-
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
-
-
That's awesome! I'm so happy you have some answers and a plan...
-
Hey there! :)
Sorry I havent been around for a while, loads going on here - most of it medical. I had my first round of botox today, which is kinda cool - I just hope it helps. Got a neuro-physio assessment coming up to see if I can do any exercises/stretches now that I have botox on board, or whether my feet/legs will tolerate a splint. Both of which would be helpful. The issues with the wheelchair have been sorted, thankfully - just had to practice a bit and get my head around how it works.
Started an online copywriting course as well - Ive always been good at writing so I thought I'd try squeezing some money out of it if I can. Its going well so far, been doing it for a few weeks now, so I maybe able to actually do something job-wise which would be very cool indeed, probably working from home for the foreseeable.
My physical condition has gotten worse - its starting to affect the right leg more now - but I guess that is to be expected given that its a progressive condition. Mentally I'm doing pretty well - just keep taking the pills, and when I have a bad day have to remind myself that tomorrow will be different by pure definition.
Anyway! I hope everyone is doing well and I shall speak to you soon. Love and light, guys.
T x
-
Sorry you're struggling with declining health love, but it's really, really good to see you!
Hope the botox helps love.
The copywriting sounds good too! I'm pleased for you!
-
Good to hear from you Techie, copywriting sounds cool especially if you can make a few pounds out of it.
-
Hello there!!
Ok, well botox didnt work, lol! Theyre not sure why, the physio thinks it could be because my muscles are too far gone and my neurologist thinks it could just be that my system doesnt respond to it (I would think its the second option). So, to make sure it doesnt work (they have to follow a process) they gave me a small amount of botox for my toes on monday which is...fine, don't really expect it to do anything, lol. The plan now is to try nerve blocks so that they can see which part of the muscle is doing what, but thats not gonna be for another 3 months so...yeah! Thats it so far. It does feel like we're getting somewhere, at least theres an alternative to botox that they can try - again, doesnt always work, but at least they can give it a shot.
Anyway!! Hope everyone is doing well - catch ya in a bit, guys.
Cheers.
T
-
That’s a pain in the ****. Are you ok about it?
-
Sorry it didn't work love... Hope the next option does...
How are you feeling?
-
Hey. :)
Cheers for the replies. Yes it is annoying. I've spoken to people who've tried nerve blocks as well and they don't always work either, lol! I don't know, I'm annoyed I guess, but I'm getting the feeling that they can't quite decide what to do really. If the nerve blocks don't work, I don't know what is gonna happen - still waiting on another surgical opinion, but when that will come I don't know. Have to see, I guess.
How are you all doing in here?
T