Improving

[Trisuitmaker]

Almost 3 yrs to the day my wife was hit with HSV. She was not expected to leave hospital. It’s been a 3 year roller coaster

Learning is a problem unlike a fit brain retention of a memory is or was just not working. She does remember to read the labels on the cupboards and look at our “ Memory board”

Recent weeks I have notice she has short memory recalls it’s not everything all the time. They do seem to be getting more frequent

It has bought in another dimension with memory. she is more aware of her problems and bringing some frustrations for the first time She has made some worrying comments. On the upside I have gained a lot of trust making it easier to deal with these low periods

I am thankful I am with her full time. My thoughts go out to those left alone with this dastardly complaint.

[Paula-38]

Hi Trisuitmaker,

I'm so sorry to hear about your wife, I also had HSV encephalitis way back in the 1970's just after my first birthday and I must admit it certainly is a roller coaster (in your own words) and it can take years to improve but everyone is different.

I never had memory problems apart not being able to pick up a TV storyline.

However memory is one of the most common after effects.Hhe sheseen a neuropsychologist apparently they speciaiali in this field or ask her neurologist if they could refer her to one.

In the meantime reminding her about the things she doesn't recall might help and assisting her with thing round the house like keeping things in a safe place, pictures round the house etc are all very useful.

I hope this helps you and your wife.

I am always here to help out if I can.

Best of luck!

[Trisuitmaker in reply to Paula-38]

Hi Paula-38 yes we have been down the Nuero. Route twice. Both have ended with the same result..we have what we have The damage is significant some improvement may occur but age is against her. Well.. I didn’t take her dying and I am not sitting back with these results I work with anything Food ( Diet) excercise memory training. Every spare minute she plays card games on her iPad. “Use it or lose it.”

We are now trying Hypnosis tapes to encourage a full night sleep. The last is proving invaluable to both of us. She sleeps I sleep we are using Glen Harold free app download.

[Ocean96]

Hi Trisuitmaker

Thank you for sharing your story with us! First of all, I’m sorry to hear you and your wife have been through so much but it sounds like you are both very strong!

As someone who has had encephalitis, I experience similar difficulties as your wife does with memory and I find myself very frustrated with myself at times and I sometimes can get frustrated with the people around me. What has helped me is my support system understanding me and giving me space to gather my thoughts! It sounds like you are really understanding and patient which will help your wife massively!

The encephalitis society have a really insightful YouTube channel where you can find some people’s amazing stories - youtu.be/m749Azuj5Ew(Not working as expected?)

[Trisuitmaker in reply to Ocean96]

Hi Ocean96It’s always interesting to me, to hear the other side. It definitely is full time just trying to decide what’s happening in her brain. Sadly last night around 2.30 and today we are experiencing some strange goings on, almost to the point of calling emergency services . Temperature was slightly raise, blood pressure was up, pulse about ok oxygen sats. Ok but she was seeing and feeling things and people touching her she was dizzy, confused, and distressed. I managed to calm her down

After about half hour got her to sleep until about 9.00. She has eaten ok and drinking but I can see she’s not doing well I caught her crying a couple of times. I have to say I am keeping a close eye on her today

[Ocean96 in reply to Trisuitmaker]

Hi Trisuitmaker

I'm so sorry to hear your wife has been unwell the past few days. Definitely contact the emergency services if you are ever very concerned!

I can only imagine how hard it is for you, I hope you can make time for yourself to get some headspace