What services and help is offered after PCS diagnosis.

[pinkvision]

Hi, I'm starting to unravel the next steps after being diagnosed with PCS, elements specifically highlighted are: information processing, attention, memory, extreme light sensitivity and visual problems, auditory issues and sensory overload.

I was told to accept that these were going to be permanent and that I would be a patient of the brain injury service for life, no referral is needed from a GP if there are any problems, just phone direct and help is at hand.

The CAB are now helping me to sort out debt, finances and housing to get a secure platform to 'work' from.

Have sorted out limited advocacy help, non legal.

Have had information for legal help by a funded solicitor who can help if are a permanent patient with disability or mental health issues. will contact them soon.

So now I'm waiting for a GP appointment to round up all the medical info (got nerve and muscle damage also that needs surgery, MRI's and conduction studies are, done going next week to see the surgeon)

So I know what's wrong, PCS, will be getting fixed physically also and now I wondering what happens next.

Does the GP make further referrals to help with issues like learning to deal with life etc, like how to get the most out of life, I suppose that's occupational therapy. Writing organisation and visual memory is a very strong point for me, along with mental flexibility, while everything else is a mess. So I need to adapt I imagine to use these strengths to take over the messy parts and adjust to life via that process. Verbal and written information is bad along with my verbal response, these are the bits that don't compute. How do I try to improve these, who would help with this?

On top of this light sensitivity triggers visual distortions like moving patterns and warping buildings and rooms etc which leads to a panic response in my body that results in blacking out if I'm exposed to direct sunlight, LED and fluroecsent for too long. I'll get help with this once I can find the money, behavioural optometry, it's non NHS.

I'm thinking along the lines soon of experimenting with neural reconstruction via meditation coupled with art therapy for information processing. Like building a bypass in the brain for processing problems and building new memory patterns.

I've just realised what I'm doing here, it was pointed out to me the other day at the CAB, I can't make decisions in thought or verbally, so I'm writing down my thoughts because they make sense if I write them out to someone else. This is what the psychologist was trying to explain. She said write and keep writing everything.

I digress, oh dear, this is great

any thoughts would appreciated

Thanks

[Nackapan]

Sounds like you on overload. I think you need to separate things. Deal with one thing at a time and work down your list. You introduced me to behaviour Optometrist Thsnks you. I've not seen one yet. Going to neurologist next week to help clarify my diagnosis.

CBT might help you. Would a social worker be relevant to help you navigate what you need?? You sound very well informed but need help unravelling a ordering to get the services you need. Do you wear a big hat with a good brim to help with light sensitivity. I do. I hope you feel less overwhelmed soon.

[pinkvision in reply to Nackapan]

hope neurologist helps, ask him to refer you to psychologist specialising in brain injury, they can work out exactly 'more or less' what's going on and you can adapt with that knowledge. Mine is brilliant and has basically pointed the way.

I don't wear brimmed hat, the lens should do the job. Depending what's happening with you you may need different lenses for different light types. Best to get daylight lens first. Make you find a good optometrist that specialises in brain injury otherwise you will be throwing your money down the drain.

I'm not overwhelmed, I'm on fire, can catch the moments to crash for an hour or so, or trip out meditating, you should try it, wow. It's making sure I try to hold the thought thread. I find I 'run' multiple threads at the same time, am learning to organise them. Like I mentioned writing everything down really helps, it's like confirmation of thought that's building and linking the threads together. I'm bang on it, creating my very own super highway. What goes in is what you become, tailor made reconstruction therapy, choose well. (like from the film 'The dirty dozen' No negative waves. Good positive waves, good positive new life.

Haha seem to be on one now.

Catch ya soon.

[jayne_h]

Sorry to hear you are experiencing problems, but you have found headway so that is good. In addition to the more conventional treatments, see if you can get a copy of Tina M Sullivan. Nourish Your Noggin. It's recipes based on the diet advice of a post concussion syndrome specialist. Tina is a nutritionist and her son was a patient of this doctor. She brought life to the diet with some good recipes. You can get the book on amazon. If you can't afford it yet, then basically a mediterranean type diet is good and try to avoid excess sugar. Use cinnamon to sweeten instead. Some herbs are anti-inflammatory and help healing. Cinnamon is one. Turmeric is another one. Turmeric works even more when combined with black pepper. She also wrote that almond milk is good. Turmeric can be used to make a golden latte. It's very nice.

Hope this helps to speed up your recovery

J

[pinkvision in reply to jayne_h]

Hi thanks will check it out