Hello all,
I’m 37, and live with Schizoaffective. I’m thinking of starting a blog to offer factual information, resources and tips for parents of adult children with Schizophrenia and Schizoaffective. It would be coming from my, an “insider’s,” perspective. My mom and dad are willing to contribute as well.
Is this blog something that would be helpful for you? I’ve lived with this illness for about 20 years, having my first episode around 17. I’ve been hospitalized 3 times, once abroad in Ireland (that was interesting! They have whole different system that I liked!). Through the years, especially in the last 10, I have researched schizo/affective extensively as well as tools to help myself and my family. I want to pass on what I know to others, especially all the incredible parents who love their sons and daughters and who are in great distress.
What do you think? Does this sound helpful? AND if so, what are the absolute highest priority issues I should be covering?
That would be fantastic!
A long time ago we were able to speak with
Anyone on here—including anyone who was diagnosed. It was SO helpful for me!
Looking forward to your blog and welcome!
@Kimb, welcome. I’ve been living with SZA for about 35 years, and have done something similar within this forum for years. I don’t blog as I work as a professional and coming ‘out’ with SZ/SZA could endanger employment and to a lesser degree social standing. Research my post history for details. Now that’s where a blog might help me: I wouldn’t have to continually repeat myself
I think the idea of a family blog is a good one. I feel I’m most valued here when I offer fresh points of view. I’d say storytelling posts are my most ‘liked’ category of posts, so I think telling your stories from multiple perspectives could be compelling. I try also to give an inside view of how people with SZ/SZA think and feel, but this may be harder to generalize in a blog. It’s situational in nature, and lends more to a “Dear Abby” format or forum-based back-and-forth.
As far as priorities, avoid reinventing the wheel. Much of this information is out there, the bigger problem is knowing where to look and how to make sense of it. Simple language and personal narratives, would distinguish your content.
Consider the following site about psychiatric medications:
The main author has been going through some tough times lately and some content is outdated, but I think it’s successful because it gives simple, honest and even humorous advice and observations.
My advice is to create content that you and your parents feel you would have wanted if you had to do this again and tell your stories as authentically as you can. Good luck. Message me if you have any questions or need any help.
@Maggotbrane
Thank you so much for this feedback! Good point about not reinventing the wheel. I’m an excellent researcher and one aim to is curate specific resources that could be helpful depending on what scenario. I love doing those kinds of things.
I agree regarding the need for personal narratives. I admit I’m feeling overwhelmed by all the possible narratives I could write about!
I think your idea is great! I’m impressed that you are taking the initiative to do this. We are the older parents (80!) of a 38 year old son with SZ. He is on both Invega and Clozapine and these drugs seem to quite the voices. He has recently moved to an assisted living facility for folks with cognitive disorders
Yes, would definitely read your blog. Good to have an “insider’s” perspective. I find it difficult to know what my SZA son is thinking/feeling. He’s pretty reserved and responds in few words. SMI is a difficult journey and I think it’s helpful to hear of other’s personal experiences.
Absolutely! The more people that share from their own perspective the more progress is made. You sound like you really have managed well and please let me know what your blog is so that we can follow you!
That would be fantastic, I could use all the insight from a person that has been there. I have a 30 year old son with paranoia/phycosis. He does not want to take medication and not being on medication is hurting him more then he knows. Because everything is a conspiracy, he has no concept right now of what’s real or not. Is very hard to see him like this, knowing he is suffering.
Yes! How wonderful of you to take the time. Would you be writing here or a separate blog elsewhere, and if you did would you provide a link to it?
Our 25 year old schizoaffective son lives alone in a small studio apartment I found for him. I pray everyday he doesn’t do something to be evicted - we can’t have him live with us. He never goes anywhere except to the grocery store, a few doctors appointments, and to the pot shop. Luckily I was able to get him on SSDI. He communicates with us only when necessary - sometimes loving and friendly, other times paranoid, angry and probably delusional. (That seems to happen if he is stoned.) We are lucky in that he does go and get a Risperidone shot every 2 weeks. (He has been good about keeping those appointments by himself - I check that he goes) That has kept him out of any psych wards for the last year so far. He refuses any other kind of medication or counseling.
But yes - my husband and I wonder quite a bit what goes through his head. My husband asked him once what he was thinking and he said “you don’t want to know what goes on in my head.”
It would be wonderful to read about experiences from an insiders point of view.
Crazmeds was the first resource we relied on when our daughter was first diagnosed. I haven’t checked them out in a long while but there was a wealth of information and we learned a lot. There are so many avenues to explore outside of the mainstream and we need voices to get that information out.
Hi @Mamart, yes, it would be a separate blog with its own site. When it’s ready I will definitely provide a link! Thanks for your interest!!
Thank you for sharing about your son.
I can definitely relate to that, save for getting marijuana. For years, my only real interactions were with store clerks, doctors and transit workers and wait staff. It slowly got better and I attribute that to counseling. Not the kind of counseling/counselor who wants to set up goals with you at the beginning. A counselor who can meet you where you are at. In my case, that meant finding a counselor who would work with me when I could hardly even talk!
Yes! That was and sometimes still is, me! Very typical experience. I live with my parents and we talked about how hard it was for them because I just did not respond to things! I’ll be talking about that in the blog. Again, I will be sharing the blog’s link when it’s ready.
It’s complicated and my story is far from a typical case, but on paper it was a couple months.
I was working temporary jobs while symptomatic after dropping out of college. I returned to live with my parents with the goal of finishing up school. My mother was adamant that I couldn’t stay at home if I wasn’t working, so after a couple months I got a part time job in my field similar to paid intern work. I got the job through local contacts and was going to a different school part-time. At the same time, I was seeing a Jungian psychologist, but went unmedicated. I was delusional and misperceiving things floridly at times, but managed to keep it together.
After a year I returned to my college after a weeklong mental hospital stay, but failed to finish my degree, so I returned to my old job. In my absence my job had been filled, but moved into a more senior position. It became clear to me I was likely to lose my job if I didn’t take medication because my functioning was in decline, so I started supplemental psychiatric therapy. I continued to advance in my career and socially from there, and after ten years I returned to finish my degree.
Would you be writing here or a separate blog elsewhere, and if you did would you provide a link to it?