I'm looking for anyone who has any info regarding this brain disorder (wernickes encephalopathy )??
My husband was diagnosed 5 months ago which included symptoms of nystagmus, ataxia, hypothermia, confusion, hallucinations, stuttered/slurred speech..
He was so bad he couldn't walk or talk and had 21 bags of iv pabrinex in 7 days..
Now he has brain damage...memory loss and an inverted foot with loss of sensation down his left side and can't walk unaided...constant headaches and speech can be slurred and stuttered... some days are worse than others..nobody knows much as apparently uncommon...but he is now registered as disabled and im his carer...
All due to lack of b1 vitamin (thiamine) which his dr did not prescribe...
Hi Poggla, and welcome I wish we were meeting under different circumstances.
I don't have knowledge of Wernickes Encephalopathy but suffered from viral encephalitis almost 4 years ago and it has been a long hard road to travel.
I was in a coma for 3 weeks and hospital for 3 months, the last 5 weeks in rehab. I was told I have recovered extremely well considering I wasn't expected to survive at all, my major organs, kidneys and heart were about to fail because of the low level my brain was functioning at, but I rallied .
I am left with short term memory issues, which are improving, balance, fine motor skill problems, visual problems, lucky here as many are left blind or severely visually impaired, fatigue, and other minor issues.
Have you contacted the Encephalitis Society? They can be a real help as is the Headway helpline, details pinned on this site.
Encephalitis is not known about generally as only about 20 percent of sufferers survive, the swelling can overwhelm the whole brain and be so devastating ,and so many are left with far reaching problems.
I have mainly devised my own rehab programme, the unit helped me learn to walk and care for myself, but I have aided my recovery with jigsaw puzzles, my brain struggled with these at first, I started with toddler ones and progressed to 1000 piece ones, I knit and crochet and paint by numbers.
I find reading less pleasurable now, I can't remember the plot of a book once I've put it down, but audio books are good. I like to garden too when the weather is warm.
I think sometimes it is more difficult for many men as they often have less hobbies to fill their time with but your husband needs to fill his time and keep practising and trying if he finds things difficult.
The brain needs repitition to establish new pathways to replace the old damaged ones, as a child does when learning, and the brain will continue to make these new pathways while you keep trying all through your life, just don't give up.
I find swimming great too, you don't fall over when in the water, and this year I intend to go along to the gym and see what regimes might suit me. I have a treadmill at home as I can hold on when using that.
Sorry for the long diatribe, just a few pointers, come back again if you need more support or any questions, I'll try my best to help.
Acceptance and patience are what is needed, two attributes that are so hard to come to terms with, but you will find us wry welcoming on this forum and very eager to help. We have all either suffered brain injury or are caring for a loved one and understand what you are going through.
Much love Janet xx
Hi janet....Thankyou for your reply....its just so frustrating when no one can tell you prognosis....we have been told that after 21 bags of thiamine there should have been a change in mobility....speech and eyesight within a few hrs or days....just seems that maybe treatment was alittle to late as had an ambulance from home and was dr that admitted him to hospital....my husband is 36 so this is hard for him to deal with...what with a 4,11 and 12 yr old aswel...
They have said he may permantly be left with some inpairment or could take anything for a yr upto 10 yrs...
I haven't thought about encephalitis society....I am in contact with young dementia....am awaiting to see specialist in may....but that will be 9 months after diagnoses...
He did too much yesterday...went for a walk and lastnight was in alot of pain when walking and struggled...I am vigilant but also a worrier...I have been told if he loses his speech, mobility and is dizzy I am to call an ambulance. ...now awaiting an appointment to see nuero about possible epilepsy...He already has a benign essential tremor which is controlled with medication....he's lost all independance but I try not to do too much for him as he isn't completely incompetent. ..and needs some independance for his own sanity...driving licence was surrendered too cos weak left leg....
I hate seeing him upset and there's times I cry...but just glad that his memory isn't complete in paired...that is his main worry...
Sorry for long post...ive had to research his condition and it kinda keeps me going....Some of it I don't like reading but it is what it is...
Xbox is what keeps my husband going at mo...but he likes to get out but after yesterday he won't be going out for couple days because of his leg...can't seem to win either way...and I don't drive. 😕xx
Hi again, I know how hard it Is but your husband has his age on his side. I'm now 63,I was 59 when this happened. It's so frustrating to deal with the impact of all the issues. I no longer drive because of my slower reactions, the world is a very fast moving place and I no longer react quickly enough, but I negotiate buses and trains just fine.
It must be hard too with a young family, I find noisy children difficult to cope with, I have been known to go out with my earphones in as if listening to an I pod as it reduces noise input and helps me cope! I have had to come in from the garden when neighbours children are out playing, I must seem a miserable old fogey at times. Not so, I assure you, I just remove myself from situations difficult for me to deal with.
I have no intellect impairment either which is good news. Make sure your husband learns as much as he can, you also, about his condition.
Physical impairment is much easier to deal with, there are usually ways round most issues, and think out of the box.
Put his energies into doing those things he can do and look for other things to stretch him.
When he has recovered from his problem, walking will help. I like to get out when the weather allows. I've been known to take the bus into Manchester and walk home along the canal, only done it once, it's 4 and a half miles and I underestimated how exhausted I would be, but I shall do it again when the weather picks up.
I, luckily, have not developed epilepsy, it was never mentioned to me, but I am hopeful it won't rear its head.
I find my GP very approachable too, I am the only one in the practice to have suffered from this and they are learning from me, so I share all my concerns and the way I deal with them with the practice.
No one could have foreseen this happening so we just have to get on with it. I am very lucky to have the loving, supportive family I have. You will all be ok, just remember time, patience, perseverance and acceptance.
My love and thoughts are with you
Janet x