Recent diagnosis

[HollyJG]

My dad was recently diagnosed. He refuses to eat. He can communicate if we ask questions, but mostly sleeps and tells us he doesn't want food, often saying everything tastes bad. Outside of a feeding tube, has anyone overcome this? He's 85 and I'm afraid that he will not fare well much longer.

[Tuesando]

Dear Holly

My partner had encephalitis 4 years ago. He also suffered from parosmia afterwards. Everything smelled and tasted bad. It is a huuuuge problem for the patient and it can take years to go back to something that resembles normality. We did two things. We switched our diet to very very plain things. Lots of rice pudding and risotto. No garlic and onions. Plain rice and plain potatoes. Nothing fried in the house. No spices and no complex tastes. Bread and mild cheese. I personally like strong tastes and spicy food but that had to go. The same goes for cleaning products and soaps. Give him some options and ask him what he prefers. Remember you can choose for him as you don’t smell the same anymore.

The second thing we did was to buy a smell training set from the company below. Four small jars with essential oils. Your dad would need to train twice daily by sniffing the four basic smells: rose, clover, lemon (and one more I can’t remember). He will not see any improvement for many months. He may not even be able to smell them in the beginning but it Does work. But it can take years. So keep him to it. The NHS recommends it.

I feel for you but trust me it gets better but can take several years.

fifthsense.org.uk/parosmia-...

[GIL910]

Hi

My mom is the same. She was diagnosed with viral encephalitis nearly 3 years ago.

After her long stay in hospital she did improve for an about a year.

But now she spends more time sleeping. She said her food tastes too sweet or salty.

She is having more tests and has had more seizures.

A brain injury is complex and consultants don’t seem to fully understand the condition.

[EncephInternational Partner]

Hi HollyJG,

I am so sorry to hear about your Dad.

Have you come across our website? We have lots of information about Encephalitis on there as well as links to get in touch. We have a support line and email support along with virtual support groups which you can attend on zoom. These allow others who are struggling with loved ones to come together and talk about their experiences

Our website is encephalitis.info

Please do get in touch and we'd be happy to help where we can and put you in touch with others.

Alex

Encephalitis International

[Gandalf2]

Hi Holly, sorry to hear about your father. Losing sense of taste and/or food tasting bad is not unusual. Damage to the temporal lobe my be the cause. My sense of taste has gone but I can smell things. I'm 74 and started with Enc. 4 years ago. He could try Fresubin liquid drinks, full of protein and fibre. G2

[Neuro-Gee]

Dear Holly, I just wanted to wish your father well and supporting you from this forum. Stay strong and positive but also look after yourself 🙏