Hi all. In new here. I am on the waiting list to see this richard kannan in melbourne and am quite terrified. I have trouble with my right side-walking movement and balance/coordination. I am missing half a cerebellum but have been told this is not the cause.
Does anyone have any info or encouragement?
Stay strong my friend is suffering the same I am on crutches round the house and wheelchair when I go out, it's just been over 12 months now and I'm still positive even though my neurologists has said I'm not going to improve in her opinion as I've got to many symptoms, I'm still not giving up and try to live a normal life whatever normal is anymore lol, I'm visiting Melbourne in may as my son lives there it's a 23hour flight I've done it before and it made me stronger, knowing that this disability does not have to affect whatever you want to do, stay positive and good luck with the appointment and let me know how you go on.
Try to stay strong we have all worried about doctor's appointments write down anything you are unsure of big deep breath and go for it girl love and blessings Christina x
Hi Richard, I constantly say there is life before fnd and after. It is hard when we get thrown into a category that not much is known or understood about. The medical profession as a whole is very uninformed and unsympathetic to what they do not know or understand. The fact that you have 1/2 of your cerebellum gone is definitely cause for fnd type symptoms and a misfiring of your brain. Prayerfully you will get some relief with some anti-seizure drugs if you have a Dr. open to trying them. I would still be sitting in a chair now for 17 years if my Dr. would not have been open to them. Will hold you in prayer. Yes stay strong, it is a hard journey but one with can be used no matter where they are in this life. I have to remind myself of that continuously. At this time I am suffering with hemifacial spasm. My mouth is pulled hard to the right and I talk very slowly, and my right eye clamps down hard much of the time. Also suffering from dystonic esauphagus. It is hard but trying hard to stay strong. Keep your eyes up, and remember it is one day at a time, we tend to get a head of that at times. God Bless, Cathy
No easy answer really, some people to make a recovery which is great. Some improve but are left with ongoing symptoms but as stated in your other replies most of us just learn to manage the condition as best we can.
Don't feel guilty at all that you are unwell. Just because there is such a poor recognition and understanding of the condition doesn't make it any less real.
Have a look at neurosymptoms.org and it may be useful to show your general practitioner the information.
On the positive side, the more you can ACCEPT the condition psychologically and not fear you are going to die, which I think we all go through, the sooner you will be able to focus on what you can.
I wish you all the best in this journey.
Dave
Thank you so much all of you for your support answers and info. I dont understand something: the wekipedia said that fnd is when the structure of the brain is normal but not working well-so i can't fit in that catagory with half a cerebellum missing! !!!! Convergence disorder aounds a bit more appropriate but i dont fit in all that criteria either! !!
it really sounds like you all continue to suffer and put your effort into managing day by day rather than hoping or looking to heal recover or get rid of it! I feel for you all but not ready to give up! I want my life back! I want to be normal! I want to be part of a group of motivated self healers! But i understand the road is long and hard and the longer you're on it the more you can grib the grim reality! I dont think im going to dye from this although sometimes i wish i were dead! It is really hard to live like this! Yes! Painful torture coming from the inside and no one understands or can really help.....
Today my phsycologist told me the time is not right to go to this dr richard kannan yet! My husband needs to be involved to ensure some success and hes too hostile to be there for me now......
Its so complicated .........
Thanx for listening.....
Hi there : )
May I ask how come you are missing half a cerebellum ? ! Since balance and co ordination stem from here I was rather shocked ! Angela x
OK. This is not funny.
Thinking of giving up work
FND or ME?
