My mum has been suffering with dementia like symptoms since she had HSV encephalitis in March. She is getting increasingly worse and is extremely distressed. Therefore, she has now been referred to Neuropsychology. I believe they are considering autoimmune encephalitis/dementia as a possible diagnosis.
Is a six week wait to be seen by Neuropsychology normal in such a case? I am concerned that any further delay after months of deterioration risks irreversible damage.
Thank you in advance for any information.
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Magdalene22
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Hi Magdalene22, I'm sorry to hear your mum has been struck down with HSV encephalitis and is suffering from dementia. Enc is a very debilitating condition working on many levels and takes away for many the usual resilience and energy that enables recovery. HSV enc is a very rare condition and support and expertise may prove sparse, keep p;estering. You may find the Encephalitis Society the best option for information and support, this forum and the internet can also be of great help.
You don't go into great detail about the effect the dementia has on your mum so it's hard to suggest options and I can only relate my own experience. I have auto-immune encephalitis, have had seven seizures and seven emergency hospital admissions, have been sedated, sectioned and placed in an induced coma on drips, wires, tubes and ventilation. I'm being prescribed steroids, anti-seizure tablets, anti-biotics, morphine, pain relief and other medications almost too numerous to mention. You may suffer some side-effects ....
Getting your mum on the right medication is an important step and hopefully this will have been achieved by now. A restful and familiar environment helps with memory loss. I forgot I was married or that my parents had passed away, neither could I quite recognise myself in the mirror or remember how to walk, shave and do other everyday tasks. All this had to be relearned.
When people tell me things I immediately forget them and everything has to be written down. My wife deals with all the shopping, appointments and transporting me back and forth. I do what I can and try to keep up with events. Without her I'd be confined to hospital/nursing home and shuffling around in a dressing gown. Thankfully I can still speak, hear, understand, walk, think and write. Sleep is a great escape and a restful and familiar environment very reassuring. I may have already said that - typical! One has to see the funny side.
Almost a full recovery is possible it seems but it takes a long time, at least a year and diet, exercise and keeping involved are a vital part in my experience. Music, reading and doing one's best within sensible limits helps a lot. We went out for a drive the other day amongst some of my favourite haunts and it was distressing to discover most had been forgotten. I had also lost the ability to map read and navigate - but we managed, another hurdle surmounted.
I haven't taken the vaccine as it seems too risky, I had a bad reaction to the flu vaccine years ago and with my lowered immunity it seems likely the vaccine would cause problems. At least it's still voluntary at the moment (I'm in the UK).
The neuropsychology support has finally come after about 11 months I think and consists of talking, practical assessments, a white board and pens, memory techniques and maybe more to come.
I'm in pain and flagging now, so will have to sign off, adios and all the best. Hurray.
Thank you for taking the time to write your informative reply. Also for sharing your experience with encephalitis.
My mum's symptoms are currently mostly psychological. Although she has memory issues including problems with her short-term memory.
The main issue is that she never really recognises her home of many years. Along with often not knowing her husband and frequently her daughters. Consequently, she has been suffering with paranoid delusions. Such as, believing she has been kidnapped which leads to her being desperate to leave. Of course this is all extremely distressing, not least of all for her.
The doctors believe this is obviously a direct consequence of her illness in March. Particularly as she had no symptoms previously and they have also shown a rapid escalation in severity. Therefore, they have referred her to Neuropsychology. Through them we hope to have a diagnosis and a plan for her treatment and rehabilitation. As it is not dementia we really hope that the more extreme psychological symptoms can be reversed.
Hi Magdalene22, Thank you for your reply. It rings a couple of bells. When I was sedated and coming round I was convinced the staff were all impostors, androids copied from actors on the TV dramas. I thought that they were keeping me on a space station near Earth and taking my DNA to create more androids so that they could take over the planet. That symptom, or something like it, is called the Capgras delusion and is partly why I was sedated and sectioned due to my attempts to resist the staff.
No visitors were allowed due to Qovid so I didn't have any problems recognizing familiar faces at that stage. But I missed my wife and kept expecting her, looking out of the window and waiting for her phone calls, which were allowed.
I also had the impression for a while that I was the source of the Universe and that everything was created by me just having a Divine thought. If I lost concentration it would all collapse. Again, quite unusual and a big responsibility.
Eventually things settled down, medications were altered and things began to take on a sense of normality. I started to walk on the ward usually for an hour back and forth , the staff didn't mind and it served as a mood changer, avoided bed sores and helped with my metabolism.
It takes time, a long time, and gentle steady progress is all that can be expected. Eventually arriving home I struggled to climb the stairs and a walk to the end of the road needed two days to recover. Now we walk every evening for a mile or so going a little further each day, I'm coping with talking to strangers and coping with the odd setback, Kids on skateboards, dogs and speeding cars tend to unsettle me - I guess I'm just getting old! (71)
Music, reading, YouTube videos of my teenage years pop stars and relaxing are my favourite things. Furry animals, flowers, woods, streams and the wonders of Nature are great for lifting one's spirits. It's all been an amazing experience and although the memory loss has its downside, it also means I've lost a lot of the negative memories too. So not all bad.
I'll sign off now, keep on keeping on and you should start to see some improvements.
P.S. My wife recorded me talking when I was delirious and very convinced I was making sense. When she played it back it was hilarious and helped give me a clue as to how out of touch I was, maybe it helped.
Thank you for sharing your experiences. The brain is so incredibly complex, it really is extraordinary how it tries to makes sense of things. Mum has also had various unusual delusions. Many are recurring. She has been particularly obsessed with having a connection with schools, teachers and stations. As well as getting very distressed that children are missing (possibly younger versions of my sisters and me).
Along with, on several occasions, thinking we were pretending/acting, in a play, basically that this isn't real life.
I’m so sorry for what you and your family have been going through. HSV encephalitis is really traumatic and then the after effects like you’ve described are very distressing. How are you feeling about this all? Do you have a good support system?
6 weeks is a long time to wait especially when your mothers symptoms are hard to manage at the moment. Have you ever spoken to the encephalitis society about your concerns? They are a fantastic resource for information but also support as they understand exactly what you and your family are going through. Please see this link to get support - encephalitis.info/support
Thanks for sharing your story with us. We all understand and support you
Thank you for your message of support. Six weeks does seem a long time, especially as she has already been suffering for months. Although, I do realise unfortunately that the referral to Neuropsychology has only recently been made.
It has certainly been deeply distressing for all of us. As I'm sure is usual with encephalitis it has been a great shock. Mum was taken seriously ill very suddenly and is obviously currently behaving very differently.
Thank you for the link. I believe my sister has contacted the Encephalitis Society for advice. We have certainly looked at some information from the website. Therefore, we will definitely keep in mind the option of support from them in the future. Presently we are mostly focused on the next step with Neuropsychology.
Thanks so much for your reply and again, I'm so sorry for what you and your family have been through. I hope things are okay at the moment and delighted to hear your sister has been in contact with the Encephalitis Society as my family and I have found them so helpful!
Thank you. Your message is much appreciated. Things are still really difficult. However, we have appointments coming up. Therefore, we are really hoping these will help mum get the treatment she needs to aid her recovery and rehabilitation.
It's such a big and sudden change when something like encephalitis happens. It's definitely an adjustment. When I was recovering from encephalitis it felt like I was learning how to live again and adjust to life now with the after-effects of encephalitis. It felt overwhelming at first but with the help of my doctors, the encephalitis society, and any additional local supports it made things a lot easier.
Try take day by day, week by week. Recovery will be slow but patience is so important. My family join meetings with the encephalitis society and meet other family members affected by encephalitis. They find it really helpful!
Definitely see how the appointment goes with the neuropsychologist and one thing I would advise is write down what you want to say to the doctor, and concerns or symptoms you'd like to talk about!
Thank you so much for your helpful advice. We will definitely consider the various support options available. As well as making sure we consider what we want to discuss at any appointments.
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