Yes, my sticks are all different colours to go with different outfits, but I love the idea of the animal print ones, so will have a look for those! You can never have too many sticks!
Hehe go for it Doglover!
Hope you're feeling better - enjoy the Bank Holiday weekend
Hello Suzynola
That sounds really scary. And it sounds like things were hard enough before. I'm glad it's eased up a bit.
I wondered about this before, but I didn't want to interfere or get this wrong - I can be clumsy with how I say things and this is a bit complex for the way my brain is these days
I'm not meaning I think you have one of these conditions, it's just info. a lot of things you've said made me wonder if it's worth reading a bit about this group of conditions to see if it sounds to you like it's one of the list of possible things to get checked for/excluded
There's a condition called anti NMDAr encephalitis. It happens most often in teenage girls and young women. It starts with small benign growths on their ovaries, the immune system tries to attack the growths but in doing so it also attacks NMDA receptors in the nervous system.
In the worst cases it causes sudden spells of fever, paralysis/catatonia, sometimes coma, involuntary movements. It can cause hearing and vision problems. People can be left with a lot of different neurological problems when they recover. These sudden bad spells can recur.
It can also happen with less severe bad spells than that.
Have you heard about sleepy sickness/encephalitis lethargica - what the patient's with parkinsonism in that film awakenings had. (the book by oliver sacks is amazing). The people with EL, or the group of conditions that were all called EL, in the 1920's and 30's had an initial bad spell of illness and then those that survived had quite a wide range of outcomes. Some never woke. Some went back to a near normal life and then anytime between a few years or even decades later developed parkinsonism. Other's had a progressive parkinsonism starting from the bad spell. Some recovered completely with no parkinsonism.
Some people are saying that anti-NMDAr encephalitis is what some of the more recent cases of encephalitis lethargica really were, and that it could cause progressive parkinsonism in some people.
It was only identified as a condition about ten years ago, and they've found so many cases in this short time they've classified it as definitely not rare, and probably still very underdiagnosed, especially when it's not causing a full on severe encephalitis. They are still working out all the different neurological problems it can result in and it's hard to find a complete list anywhere. A lot of websites and medical journal stuff only talks about the on the more severe cases - the serious encephalitis. The less severe cases get missed more often.
If the benign growths are removed it can often stop the severe spells recurring. That's why I've said all this now - I didn't want to give you worrying info if it's irrelevant, but because you'd had this really scary spell, and they didn't know what it was, I thought if there was any chance it was something like this, it's maybe safer to know. I really hope this doesn't give you more stress.
There are other conditions that are a bit like this - autoimmune and causing sudden bad spells as well as progressive parkinsonism.
I think the Queen's Square people are the best place for knowing about those things. Sounds like someone's taking it serious if you got referred there. I really hope they've got answers for you. take good care
best wishes
rhubarb
Thank you Doglover, my bank holiday will be pretty uneventful, i was supposed to go to a model casting for a fashion show on Saturday and i was a finalist in a beauty contest at a tattoo convention on sunday but I had to pull out because they were going to ask me questions on stage and Im not confident in my voice at the mo and cant think well enough to answer questions, bit of a shame. Im hoping to still go to the convention though. Its my mums birthday monday so i will hang out with her. Have you got any plans? Wow thanks very much for taking the time to write all that info for me Rhubarb, i appreciate it. And dont worry, it doesnt add any stress =) very interesting, ill try and look into it! I did have what they thought was a burst ovarian cyst before. My mum has autoimmune issues, my brother has tourettes which is another kind of movement disorder so i have no idea what goes on in our genes! I had my appointment today and he said they will do some more tests and he wants me to do this inpatient intensive rehab type thing for 4-6 weeks, ill give it a try! Thanks again, hope you are doing ok x
Hello everybody who may remember me from two years ago! Het is back!
I stopped going on here because i think i was fed up with thinking about PD as I had in the beginning when you become obsessed with trying to educate yourself about PD. Most of the time PD is in background and try to ignore it and get on with living, but of late, my hands have got weaker and i find that very distressing, i have my 6 month appointment with my Neuro and PD nurse, so maybe Madopar needs increasing..i am on a very very low dose. It is very upsetting this hand business - i am right handed and tremor has been in my left - but now right hand weaker and the hands are rebelling when i try and use them to carry, pick up all the usual stuff, button holes, applying make up etc. etc. dropping things
It was great to see some familiar names lie Suzynola7, Dolly, and maybe some others...is FED EX still ok?
I am going to have a sleep now, catch up later!
hugs and kisses to you all xx
Hi Het,
Welcome back! I'm really sorry to hear about your right hand, I hope your appointment helps shed some light on the situation. We've not met before, I'm Kat and I help moderate the forum.
It's nice to meet you :-)
Kat
Hello Het
So glad to here from you old friend , I was absent also from the PDF black depression the main cause couldnt think straight,and went a bit loopy ok now apart from severe back pain, keep in touch .
FED
Hello Suznola,
My favourite stick is the leopard print one I used to defend myself when a drugged up moron tried to nick my handbag last year in November. He must have thought I was old as my meds were wearing off and my walking goes to pot. As I ending up face to face with him I heard him say oh crap he had a knife at my throat and said give me your f****** handbag you crippled b**** all my meds were in that bag.
I was so incensed the stick came up hard between his legs and when he hit the deck I threw it up in the air and caught it perfectly at the but and brought it down so hard on his head it bounced in my hand and left a bruise on my palm. I never got a good look at his face but that voice I will know anywhere.
Colin ask's me now if I am going out and it is dark have you got your weapon.
Mr S/bag had better watch out I will if I come across him crack him over he's head again.
BB xx