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Unexpected and upsetting diagnosis

8 replies

SpongeBobJudgeyPants · 11/08/2022 05:36

Recently been diagnosed with moderate brain damage, frontal lobe and cerebellum, from an old work related injury. This is after a year long wait for a neurology appt, then ending up having a brain scan as some symptoms were worsening. My core balance is affected by it, which explains the falling and ability to trip over very little, and not correct it. I had it investigated as the falls were becoming more frequent and doing more damage. I am told that the damage won't get any worse, and there is atrophy in parts of the brain. The injury that would in all probability have caused the most damage was about 35 years ago. I don't understand how anyone can know it won't get any worse, as its been about the last 4/5 years that the symptoms, at least, have got gradually more serious. I didn't think to ask, as I was a bit shell-shocked with what was found tbh. I am of course glad that I don't have dementia/cancer/brain tumour, all of which had crossed my mind. Some of the damage can affect working memory apparently, which I have issues with, which is why I was concerned about another diagnosis. I am just trying to get to grips with it currently. Apparently, nothing can be done, apart from refer me to physio, to do core excercises which should help. I am angry with my former employer, who failed to provide the women with appropriate protective headgear, while providing adequate protection for men, but don't have the energy to take out a claim against them. They were horrible to deal with working for them, and would be worse trying to deal with it from outside the organisation. Some responses to my diagnosis, which I have tried to be just factual about, but not make a big deal of, have been less than helpful. I understand its difficult for som.e people to know what to say, but... I feel a minimum explanation has been required for friends to explain why I now feel safer with a stick to help me correct my balance when I need to. Anyone got any words of wisdom? TIA.

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ClumpingBambooIsALie · 11/08/2022 05:52

I have no words of wisdom, sorry. That's really shit. The whole situation, the fact it could've been prevented, the fact it can't be fixed, the fact you're going to have to do all this work to develop strategies to cope, the fact there's still this worry in the back of your head that it might get worse, the fact that some people around you haven't responded in the best way… it's all just incredibly shit, and I think basically any type of emotional reaction on your part would be entirely understandable.

I hope someone with more relevant experience is along soon but I read what's happened to you, thought, "Fucking hell, that's a really shit thing to happen to someone", and didn't want to leave without posting to express that. I hope the physio is helpful, and that people around you start to accept the things you need to do to stay vertical and safe.

SpongeBobJudgeyPants · 11/08/2022 05:55

Thank you @ClumpingBambooIsALie . That pretty much sums up how I feel really. I know people care about me IRL, but I've just had a lot of 'sue the bustards' responses, and I really can't go there for my MH. Some people have got it tho. Thanks for being one of them x

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SierraSapphire · 11/08/2022 06:06

Really sorry that this has happened to you, I know how debilitating lost a loss of balance can be. My dad had cerebellar ataxia, not really quite sure why, but similarly it's where the cerebellum in the brain isn't functioning properly and it affected his balance.

It may be worth looking at ataxia resources, There's loads of stuff around exercise, and you'll probably find various supplements that may help too. There are some exercises called Frenkel exercises and they are intended I think to build different neural pathways in the brain that gets around the damaged bits so basically using sight more to move as opposed to using proprioception, which is the sense of where your body is in space. You may also want to read the books by Dr Norman Doidge around how the brain can reprogram itself, they're really fascinating, there's one report in one about a man with Parkinson's and about how he's overcome his neurological difficulties by thinking smith movement in a different way. You might also want to look into Feldenkrais which is a whole system of body movement that helps you to re-integrate neural pathways in the body that perhaps got forgotten overtime, useful for all of us not just people with specific difficulties. You can do this as individual sessions or in classes, there is a national body for Feldenkrais teachers that will help you to find your local one.

Have a look at Ataxia UK, They have lots of information that might be useful to you. Flowers

SpongeBobJudgeyPants · 11/08/2022 12:48

Thank you @SierraSapphire . That's all really useful info. I didn't even get bunged a leaflet. I have contacted Headway, but no response a week later, the Ataxia UK is one I wasn't aware of. I am apparently on a 'client lead 12 month pathway' which I assumes mean I have to ask for any additional help, other than the physio. Will add those to my reading list.

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caramac04 · 11/08/2022 12:58

I’ve no advice sadly but like the response from pp’s.
It is shit and I can’t help but agree with you about how can it be known that the condition won’t get worse.
I hope the advice from @SierraSapphire means you are able to improve your condition. As for needing a stick, use one. If you have less confidence without one then it’s very easy to avoid going out and I think that will negatively impact both your physical and mental health.
I hope that you can feel less daunted/frustrated/ angry (or whatever negative emotions you are feeling) as time goes on and that the Drs are right and you won’t get worse.

SierraSapphire · 11/08/2022 15:55

Yeah the NHS diagnosed my DF and basically never saw him again in the 8 or so years until he died (he was 89 not to alarm you!) He got a bit of help from occupational therapy in that they gave him walkers that didn't solve the problem of him falling over backwards! In all health fields there is so much going on outside the NHS taking a much more integrative approach but you have to find the right people and then probably pay.

I sympathise with needing to explain to people too, I'm going through cancer treatment and get sick of talking about it. I'm doing a lot with diet and supplements and fasting and other things alongside traditional medicine and some people are really sceptical and just want to get me to eat cake! I think you just need to have some set answers that are intended to shut the conversation down. I find it exhausting and sometimes my brain just can't cope with thinking about it, it's my illness and I'm not there to make other people feel better or satisfy their curiosity.

SpongeBobJudgeyPants · 12/08/2022 10:18

That sounds a bit rubbish @SierraSapphire . Thanks for all this info everyone. It's helping a lot. Good point Sierra. I need to have a potted history story that I can trot out, that doesn't make me so angry and sad, and doesn't encourage a knee jerk 'sue the bustards' response. I need to remove my anger from the story, as It's not helping anyone at this point. It is interesting that I've had more proper understanding on this thread than i've had in RL. Yay for MN Flowers

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SpongeBobJudgeyPants · 13/08/2022 10:22

@SierraSapphire sorry, I didn't properly take in your situation. I hope you are finding the supplements are useful, maybe it's a bit early to tell? Either way, I wish you luck and Flowers x

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