Did you receive enough support for your mental or emotional health in rehab?

Here are some responses from the Facebook community:

Leanne 
So true mental health should be a ongoing part of the rehab process. I will not go into too much detail other to say someone very close to me had a stroke at 17 and is still struggling with impact. Unfortunately 8 years down the track using coping mechanisms detrimental to their health. Family asked for cognitive-behavioural support - answer did not fit the criteria ie - stroke did not do enough damage to qualify. Neuropsychologist was only interested in assessing ability to make own decisions

Jo 
Unfortunately so true and this has been the path for my partner. The mental health struggles post stroke have had a far more significant impact than the initial stroke. We received no education around the potential for mental health illness. We need to start treating the whole person including their mental health. Women are screened for perinatal mental health during pregnancy and during the postnatal period. The risk of depression and anxiety for perinatal women is less than that post stroke. It’s time it was addressed for all those affected by stroke. As a consumer, I would be very happy to support these changes going forward. Thank you for highlighting this.

George 
We kind of sorted out the very acute stroke pathway with telehealth involvement in decision on thrombolysis, clot retrieval, as well as management of hemorrhage. Is telehealth a potential solution to bring the psychologists to the disadvantageous rural area?

Tracy 
If aphasia is included a neuropsychologist will often say “can’t be tested due to language impairment “. This has to get better. If 1/3 of stroke survivors have some form of aphasia, then surely the neuropsychology community are bright enough to develop a non language based test. And this is where Telehealth might fall down. A therapist may miss non verbal cues or not be able to see drawing/writing.

Katie 
I was seen by a normal psychologist and not referred to a psychiatrist as needed or a neuropsychologist, 12 years and the damage is still trying to be fixed, at least stroke is now getting better funding and support, thanks to the great work of the stroke foundation 👍

Suzana 
It is appalling how stroke survivors are treated 💔...after the second stroke I demanded help from hospital for my depression, finally saw neuropsychologist....they tested my cognitive abilities post stroke only....no one talked to me....haven’t tried again...never will.....I do not see it getting better for foreseeable future for any stroke survivors......

Kristy
Yep,at 34 my world turned on its head as an outpatient in rehab services the one missing therapy, actual therapy. I had speech, OT, physio even art therapy provided as an outpatient.My relationship at the time failed.I was cleared to work again which was a long hard process relearning 10 years of experience to recover . I wasn't prepared for learning to drive all over again,the loss of my sexuality, hair loss , going from 63kgs to 86kgs in 3 months affecting my self esteem severely,the confusion and frustration in not being able to communicate, permanant nerve damage, how fragile and painful my body felt . I was so strong and fit.I now have epilepsy as a result ,on a lifetime of medication after partial seizures daily and status seizures that landed me in ICU.These are the things people do not see therefore your designated as "all better now" I'm ok now,at 37 I do not remember what its like to wake up and feel healthy. Regardless, I'm enjoying getting another day,and every day is lived with a big smile and putting my own happiness before all else for the first time in my life❤.

I had my stroke (brain stem) in May 2018 age 54, due to septic shock whilst in hospital. Long story short from being a rag doll not able to walk, talk eat, etc and some 11 weeks in hospital, things are a lot a better these days although very different from my life before. I was a working musician sung and played a few instruments and so on, that is no longer the case. Life has been tough in many ways including dealing with centrelink and their appeals process, I ended winning that drawn out battle.

In all honesty my treatment of physical stuff has been first class, but I can't recall any time a health worker of any kind or sort ever asking directly how's your mental health?

Luckily I have gotten through ok. That would not be the case for many. So in short there's a real  problem with this issue.

Luke.

Hi Luke,

Thanks for commenting. What did you play? There are a few people in this community that are also musicians. Antonio was a guitar player, and now plays piano one handed. 

There is also a blog here (I will find it for you if interested) a Canadian guitarist that has worked out how to play one handed. 

It's a bloody tough road, so if you ever need support of some kind, the StrokeLine team are brilliant 1800 787 653. - Diana 

Hi Diana,

Played the guitar,uke,bit of mandolin etc, would have a go at most stringed instruments. Was a pretty decent blues harmonica player also sung. Having dysarthria has impacted on that a lot. I can barely talk I have kinda all round ataxia, so have lost the fine motor skills to play as before I can manage a few simple chords but thats it at present. But all is not lost I've bening teaching myself about MIDI files and making music with virtual instruments on the computer etc, It's been a big learning curve and enjoyable.

Even managed to get the NDIS to fund some software. That was interesting. The thing is, you have to say what can I now do and give it a go, not dwell on the past.

Regards Luke.

Goodness no.  I was deemed a significant stroke impacted person, but being under 50 at the time and having had the stroke many months prior to correct diagnosis, many of the rehab options I had designed myself to overcome the deficits = physical and emotional that I had been experiencing.  As a result the rehab unit really just watched and tweeked some of my activities, watched me attend to my activities and released me telling me I was the best I would be.  

Sadly the meds that were prescribed have since resulted in further impacts that have exacerbated the stroke affected areas - full right side and now I have Acquired Necrotizing Autoimmune Myositis - rare as it is, it has now seen all the deficts of the stroke return 10 fold and I am at a loss, as are the medical profressionals, to work on achieving some sense of 'normality' Rehab/EP/Physio/Psych/ all on a lets check again in 6mths - that's all that remains being offered.

Hey Luke,

I like your attitude, and if you sahre some of your electronic music, I would love to hear. 

D

Smartypants,

OMG, Acquired Necrotizing Autoimmune Myositis, sounds horrible. I would like to hear more about the rehab that you are now getting. Do you feel like you are getting the right support?

Diana