Friends, Family & Carers Forum

[Former-Member]

Often a balance, I know @Former-Member , and I am sure you are aware that sometimes things that our loved ones do not see as pertinent may well be and are best mentioned. You could always make an appointment for yourself (or ask for a longer appt if you are going for something else) and explain your own  concerns to GP.   Even if the neuro was not comfortable treating the condition, clearly articulating this and arranging appropriate diagnostic tests with cc's going to alternate neuro may have been helpful to set things in motion.   The GP may also be happy to arrange any such tests for hubby and depending on the result may be able to get you in for an early appointment (or send you to A&E). It might well be your GP is unaware that neuro 1 is not amenable to treating acute conditions and knowing this might help them in their clinical practice with other patients

Asking for clarification around medication too might be helpful Sherry - in particular to check if there are alternatives available to the bloat/rage option.  Sadly sometimes there is not and weighing up risk v benefit is all that can be done. 

I have found that if I don't speak up I feel I am sending myself a message that my opinion doesn't count - and I can end up feeling quite resentful which does not sit well for future appointments.  The opposite is true - my opinion does count and in the case of my husband if I understand things (which often includes the need to talk about things) it makes for better care for him.  As you are also aware, being the primary caregiver, we know the patients far better than the doctors, that psych patients are notoriously bad historians and that we can offer insights that can prove pivotal in their treatment.

[Zoe7]

I do hope your GP hs some frther ideas on what to do for hubby @Former-Member It is quite disgusting that you were both treated with such contempt in what is understandably an incredibly difficult position for you both. I know there is nothing more you can do but see your GP and hope to get into this other neourologist 

Such a lovely thing you did for your brother and his wife - a lovely reminder of their girls lost and something that shows them you are thinking of them in this really tough time 

[BlueBay]

Dear @Former-Member 

I really hope that your GP can hrlp you with your husband. Thinking of you at this tough time. 

Hugs ❤️

[outlander]

Big hugs and much  love @Former-Member  i dont know what to say thatll help but im hearing you and walk with you through this. That pendent sounds so beautiful though ❤

[Former-Member]

Thanks @Owlunar @Former-Member @Zoe7 @BlueBay @outlander @Faith-and-Hope @Shaz51 and others.

Yes Darcy, you are so right - definitely a balancing act. But as you say, it is me who lives with hubby and thus the only one who knows exactly what is going on, how badly affected he is, etc. I will definitely talk to his GP tomorrow about possible alternatives to the high dose steroid meds he was on before, and and currently on a low dose of, pending proper diagnosis. Although I believe there are few, if any, alternatives if it turns out to be the encephalitis again. Its the go-to option and most effective. So it will be the roid-rage all over again ... urgh. Hopefully they can find something else wrong with him, and he wont need the steriods to bring down inflamation. 🤞

Thanks Zoe, yes my brother and SIL received the gift I organised for them yesterday. They seem to love it and said they would put it in a special place as a remembrance of their lost daughters. 😢🌹

Oh BlueBay ... I hope so too. I am fast running out of physical and emotional energy in trying to deal with it all right now. Will have a good long talk with hubbys GP tomorrow. He is usually very accommodating when it comes to time. Unfortunately it also means he is notoriously late with his appointments. But he doesnt escort you out the door after 5 mins, and he always listens. Plus the good thing with him is that you always walk out the door knowing he heard and is trying to find solutions. Hoping he can do something tomorrow. And its also possible he may be able to help in getting in to see the other neurologist in the City earlier than normal. BlueBay I am thinking of you too as you continue to battle your BP and MH issues.

Outlander - Thanks sweetie. I know there isnt anything anybody can really say. But knowing you are listening and offering emotional support is very comforting. Clearly I did not describe the preserved rose very well. It isnt a pendant. It is an actual preserved rose. Although I said it was red, I actually meant pink. Pink for girls. Its an actual rose on a 12inch stem and is preserved and then has 24 carot gold on the edges. A lifetime keepsake.

Sherry 🌺

[Former-Member]

Here's a picture of the gold plated rose I gave my brother and his wife.  The one I ordered looked very much like this and comes in a lovely display box as well.  Anyway I loved it, and I think they do too.  I'm glad.

Perhaps more like this one ... only in pink.

Sherry 🌹

[outlander]

WOW @Former-Member that is really beautiful. ive never seen or heard anything like it. something very special indeed and i really hope they like it as well.

[outlander]

@Former-Member

[Shaz51]

wow that is really beautiful. @Former-Member 

My S3 and his partner had tattooed the 3 names of their unborn babies ( triplets they had lost at 22 weeks)  on their arms

[outlander]

@Former-Member how are you holding up?