Absolutely right. When my mom was diagnosed with dementia it was the same initially see what she needs then vanish once she was means tested and paid her contribution towards things, like walk in shower, stairlift, then my eldest brother who was in his 70’s at the time took on the caring role between carer getting her up and putting her to bed, half the time they forgot to put her hearing aides in! Didn’t wash her hair for over a week until he complained. The breakfast was always cereal (not toast as it took longer…apparently) left to feed herself which was messy. It’s a nightmare minefield i find
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I am sorry but not surprised to hear this, Sue.
A fatigue clinic specialist has just diagnosed me on a video consultation with FND, which could explain why I was not given much hospital help, - even though I did have two Stroke events at some unknown point, - but the lack of after - Care your Mum experienced is very sad, and difficult for you and your brother.
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@Shorn I too have been diagnosed with FND bought on by my stroke apparently. Are they referring you to neurology? I have had no help with FND at all but it’s like everything it is a postcode lottery. I know they don’t have resources for everyone & everything but I often think if they helped more in the early stages some of us wouldn’t need the help in the latter stages.
Interesting how they diagnosed you over a video consultation.
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Yes I asked some time ago to be referred back to Neurology as I was discharged from there more than once. After I had changed my GP practice and made a nuisance of myself at the new Practice they did more tests and X rays , and then they made a new referral to Neurology. In the meantime, a consultation with the Fatigue Clinic, which was originally suggested by a Neurologist over 2 and a half years ago (but someone at the previous Practice refused for a long while to do a referral) finally came through (they tried to do one with me in February but their technology wasn’t working) . It was this Fatigue doctor, who was young and kind, who again mentioned FND and this time it was explained to me , and I realised it corresponded to the attacks I was having . I had originally thought they were were TIAs and I kept on going to A and E. They are extremely painful and frightening but it’s reassuring that they don’t seem to cause as much permanent damage as repeated TIAs. The Stroke Helpline have suggested a couple of patient organisations for people with FND, but I don’t like Facebook so have not joined any yet, but I think I will need to join it though. I don’t know if it’s a postcode lottery or just a real muddle! I think my new Practice may have more funds at their disposal or maybe they are more knowledgeable about Stroke . My former GP Practice used to be good.
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FND is still a relative unknown and most GPs know little if anything about it. One website I recently found useful was NHS inform Scotland. They had quite a bit of info which has helped me understand some of what I experience.
FND can mimic stroke symptoms & you should always get them checked out but it is good to know that what you’re experiencing isn’t causing permanent damage.
Best wishes
Ann
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