Help!

[Ftmz]

Hello everyone. 💙It's been six months since my mother had herpes encephalitis type 1, but she still can't stand up and is physically weak. I don't know if occupational therapy is useful or not? What should I do to improve her physical condition?

[EncephInternational Partner]

Hi Ftmz,

I hope you have found some help and support on here since your last post. Our support email may be able to offer some insight / signposting into your question about occupational therapy.

[e-mail]

Our best wishes to you and your mum.

[kitnkaboodle]

Six months is still very early. Time will help. Outpatient therapies (PT/OT/ST) can be useful, but I find that they usually aren’t, especially in the very early days when one’s brain is still inflamed, and one cannot do the tasks.

[Paula-38 in reply to kitnkaboodle]

I can well imagine that Kitnkaboodle.

[sleepless68]

Yes and physio assessment.I had both before discharged from hospital.Hydrotherapy might help too but need physio to do programme

[Majaa]

I'm sorry about your mom. My brother has also been fighting HSV 1 for 6 months. It is very difficult.Are there times when mom doesn't recognize you, asks to go home, and is already home? Is she sometimes aggressive?

[Ftmz in reply to Majaa]

Hello. I'm sorry for answering you so late. Yes, unfortunately, my mother currently only has short-term memory problems. At first, she didn't even recognize me, but now she's much better and knows the family members. Don't worry, I wish your brother a speedy recovery. And I will wait for you🩶

[cg511cg]

Is she eating? She needs to eat well or she will get weaker.

Occupational therapy was very helpful in my husband's recovery (PT and ST were also very helpful). He had the same type of E as your mother. Got it May 11, 2023. He was in the hospital about 2 weeks then in two different Rehabs until July 30 when he came home. If I remember correctly, he was able to get out of the wheelchair and start using a walker during the later part of July 2023 while he was still in Rehab. Then he came home and mainly used a cane, which he still uses.

He lost a lot of weight in the hospital and in Rehab ..... he just wasn't interested in eating. And he too, was very weak. As he healed, he started eating better, plus I would get him ANYTHING I could think of (his favorites) to get him to eat at least something! He had a lot of chocolate malts!

With E, healing is a long, slow process and is very difficult to watch a loved one go through it. And every person is different in how much E affected them and in their recovery path. I would keep at it - plenty of rest, eating, and continuing with Occupational Therapy. If possible, add physical therapy and speech therapy (speech therapy helps reconnect the dots in the brain).

PS - Did you read the Letter from my Brain on this website? It was very helpful to my husband and I.

[NoMorePD]

Drinking two cups of ozonated water daily has helped me so much. I wish that I would have known about it earlier helps

So much with inflammation and can cross the blood brain barrier

[Wygella]

Absolutely agree with Cg511. It’s a long slow process. The main thing is small steps forward. Letter to my Brain is an excellent read too. I’ve written many posts about my steady progress since having HSVE. I had it nearly 6 years ago. It’s a rocky road, there are unexpected derailments but don’t let them put you or your mum off. Otherwise CG put it perfectly.

[lady2189]

Hi

My husband is recovering from this. He was struck down in March 2024. Its seems he was 'very lucky' in that it was caught early and treated with anti-virals. However, we have long term issues such as extreme fatigue and lack of appetite. I have been giving him the dietary supplement Forticip which has helped. Give it a try.

[Wygella in reply to lady2189]

Take heart. I too was lucky 6 years ago. The fatigue was awful and things like learning to walk, talk, read etc took a long time. I can honestly say now though that although I don’t deal well with stress, still get tired and what I call brain ache if I overdo it, these are minor now and I can drive and do everything I did before, just with the awareness of pacing myself.

[The_Bass]

Hi  Ftmz – I did find occupational therapy useful although it was difficult to come to terms with the things I found difficult to understand. I can only support what so many people rightly say and that’s that “the comeback” does take time and, while I’m not saying the help isn’t helpful, time’s the thing that really really helps as the brain makes new connections.