Family and Caregiver Schizophrenia Discussion Forum

Sometimes I wish

Hi Jax,
You are such an accomplished woman, and it is encouraging to hear you will continue with your studies as you care for your son.

My daughter is 32, and was diagnosed at 18. She finished college, but cannot use her degree because of her mental illness. She stays home, with me now that I am retired. Despite her illness, she has such a strong will to live. She is truly a brave young woman. I think what has changed the most as I have navigated her illness all these years is me. I have learned to accept her as someone with schizoeffective disorder. The new normal. Low, if no expectations. It seems as if we are both happier this way.

My best wishes to you and your son.

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hello
" May I ask, is there anyone here that has a success story to share "
therare a lot of success story to share : I went in toronto in march from Toulouse with my schizophrenis son ,to make an appointment with an orthomolecular nathuropatic doctor after
Having discovered this video - the healing of Sara Y K after 35 years of schizophrenia : https://www.madinamerica.com/2017/06/schizophrenia-deconstructed/#comment-115219

Since the beginning of May my son takes his treatment(processing) orthomoleculaire and already he gets better - he has much fewer disorders(confusions) - to understand(include) how’s that works buy " healing schizophrenia " - " schizoaffective disorder are are cousins of schizophrenia

my email : muscat31@free.fr
barthez fr à Toulouse

[quote=“Francis_B, post:22, topic:5589”]
to understand(include) how’s that works buy " healing schizophrenia " by abram Hoffer - look
watch his videos on youtube -
courage !

@kmbr88 do you find my asking is your son in the same town then? Is it the town he grew up in?
I take a bag to my son every Sunday with food, a wee bit of cash, and usually a new pair of pants or t-shirt. He waits inside his dad’s house while I put the bag on the porch and then his dog runs out and I give him a rawhide bone. Just knowing he is close, sheltered, and safe is what lets me close my eyes at night. It’s a deep ache isn’t it? I’m glad you saw him :slightly_smiling_face:

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We live in the same town. This is not the town he grew up in. He had been living with me until recently. I don’t know where he lives. He won’t return my calls. When he lived with me he wouldn’t eat any food I prepared and any gift I bought was left untouched. Yes it is very sad. I love him.

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I’m glad I seen him too. I don’t want to disturb him. His world is so painful already. At times I will text him, then I find myself hoping he isn’t disturbed by my attempt to comunicate.

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Clozapine has been a wonder drug for my daughter as well. She was diagnosed at 15 with schizoaffective disorder. For 2 years, nothing worked. Finally, they tried clozapine. She has steadily improved in the last 3 years. I still worry about the meds becoming ineffective but the progress has been remarkable. Small steps that add up.

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Some days are harder than others but for the most part our son has been med compliant and has only been in the hospital once. The meds did not take care of the voices but luckily for all of us the voices are positive and friendly. He talks to angels and God. Other than us they are his only friends which is very sad. He worked so hard to get his Master’s degree but I don’t see how he will ever be able to use it. We do have a problem with cleanliness but throughout this he has a general sweet disposition and is very helpful around the house. We have set up a Special Needs Trust for him but we are still very concerned about who will look after him once we pass. There’s always a concern and not a day goes by that we feel such depths of sadness. I truly hope Medicaid and SSI are not cut because without these to help us his condition would only worsen.

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Mbw, it’s so hard to see the potential our children had just fade away into oblivion because of this horrible f’n disease. It so unfair and cruel.

For us, our son’s future was taken when he was just a freshman in college. The sadness you must feel since your child worked so hard for a masters degree must awful too. Both of our children were robbed.

We too recently set up a special needs trust, and we are fortunate to have a loving daughter (our son’s slightly older sister) who understands what her future will look like someday, as the caregiver for her little brother.

Give us all strength to do this work.

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That’s how it was for me too. Now that he is on meds he will eat some of the food I provide but it seems he prefers the frozen Amy’s meals. If my son is able to move out, I wouldn’t be surprised if he did not stay in touch. Which would be rough for sure. Today I got him a soccer and basketball in hopes that he may be interested in some things he used to do. These may likely go untouched. I hope you run into your son again. I am also torn about the texts - do I text him or am I causing him more stress.

The best story I have is my own is right after my daughter was diagnosed with sz and she didn’t want to be on meds and I found Profrontal and the website to go with it. It is two amino acids and I also added flax seed oil and a high potency B complex.My daughter was perfect for as long as she was on the supplements. Unfortunately she stopped the supplements bc she thought she didn’t need them anymore and I am hopeful at this time after she is released from the hospital that she will go back on the supplements. She said she would and that is as good as it gets right now. I know that there are answers out there and I have found some naturopathic doctors that work with people with mental health issues that are severe like schizophrenia. One is called Resilience Naturopathic and they work with people around the nation, that is where we are going next week, crossing my fingers for that and saying a prayer.

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I would be very interested in hearing how your experience is with this new naturopath (sp) All our best. I know there has to be a treatment somewhere.

Hi jax…My heart goes out to you and all the pain filled stories on the board. There is hope…you have to create it though, and manifest it in every thought and word even though your logic knows all the tragedies that can potentially happen. Our son was diagnosed major depression November 2016, severe social anxiety in December 2016 and paranoid schizophrenia in March 2017, He was in his jr year at university. Fortunately, he and I have a very close relationship so I was privy to his thoughts as the disease went into full bloom and he trusted my conversations with him. Also, my husband and I were seeing an excellent psychologist at the time whom gave us a fab referral to a psychiatrist that had for 20 years run the downtown free clinic (major city) and done an excellent job there. The doc had serious experience with the homeless psychotic population and our son connected fully with him. Doc is a great chemist.
My shrink told me…“Don’t get on that roller coaster ride with him…” Great advice…challenging to maintain.
We brought our son home from college in March and I committed to being his ‘Rehab Coach’. We were in a position financially that we’d be ‘OK’ with my home business efforts part time and coach/caregiver. It took some getting use to living within our means and adding son’s needs/expenses. I know not everyone can do that.
After 6 weeks of throwing myself into research about the disease, I was angry. Angry that the medical industry knew as much about the brain as they did about the heart 150 years ago. There is however, great research currently going on thanks to Boomer’s parents getting Alzheimers and technology advancements. I read TONS of stuff…and our son was also very proactive in research. He often would ‘reddit’ some info, impulsively be ‘all in’ (which I am SO grateful for) and I would follow up with very thorough research. Having knowledge of exactly which areas of the brain get attacked by the disease and what aspects of being human these specific areas control, have allowed me to both understand why he’s doing what he’s doing AND equally important…which area, that day, was healing.
Being at home under low stress myself, helped me to turn on my own intuition full throttle…critical in knowing how to approach him, language I used, and well, basically manipulating him to continue to move in healing paths and behaviors. I felt ‘stages’ of healing. The first was 7-8 months, the second 3-4 months, the third 1-2 months, then he moved into a new ‘phase’. He is now Phase 2, Stage 1…thank God.

He takes Olanzapine, Buspirone, Loxapine, Gabapentin and Fluoxetine.
(Son gained 50 lbs in 5 months…even with my preparing all kinds of fresh fruit, veggies dips healthy healthy healthy). I describe the healing process to family and friends as a 3D printer creating a brain, layer by layer hundreths of millimeter thick, only this is a living organism that recreates cells every day. Some takes, some doesn’t, some takes and is lost, yet ever so very very slowly, improvement happens.

Son also takes Sarcosine, Acetyl L-Carnitine HCL, Acetyl L-Carnitine Arginate, L-Theanine, Iodine, Selenium, Chelated Magnesium, Alpha Lipoic Acid, Vit C (small doses throughout day), Folic Acid, Melatonin, D3, EPA/DHA(fish oil) 3 grams/daily and Lion’s Mane. Some of this info is on this site in the supplements/vitamins area. Others we had to research and discover.
And he meditated 2-4 times a day from the get go.

Even with all this, the progress was sooooooo incremental and slow UNTIL, son decided to start vaping PURE CBD oil in Feb 2018. Wow…it pulled everything together and advancement became noticeable and incredible.
One MUST get the CBD oil that has ZERO THC present…ZERO. THC and schiz spectrum very bad mix. Even if it’s the so called ‘innocuous’ THC types…once it is either heated or eaten and goes through the liver pass, the THC morphs to a different type that’s bad for schiz brain.

There are times where his conversation is like other 22 yr old male classmates of his. He is taking a computer programming class this summer, with special accommodations of a note taker, tests in a private room with extra time, and can leave the classroom if needs to.
He has worked with his Dad since October 17, part time, shooting photos for online sales. This was a hobby of his earlier teen years. And we started requiring rent (very low amount, but just to begin bringing him back into the real adult world)monthly plus a student loan kicked in, which he set up minimum amount. He has met those financial requirements for 7 months now.
We also found a psychologist that he likes and respects and added that to the mix in late February 2018.

We still have years to go…and it could all go to hell in a hand bucket at some point…Dad and I know this. However 7-8% of people with schiz spectrum disease walk away disease free at 5-10 years in the USA. In Western Europe it’s 25%, Or so I understand.
I cling to those numbers.

Gray matter loss…Trials are finding brain cell re-growth in Alzheimer’s and Stroke victims through use of hyperbaric chambers. Push for schizophrenia brain disease victims as well…

HUGE genome study done years ago with 100,000 people with schiz spectrum have these identifiers…frontal lobe, immune system, and calcium pass. WHY isn’t this info distributed as a preventative???
ADHD…don’t smoke pot until your 30!
IMMUNE SYSTEM problems…do they have ADHD also? Don’t take ADHD drugs until you’re 30! (home school or alternative school, holistic methods…Don’t smoke pot until you’re 30!
CALCIUM PASS…not really a preventative there…has to do with the heart disease the spectrum can develop.

I understand that my knowledge and situation applies only to Paranoid-Schizophrenia. I am also NOT a professional, so things expressed as my opinion are just that! Hopefully something will help in this recount. Please send a message if you have a question.

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Very interesting about the hyperbaric chambers and the vaping of the CBD. I tried to get my daughter back on Profrontal that has two amino acids and she just wouldn’t. Then I tried Black Seed Oil and it worked all by itself. Great while it lasted. She quit taking it and is on a downward slide again. I wish I could figure out how to get her onboard with her own health instead of keeping to her idea that she is not ill. You are blessed in that regard. Thanks for sharing

I am sorry to tell you that after 40 days in the hospital she quit her meds and changed her mind about going to the naturopathic doctor. I was able to get her to take Black Seed Oil for a couple weeks and it worked while she took it at 1 Tbsn a day. She quit that too and is in the beginning stage of psychosis at this time. She was having mini strokes during her last time at the hospital and she kept complaining, but they never listened. Just as soon as she got home she looked up her symptoms of massive headache, numbness and severe thought block. I tried to get her to go to the doctor to be checked, but all she said is that God would take care of her. If I could get her to go what I want I would take her. I just read an article about contronting a sz and what to do. Basically the best outcome of the article was a family that put there foot down and demanded their loved one take the meds or be kicked out. Well they complied and the person with sz recovered to be a functioning family member. I don’t know if I would do that yet, but I think it could happen in the future. This other person had already been in the hospital 23 times and my daughter has been 4 so far and number 5 coming up soon.

I’m so sorry to hear that. Everytime we get our hopes up it seems like something else happens. My son never came out of psychosis. He talks to angels and God all of the time and thinks he is just fine. It doesn’t dawn on him that he doesn’t have a job, any relationships, lives at home with his parents etc. Not sure how to proceed here either because he won’t move into a group situation and there is no way my husband is going to “throw” him out. The daily stress certainly effects all of us. I hope your outcome is much more positive.

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I just returned from the hospital as my daughter has been admitted for the 5th time of her illness, 6th since I miscounted on my last writing. One four years ago, one three years ago and the other four are for 2018. She was able to stay out of the hospital mostly bc of Profrontal, Brainvitaminz and other supplements. When she quit the revolving door started. The doctor wants to put her on a monthly injection since she is med non compliant. I have heard good things with the injection and I hope that it can be a bridge for better health. Resilience Naturopathic has good results with no drugs, but right now I can’t convince her to do anything at all,except be home with me. She was running around naked for a few hours last night and my son called the police to come get her and they promptly did asap at 3am today. I am trying to get her to see that running around naked is considered gravely ill and so is not eating or drinking.

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Hello Kellyshayne. I’m sorry to hear you all had such a tough night, but I’m so glad the police and hospital responses were good and quick.

I’m a strong advocate for injections for our non-compliant loved ones, as they allow us much-needed peace of mind. Even if the meds don’t fully stop all psychosis, at least your daughter will experience a much more stable mood. That’s how it’s worked out for us.

Good luck. I really hope you can get some rest and relaxation during this hospitalization.

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Hoping for the best for you. I know how this is breaking your heart.

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@Kellyshayne If she won’t take it can you get court ordered meds? That worked for my son. It was pretty sad to watch him and it took 1.5 hours in court. They took him to court in shackles. I don’t know if that’s standard. While in the hospital they (before the court order) were legally allowed to give him a pill that lasted 24 hours. They would say shot or pill and he would take the pill.

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