Hello folks ,

It seems that I am having more frequent falls. My last fall was on Sunday just gone, I had my leg braces on , and just put some rubbish in the bin outside my flat. Then I fell over in my hallway and landed on my left side .

I fractured some ribs , so now I am on codeine , for the pain . My doctor says it can take from 2 -4 week’s until I am up and about back to my own clumsy self .

So I had to ring my agent and put my next Riverdance tour on hold .lol.


A worry

Ok for over 18 minutes months I have had difficulties with being able to pass urine. I suffer hesitancy – not being able to pass urine at all. Even though I know that I want to go. And urge incontinence – suddenly wanting to go and not being able to stop myself. For a year I saw a Well woman physiotherapist who together we tried all sorts to improve my situation. Pelvic floor exercises, internal stimulation, double sitting, prodding here and there. She eventually had no option but to place me on medication, which did work. That is until recently when I have found myself once again suffering hesitancy and urge incontinence. For which I have asked for a referral back to the physiotherapist.

I was with my brother, who also has Neuroferritinopathy, last night and we were watching the news when one of the news stories was looking at the treatment of male prostate problems, and how they caused some men to have difficulties passing urine, at which point my brother stated that he too had hesitancy and urge incontinence.

Here was I thinking this was a ladies problem only to realise that it’s more than that. I told my brother that I had the same difficulties and that I had asked for a referal back to the physiotherapist. At which point my brother asked “Why do want to see a physiotherapist, “They deal with arms and legs don’t they?” I explained that they dealt with so much more.

I’m going to ask if she can shed any light on our problems, in the hope that she will be able to look into it and hopefully be able to give me some advice that I can pass on on here.


Botox update.

Well I had my Botox Injection  3 weeks ago Following on from a failed injection just over 3 months ago and am very pleased to say this time it has worked a treat.  I  am also now in possession of a soft collar, after waiting 8 months from initially requesting an appointment to orthotics.  I can say that it makes a huge difference, as strain is taken away from my neck.  I am only allowd to wear it for 20 minutes twice a day as they don’t want my neck to become reliant on it, weakening the muscles even further.


Update on my condition

Good morning all , just a quick update on my condition, it is deteriorating quite quickly .

Now I am struggling swallowing  food , on the odd occasion I am chocking which is very very scary , as I live on my own . Just eating any pastry or a pizza for example .

So dear daily diary just one word” bugger ” lol .

Warmest regards Darren

Happy days are here again

Just got my PIP results in today and after alot of nail biting over the last 3/4 months lol.

My results read enhanced for both daily living and mobility for 10 years , so after me 1,2,3,4 happy day’s are here again ………… lol

Warmest regards Darren

Botox update

I had my three month Botox injection in my neck on the 13th September.     Not to relieve pain as I was at that time pain free, but to reduce stiffness in my neck.

Although Botox has always been a relief for pain and stiffness in the past.  This time I have found myself with a lot of pain in my neck following the injection.  My neck is also a lot stiffer than it was previously.  I was told to give it a few days to see how it goes.  However after giving it a good 2 weeks I can safely say it hasn’t worked, this time. Ah well only another 2 1/2 months to wait until I can have it again.


Update on my clubbed toes

Good afternoon all ,

I went to the hospital appointment last Thursday because of my clubbed toes . And the plan of attack is to cut the tendons in my toes so hopefully they will be straight again .

Happy happy day’s so just waiting for my surgery appointment .


Clubbed toes

I have an appointment on Thursday about my clubbed toes on my right foot . The appointment is with an orthopaedic surgeon , which I am quite worried about , as I think they are going to suggest surgery to pin my toes straight .

I will update you after my appointment .


New ankle brace

Good morning all,

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.


Warmest regards Darren


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.