First time post so it may be that this isn't the best place for it but seems like the best place to be pointed in the right direction at least
I am the older brother (by a year and a half) of a 40 year old paranoid schizophrenic and a recent medication scare (blood tests after clozapine showed red so the dosage had to be reset) made me realise that as family we've relied almost completely on the advice of over worked health care professionals and never really reached out to other families to share their stories and advice.
Some of the things i want to discuss and find out if people have had similar experiences of are:
- long term hope for my brother, someone who has had the illness for 22 years now.
- whether some people with his condition just never really comprehend the illness they have? My brother's medication has long controlled the positive symptoms but his quality of life is non-existent due to the negative symptoms. Also even though he happily takes his medication when asked he still doesn't really think he that he has an illness and for me that has been the thing that saddens me the most because whereas i've known other people with schizophrenia who hold jobs and relationships my brother is just like a kid with a 20 year hole in the life that can never be explained - to potential employers and partners - because he can't comprehend or accept the illness. I don't know whether it is the stigma he associates with it or a symptom of itself it seems that life can never really move on for him if he doesn't know he is ill.
- whether there is more out there available for my brother to improve his quality of life
- whether there are alternatives to clozapine.
- whether anyone knows of someone taking clozapine who also has a condition called CVID - common variable immune deficiency? My brother was recently diagnosed with this and the doctors are adamant it is not related to clozpaine but that seems like too much of a coincidence.
So these are some of the things i figure it would be good to discuss and share other peoples experiences of. No idea if this is the right place to start but any advice or guidance would be greatly appreciated.