Advise on how to deal with psychology

[Peanutbutterpie]

[Context: 8 months after rta, diagnosed with post concussive syndrome/mild TBI. I am inching my way toward a semblance of a life but really, still awfully impaired and couldn't do day to day without a lot of help from the family.]

I was referred to neurology in April, but still no word and GP says it could be a year or more before I get an appt. I asked him to refer me to "brain injury rehab clinic" and had first appointment last week. It seems like I'll be working with occupational therapy and psychology.

Had an initial consult with OT and got on well. Seems like she knows what brain injuries are like.

Psychology is another story. Initial consult they asked me to describe symptoms and they kept rephrasing all of my answers like they were emotional problems. (E.g. "When I go into a shop I get dizzy and feel sick" "Ah, so that's distressing for you" etc.)

Today had the first of three cognitive assessments. I can now force myself to do tasks for a short period but end up feeling horrendously unwell. So I probably performed ok on the test, but by the end felt like I was going to throw up, head spinning, terrible head/eye ache, couldn't walk straight. Had to call parents to come get me and drive my car home (only ten mins away from home).

Any suggestions on what to do about this? I'm scared that they are going to look at the tests and say there's no problem, but also scared to say too much about illness in case they attribute it to anxiety or emotions. I'm also autistic so I don't communicate very well anyway.

Any advice appreciated, really stuck for this one but I know I can't put myself through the same again next week.

[Pairofboots]

Hi Peanut. It is difficult undertaking these tests. I have done these a number of times over the years, and previously used some elements of them in practice. The results of the tests assess various effects involved with thinking, like planning, memory, long term, and working memory, cognition, and communication/understanding. They don't have a pass or fail. They assess based on averages, and will show how far your abilities have shifted based on pre and post injury. It is important that you explain how they make you feel when taking them, there maybe scope to reschedule how the tests are done. I know how hard this is, but, at least in my case, they have shown stability, or of late area's that have deteriorated. They may not find anything remarkable, but even if they don't, they will give a valuable insight. I hope that this helps a little. 🍀

[catrabb1t]

hi there, I am having these same tests at the moment.

So far I have had one appointment and had a talk covering historic and present day things and I did a Reading test. We finished early as it wiped me out. I will return to do more tests.

I relate to what you have written and have the same concerns about the tests managing to describe how I'm affected.

I want to try and write down something to hand to the psychologist about my cognition as I didn't write anything down last week. By handing him something written down it will probably reduce my anxieties (of what you describe) because the note will just state cognitive things. I find it all confusing as I am experiencing a lot of emotional differences and seem to mainly talk about them.

So far my psych has seemed an open book and has not said anything to give me cause for concern. I have openly talked about feeling ill etc.

Next time I go I will describe how I was affected after the appointment. I think it's important they know. Like you, I will be able to do the tests but they will have an significant impact on me afterwards.

As far as I understood, the tests use a formula linked to an individual's number of years of being in education.

Regarding your autism, you could ask the psych how the tests manage differences for neurodiverse cognitive functioning.

How does the standardised method of forming a baseline ensure the tests evaluate a person's neurodivergence I wonder?

How do the tests adjust the verbal component for neurodiversity?

Perhaps there will be a written part of the report regarding how illness affects you and, if applicable, how autism impacts the results...

I will ask this same question this week and reply back to you. I want to know too! I question how my own autistic daughter would fit into this formula due to her education being cut very short, yet she is very intelligent and has her unique way of processing the world.

I expect you feel confused by all the different factors for you - brain injury, emotional, illness and autism - anybody would. I share this same confusion with my own testing process.

Would you feel better having someone sit in with you? Being accompanied helps me to focus better.

As Boots said, they may not find anything remarkable, but even if they don't, they will give a valuable insight - at least we hope so. To protect myself from disappointment I am not expecting much... It would be a disappointment if the results do not capture how I am affected after BI as I do not function as well and life is different and impacted negatively so far, also some of that may be medication side effects...

Mine said they might re-test in 12 months. You could check that out too if you want to.

Try not to worry too much. Imagine the many people who go there for tests. I assume the testing process has to be able to meet needs.

[Painting-girl]

Hello P, I did the neuropsychological set of tests, and as Pairofboots says, it's to see how your TBI may have affected your cognitive processes - they're not trying to justify the effects of the TBI as being as a result of depression or anxiety, so don't worry about that. Definitely explain to them what effects you suffer on doing the tests. I did fill out a self assessment on fatigue at the same time. They should add into their report a summary of any discussion between you. My tests came out with strong dyspraxia indications, and we discussed that briefly at the end, and my comments were included in the report (essentially that I did have slight dyspraxia type issues beforehand) Neuropsychologists are really practical about brain injuries and seem to have a really good handle on the practical strategies you might need. That said, if you find after a few visits that you don't click with one, I think you should probably ask to see someone else, as you need to be able to establish a rapport with a therapist.

Incidentally re your concern that the report will say there's no problem - that's slightly as a lay person that my report read to me , which worried me at the time, but my neurologist took it very seriously, and backed me up strongly with my health insurance provider, and when I was eventually referred to a different neuropsychologist ( I'd just been referred for a report to the first one) she used the original report to explain to me what the report had flagged up as problems that I had (executive memory for example) compared to my healthy peer group educationally, and why that would make some tasks much more fatiguing than others.

There is one historic school of thought that thought that these problems post mild traumatic brain injury were emotional and not physical - but hopefully since more recent research with the more sensitive scanners in research settings, those days are behind us. The picture is slightly clouded by the fact that we are as a group quite prone to depression and anxiety - and our BI symptoms overlap with these - and that antidepressants can be helpful, but it is worth noting that my neuropsychologist was very happy to support me in weaning off them - she said that I wasn't depressed, I just had a brain injury.... ( To be utterly fair to the neuropsychiatrist that prescribed them, at the point I started taking them, I hadn't realised exactly how bad my anxiety was - and they did help a lot - and they were super easy to wean off too)

Hope this ramble is a little bit helpful!

[Peanutbutterpie]

Hey everyone, thanks for your replies! I did find them helpful, I ended up getting Covid in the meantime so didn't go back to the doc for a while.

Update: I voiced my concerns to OT and to the Psychologist. I don't know if I'm seeing a neuropsychologist or not. They just call themselves pyschologists. I haven't seen neurology at all yet.

They took it seriously and I'm able to do as much as I want in a session, but it still leaves me feeling absolutely wiped afterwards. Also I have suspected nerve damage to my right side and somehow using my brain makes that worse? I don't really understand it but afterI have to concentrate I can't use my right arm. It's all pretty sad to me as I was an English teacher a year ago and now I can't complete simple sentences without feeling nauseous!

Thankfully I had an IQ test done before the crash so I was able to give them the results of that for comparison. They seemed mildly interested.

They're still talking about how my symptoms may be related to emotional trauma from the crash. I, and people who know me well, both think this is unlikely but we'll see. Even if it is true, I'm not sure what can be done about it because, being autistic, I find it difficult to get anyone to understand the way I think or feel (and that was before the BI!). Turns out they didn't even know I was autistic (would have guessed it was in my notes). So I don't know how helpful psychology would be to me anyway.

We'll see. Thanks for the support, everyone!