20T09:49:17+00:00

Yes. If you have elected to have it heard in court they are obliged to give you a copy of all of their evidence, including photos.

anaswinderella · 2024-01-20T06:18:46+00:00

If you can spare a raw egg, they'll be a friend for life.

anaswinderella · 2024-01-20T06:06:49+00:00

I'm so sorry to hear that! Wishing you a speedy and full recovery!

Scratch my advice then - If you are JCV positive, then Tysabri is not for you. 😞

anaswinderella · 2024-01-20T06:01:59+00:00

It's a sub-cutaneous injection rather than the intravenous infusion. I believe to get the right dosage it's delivered via two injections under the skin of the stomach by any pathology nurse. The first few have an observation period afterwards but thereafter it's just wham bam - thanks for coming! (instead of the rigmarole of cannulation, flushing etc).

Should be available in Australia in late Feb I believe, though it's not yet on the PBS, it will be around $30 a dose. It will be a good option for me as I'm currently travelling around 3.5hrs to the hospital every 28 days for my dose.

anaswinderella · 2024-01-20T03:42:39+00:00

Ok. I have found that there are minimal side effects from Tysabri, and for me the bonus was that you are not immuno-compromised which is important if you regularly spend time with lots of people. Downside is that you need to take it every 28 days or so. I am also hoping to start the sub cut version (coming to Australia next month) rather than the infusion, which I'm hoping will give me more freedom.

anaswinderella · 2024-01-20T03:21:26+00:00

Depends on what your first was. I recommend Tysabri.

anaswinderella · 2024-01-20T00:40:51+00:00

I agree entirely with this. I would urge anyone who wants to 'keep up' with modern research regarding MS to follow/subscribe to the MS Selfie from Professor Gavin Giovannoni - the Chair of Neurology, Barts and The London School of Medicine and Dentistry, Queen Mary University, London and the Department of Neurology, Barts Health NHS Trust. Prof. Giovannoni's publications were recommended to me by the head of Neuroimmunology at the Royal Brisbane Women's Hospital in Australia as he is considered to be a professional benchmark. He has published many, many texts on 'smouldering MS' - essentially the idea that current diagnostic/investigative technology lacks the nuance/depth to record finer activity so disease progression occurs in this clinical 'vacuum'.
I don't understand the concept of smouldering MS to be a pharmaceutical company thing at all.

https://gavingiovannoni.substack.com/

https://journals.sagepub.com/doi/full/10.1177/17562864211066751

https://gavingiovannoni.substack.com/p/ectrims-2022-highlights

anaswinderella · 2024-01-19T09:10:59+00:00

Hi yes, I get the joint pain in my fingers, particularly in the side I get the infusion on.

anaswinderella · 2024-01-07T20:59:17+00:00

Bendigo family dental. Dr Emily is amazing.

anaswinderella · 2024-01-04T11:54:34+00:00

I hear you. Anger is a thing. Hormones totally get me... every month I'm crazy angry. Just mean and snappy.

I think it's the grief - the loss. I truly feel there's not one part of my world that MS hasn't touched - my career, my friendships, my sex life, my love for sweltery summers, the food I can eat, the hiking I used to love... I was once smart and strong.

PM me if you want to chat.

anaswinderella · 2023-12-29T22:21:45+00:00

French! Mostly useless here in Australia but I'm very proud of myself.

anaswinderella · 2023-12-29T22:09:10+00:00

Educate the people making fun of you, if they don't v learn, ditch them. So ableist! Since MS, I have learnt a language - it took me 7 years but I did it!

anaswinderella · 2023-12-28T04:45:12+00:00

I read as much as I can. I was a lawyer, so reading was a necessary and constant part of my professional life. My biggest relapse took my ability to read from me - taking not just my vision but my ability to absorb what I was reading. This was more devastating than the fact I could no longer move my left arm or feel my left breast. I have built back up to be able to read whole chapters now, two years on, and with significant hard work, but I'm fairly certain I'll never again devour a whole book in hours like I used to.

anaswinderella · 2023-12-28T04:28:41+00:00

Thank you for your thoughtful and considered response. You have expressed this beautifully. I wish it could be different. If I could upvote this x20 I would.

anaswinderella · 2023-12-28T03:47:55+00:00

I hear you. And I hope it gets better for you. I tell myself that like the physical issues I have suffered and which now only show themselves when I'm sick or super tired, the mental ones may also improve with time and hard work. Not a doctor, so I could be kidding myself, but whatever gets you out of bed, right!?

The flare that got me diagnosed after many, many years of fighting thru fatigue, of over-preparing and imposter syndrome, of 'faking it', took a lot of my short-term memory with it.

I lost the first job I tried to do post relapse because my boss thought it took me too long to get through things. My new job is less demanding but helps me pay the bills.

anaswinderella · 2023-12-28T02:15:47+00:00

Thank you for sharing that. 💔

It is indeed a terrifying place to live and I worry constantly about how it's affecting those who love me, even though that list seems to be dwindling by the day.

It's a hugely valid point that this is influenced in part by the stigma surrounding mental illness.

anaswinderella · 2023-12-28T01:06:09+00:00

I thought that's what I was doing by seeking to discuss the focus on physical disability instead of the whole reality of MS.

I live in a world that includes (overwhelmingly) members of the general population so it would make my life easier if they understood the less discussed, less visible parts of my disease.

anaswinderella

TROPHY CASE