My child was diagnosed with Major Neurocognitive Disorder

Posted by nakiasimone @nakiasimone, Tue, Apr 9 10:35am

My son was recently diagnosed with this after testing was done from his neuropsychiatrist. He was referred to him because in August of last year 2 tumors were found on his brain and they wanted to know if they were affecting him in any way. Just looking at him you can't tell but according to tests, you can. Is anyone else dealing with anything similar with their child?

@nakiasimone, I apologize that your post was not responded to earlier. How old is your son? How is he doing? How are you doing?

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Hi @nakiasimone. I am not a parent, but an adult who was diagnosed as a child. I had a pineocytoma as a child and a barrage of treatments, radiation included, which caused several secondary issues as of late. The tumour compressed the third ventricle so I also have Hydrocephalus (water on the brain) where the cerebral spinal fluid is obstructed from flowing normally. I have a VP Shunt to help that along and have had ops to correct blockages when they occurred. I have had eye operations to correct my blindness that was cause by the Hydrocephalus. I can see now, though I have strabismus. I remedy this by doing archery. :).

It is said that the brain does not heal, but this has been proven incorrect as of late. The brain is an amazing organ and is capable of reprogramming itself, but I believe this is also due to will power, you need to want it.

I had radiotherapy the same year I was diagnosed, 1990-1991. I started school in 1990. I did not know that there was anything different about me, well, yes, I understood and remembered the treatments I was given but I did not allow that colour my view of myself. I was 4, I didn’t know who I was yet, I was still learning.

As with any diagnosis, it is like starting from ground zero. You’ve taken the hit, but you are still here. There are injuries, but we do heal. I was traumatized at sixteen to learn that my short-term memory was wiped out by the radiation. Even today, I struggle with finding employment that understands my memory loss. It’s honestly not bad, but in a world where it expected to be perfect in every aspect, there are issues. I volunteer with the local hospital and I am always looking for new ways to help out. I live at home and do get support from our provincial government and I have a great personal support worker.

I do not allow my disability nor sickness define me and I believe this is crucial for anyone who is diagnosed. I am a two time college graduate: I have diplomas in Advertising and Medical Office Administration. These were achieved through long hours of studying and the support of my family, friends and the support of my professors.

All I can ask you to do is be a parent, a friend. There is no instruction manual on how to live life. You are given instructions on how to live with the apparatuses that you may acquire through the treatments but there is no clear cut right or wrong way to live. Set no limitations. You will discover the limits only through doing. Stimulate the senses for your son, one way or another, he will experience them. Live life to the fullest. As for yourself, do not beat yourself up. You must allow yourself patience, understanding and self-care. We are better when we are cared for. My dad and I do enjoy the occasional Rum and Coke, my Mum and I treat ourselves to weekend getaways.

Can I recommend the mAss Kickers Foundation? You can find them on Facebook. It was established by a friend of mine who is a Physical Therapist turned patient. It is a great support group for patients and caregivers.

I offer you my best wishes.

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