Long time no see! :)

[Paula]

Hi hunni. I’m so sorry you’re still a way away from real answers. However, sometimes, a different face will think of something go that hadn’t been considered before. I know when I saw my new neurologist, he flagged up that sleep apnea could contribute to the pressure on my brain - I was tested and have the condition!

As for your previous doctor, ‘more training’ may mean he wants to specialise more, rather than he wasn’t fully qualified….

[Suzi]

Hey hunni, lovely to have a catch up with you. Can you write a really direct blunt list of questions you want answered and maybe see if your lovely Mum or a trusted friend could go with you to get the answers you deserve?

[Techie]

Hey.

Maybe he wants to specialise more, yes, but some of the things he's said, combined with his age - clearly he's a junior consultant at the start of his career, and I can't help wondering why they gave him a case of this level of complexity. As for someone coming in with me? Can't because of the pandemic, but even if I could take someone in with me it would make me uncomfortable, honestly. Ive written several lists of questions for them, some of which have been answered but most have not. Im just hoping this new one can help a bit more at this point.

Cheers guys, and I hope all is well.

T

[Suzi]

Keep on fighting love. If you struggle cognitively then you can have someone with you. I know because I don't normally take in what people say to me in appointments so I take Marc in with me....

[Techie]

Hello there!

Well, I had the appointment with neurology - it went fantastically well. Setting me up with an appointment with orthotics at Rookwood and theyre contacting my surgeon so that I can get an opinion on whether the tendon transfer operation is still on the cards. What's past is prologue, so we'll see what happens next. Its such a relief - today is the first day in a long time that Ive been happy to do nothing. I went in by myself as always, did fine.

I hope everyone is doing as well as they can be, and I'll speak to you soon. Love and light.

T x

[Paula]

That sounds really positive!

[Suzi]

Well done for going in and talking them lovely! So glad you're being treated well and being listened to and taken seriously..

[Techie]

Hey.

Well, I have a fitting for a wheelchair coming up which I have mixed feelings about, honestly. At the end of the day, its going to be helpful if I need to go long distances, so that's good, focus on the positive, etc. My appointment at Rookwood is now with Rehabilitative Medicine rather than orthotics - hopefully its the same sort of thing though. Just thought I'd drop in and update y'all.

Hope all is well, speak to you soon.

T

[Paula]

I promise you, from experience, that getting a wheelchair will open up so much for you. I get the mixed feelings, but it’ll be a life changer

[Techie]

OK!

Well, first of all, thankyou to everyone for the kind words regarding their experiences with wheelchairs - helps a lot. Also, had an appointment at Rookwood today and finally things are starting to move forward. Ive got the closest things Im getting to diagnosis, I think - Progressive Spastic Paraparesis, caused by a spontaneous genetic mutation, basically HSP without the H for hereditary! The treatment is going to be Botox in the first instance, possibly followed by an orthotic splint, with surgery as a fall back in case nothing else works. So...finally a PLAN!!

As you can imagine, I'm very happy that things are moving forward. I hope everyone here is doing well, and I'll speak to you soon.

Love and light. T xx