Help at your fingetips. You are not alone. Join Samantha and Darren as they share their experiences of living with the disease. And who hope that for those suffering with Neuroferritinopathy they will be able to feel less isolated.
I have just been to the orthotics dept at my local hospital for a new ankle brace . It is just like a sock for my left ankle, and it is fantastic. I have a full brace made from plastic on my right leg for severe foot drop , but this new ankle brace is fantastic , I am over the moon with it , as instead of walking on the my left side of foot it has given me more balance when I walk with my stick , so happy happy day’s.
I don’t know why only I’ve started falllibg asleep throug the day. Eerytime I Lower my head,, e.g When reading a book, praying. I inevetiatable fall asleep. Yesterday I slept all the way through the teachings at church then in the afternoon whilst our for a meal with friends I again started to fall asleep. I came home and want straight bed and slept for a further 3 hours.
I believe Im taking after my dad and my brother, who slept / sleep a lot of the time.
I do not want to sleep constantly.! And it concerns me.
Hello folks , not illness related , but I thought I would share . The DWP have finally received my PIP application form. I would like to thank , citizens advice and everyone at the Eden Valley Hospice for there help in and input with the forms . So wish me luck and let the fun commence lol.
I am feeling really really low at the moment , probably just a part of my life which is expected .
Due to my condition worsening , leg spasm and walking on my right foot with clubbed toes giving me alot of pain .And also knowing what the future holds due to seeing my father deteriorate over the years .Sorry if this seems like doom and gloom but just been honest.
On the bright side it is my birthday tomorrow 48 (bugger) lol and the sun is shining . I always remember” life isn’t about waiting for the storm to pass , it is about learning to dance in the rain .
Good morning all , had an appointment with orthotics dept at local hospital yesterday due to my foot been clubbed and walking on my leg brace is very sore .
Unfortunately they couldn’t help me after trying to put something on my leg brace to try and straighten my toes , and give them there due they even tried to make something to go under my toes. Using some form of putty , that didn’t work either , so unfortunately they had to give up with the job which made me quite sad . So I think the next step is to refer me to Podiatrist which I already have seen . Happy days lol
As if having Neuroferritinopathy isn’t bad enough on it’s own. To have to go through the menopause at the same time. Trust me its NO fun, flush, hot sweat, flush, hot sweat, flush …. then there’s the middle age spread. Which keeps on spreading. And I’ve only been going through it for a couple of months. Ive been told it can go on for years 😪. The difficulty I have is that because Neuroferritnopathy affects the Basal Ganglia which Controls your muscles, effectively making them weaker and un-coordinated. I’m unable to do any exercise to get shut of it, and am currently down to eating 1 lettuce leaf a day.
Hello folks , feeling a bit sorry for myself today , as I have just had another fall , you know how I only get 2/3 nights sleep a week due to night cramps , but I was fast asleep last night and someone rang me at 23-30 then I couldn’t get back to sleep ( bugger)
Good morning, everybody just had the worse night ever with leg cramps , I usually get them 3 or 4 times a week, but last night were the worst I have ever had , them went on for 40 minutes just constant cramps . So today is a lazy lazy day just on sofa with sleep mask on . So dear daily diary just one word”Bugger” lol .
Well having thought my Diazepam was amazing I now discover that the side effects aren’t. I’ve noticed over the last couple of weeks that my coordination wasn’t what it was and that my balance has got a lot worse. It wasn’t until the other night when I thought I’d read through the Information leaflet that I came across the side effects.
a. May cause coordination difficulties. b. Can cause difficulties with balance.
i spoke to one of he GPS at the practice who was surprised that with my difficulties with coordinato and balance that I’d been prescribed Diazepam. She advised me to stop taking them, as I was on such a low dose! And has prescribed 10mg Baclofen to be taken 3 times a day instead.
note to self. Read information before taking meds in future.