I had BM in July 13. My balance is still re... - Meningitis Now
I had BM in July 13. My balance is still really bad and I cannot focus properly when walking & looking ahead. Does balance improve over time
Hi Kazy, My experience has me saying to a degree I have had some improvement over the past 2 1/2 years. However, I still walk like Captain Jack Sparrow from Pirates of the Caribbean movie. Dr told me that I had vestibular imbalance in both ears. He said that he was impressed that I was still able to walk with that amount of damage. My life has been altered and I fear that it is permanent so I just focus on what I can do and forget the rest. Best Wishes & Kind Regards, Jeffery
Hi Kazy,
I had BM 6 months ago, I am definitely better now but I too still have balance issues, I run into stuff all the time and usually walk like I'm drunk. I hope it will improve but it seems things improve so slowly it's hard to tell until one day you go "oh wow! That's gotten better" I don't know what to say other than try to stay positive. Best wishes,
Connie
Yes, your balance will improve!!!! I remember my long hesitations walking onto an escalator. It took about 5 yrs for my balance to feel normal again.
Hi Kazy, its early days for you I'm afraid if the rest of us are anythig to go by. I too had dreadful balance and now (4years on) I think its almost back to normal. If you ask your local friendly physiotherapist they will give you some proprioception exercises (a sort of re-training programme for your balance) you can do "safely" at home to help your balance recover. It does though, be re-assurred. I so remember the days of bending down to tie my trainers and then almost falling over when I got up! Email me if you have no joy with the proprioception exs I can send you some.
Hi Kazy,
I've had bm twice, with vestibular imbalance in one ear diagnosed after the first bm.
My specilaist said that it would improve as the brain learnt to compensate for the damage. I would say that within 6 months I noticed improvement, but it is slow and gradual. The thing that really helped me was always keeping my eyes open and looking exaclty where I'm going, (sounds obvious!) and running my hand up against a wall or anything whenever I can. Particularly I always did this on stairs.
Three and a half years after my first bm, I'd say my balance is ok, as long as I'm looking; as soon as I take my eyes away from what I'm doing, its more dificult.
Its possible to google vestibular imbalance exercises for suggestions to do at home that may help.
All the best!
Thanks so much for your replies. Its so good to know that my balance may improve. I have an appointment with the hospital at the end of October as Ive lost 60% hearing and have tinnitus and I think they might be looking into my balance so I will now ask about vestibular. I suppose I thought that the balance would just get better quickly and Im probably being really impatient as until I came on this site I didn't realise that the after effect of BM take time. I have no recollection of getting BM it all happened so quickly (thank god for my mum who got me to hospital as I arrested on arrival) . I woke up two weeks later and everything has changed, and its weird cause I just feel different in myself, but to everyone around me I look better. But doing everyday stuff like walking the kids to school and cooking are hard work and really tiring. I know Im lucky to only have hearing loss and balance problems because it could have been so much worse, but going from a person who was running around constantly after children and running two businesses and always on the go to struggling with the everyday stuff and relying on family to help me is a lot harder than I thought it would be.
thanks again for your replies, Im so glad I found this site xxxxx
Hi there I hope you are having a good day today Yes believe me things do get better and what doesn't you learn to live with I am 3 years past BM and it has been a horrendous experience I was fortunate to have intense physiotherapy for 18 months but it took 30 months before I could walk without a stick Now at 36 months on I still struggle when its dark I find it difficult visualising where I am walking but that is also getting better So have faith in yourself and on a good day you go for it - best wishes - Cassie
Hi Cassie, today is a bad balance day so haven't attempted to walk to dog, and am taking it easy around the house today. Im wondering whether I should ask my consultant about physiotherapy when I see him at the end of the month, as the balance is as bad as it was when I came out of hospital in August. Hope your having a good weekend.
Kazy xx
Hi Kazy
I don't think I can add any more to the good advice you've been given and in my experience after going ... splat ! ... in my daughters playground .. splat ! ... in the town High Street .... and Splat ! .... in a horse show (where I fell right underneath my daughters horse who thankfully just looked down in astonishment at me on the floor underneath him and didn't try to kick me as I lay there hoping the floor would open up and swallow me lol ...... I think SunflowerGirls advice is spot on ...... keep your eyes open and look where you're going.
I got really distressed with my falls, which were in quick succession and highly embarrassing, you just have to find a way to cope and for me it's a matter of carefully does it and watch my step. I also tend to hold my husbands arm if we are out walking, that helps and it's looks quite "normal".
Re your other points ....... " I just feel different in myself, but to everyone around me I look better. ..." That's hard because that's where I'm at as well. Get your family to read this site though because then they will get more of a feel for themselves with how things are for you.
"................. but going from a person who was running around constantly after children and running two businesses and always on the go to struggling with the everyday stuff and relying on family to help me is a lot harder than I thought it would be ...." Again, me too on that one and it's not easy adjusting to that. I've had to accept my limitations and that's been hard.
" ...... Im so glad I found this site." ................ I wish I had found this site sooner because it's helping me to understand more about my illness and to accept things a little easier. I've not been a member on here for very long but I can certainly see that the support and advice is excellent.
Wishing you well in your recovery xx
Hi,
Thought it was only me., as I'm sure most of you feel/felt. One looks fine but...............! I suppose one just has to keep at it.
All best wishes.
Corps
Balancing I found was one thing thatI didnt get much information on from my doctors. Two years ago I became ill with MB. I lost my hearing in both ears but luckily a year ago in June I had a ear implant on my left ear and have partial hearing on that side. One thing that I was told that doctors dealing with this issue dont want you drving with balancing issues. I decided in my mind that I was going to walk again but it wasn't easy. I started out on a walker and fell quite a few times with totally wiping out two of them. I kept on going and have went to a cane . On canes the bottom does wear out so you have to be careful because it becomes slippery and can cause you to fall. I have switched to the Hurry Cane model with the 3 pieces on the bottom for the safety. I don't feel myself that I will not be able to walk unless I have a support but everyone is different They say that pratice makes perfect so keep on trying and keep up the faith.
Hi Kazy yes do ask for a Physio referral initially I was referred through Ocupational Health at work and had weeks of acupuncture for muscle spasm and pain I was then referred to a Neurologist who diagnosed that I had a brain injury it was then I was referred to a team who specialised in brain injury and through them I received therapy from a physiotherapist and a occupational therapist and a psychotherapist - they were my life line - so yes please ask for help and be honest with your Dr I actually asked my GP how many people he had treated with BM his answer was none I was the first - so the more people you can get on your recovery team the better - take care
Hi Kazy I had Listeria Meningitis & encephalitis in Feb 2013 & only survived thanks to the good old National Health Service & 3 months of very aggressive antibiotics. The last MRI scan I had showed that I have been left with some scarring on the cerebellum. Apparently this is the bit of the brain that controls mobility, balance & concentration. These are the 3 things I currently have problems with. I have lost quite a lot of muscle strength & get easily exhausted. I feel quite disorientated when I spend time concentrating on things for example the computer, reading, knitting even talking & really concentrating on another person. I feel quite vunerable when out walking on my own especially when crossing the road as I can look both ways at the kerb but don't seem to be able to look both ways whilst crossing. When I'm tired I too appear to be drunk too & I am told that it is the cerebellum which is affected when you have had a drink or two so the scarring obviously has the same effect.
As someone on here has said escalators are quite difficult. Stepping on them going up is ok but going done is a different story! They once had to open up a disused staircase for me at a London Underground station as I was physically unable to get on the down escalator!
Saying all this I am slowly improving & feel quite positive, a lot of this has been due to the help of a fantastic private Neurophysio I have found. He has helped me so much & has given me exercises to challenge me. I hope you too can find someone in your area to help you & hopefully you will improve too. I think the main thing is to accept that we have all been seriously ill & that we will take time to recover, maybe not completely but to reach our full potential. Be kind & not too hard on yourself is the best advice someone once gave me. Hope this helps & give yourself time x
I'm the one who mentioned the escalator hesitation and yes, going DOWN was the huge problem! Here's how I solved it.
Think of the concentration you've previously (before BM) used in an organized school race. You know: On our mark, get set...and THEN those seconds preceding "GO!"
TOTAL, DEEP concentration, waiting for "Go!"
THAT's the level of concentration I needed to regain my balance. Altho I was still using a walker in the hospital, my dr told me NOT to use one when I was released. Once home, I shuffled along, VERY slowly for 6 months. Finally I was able to return to work...a year after being struck down with BM.
Ten yrs later I was still wearing open sandals as NOTHING could touch my toes (stumps really) area, because of the extreme pain.
As an example of improvement, now...this week, 35 years later, I'm modeling in an exclusive fashion show...in HIGH HEELS. I will tolerate the extreme foot pain while on the runway...and then change right back into my ugly flats.
"I can do ANYTHING for a limited amount of time" has been my post BM motto over the past 35 yrs. It's gotten me thru a multitude of challenging circumstances.
Give yourself a few years to partially recover...and then plunge back in!!!!
Thanks ignoreit for your escalator advice. The ready steady go method sounds as though it would work, I'll try it! I also find it helpful if there are other people I can just follow on down which means I don't have to look at the long expanse of shiny striped metal disappearing away from me. I am determined to master it & not avoid escalators for the rest of my life!!
Lots of encouraging advice & support on here which is great, thanks all
hi all
From my experience my balance is no better know than when i had BM
on the 23 November 2013 it will be ten years since i had it i have to walk with crutches and use my mobility scooter to get around
Even with the crutches i fall last time i manged to break 3 ribs and i have damaged my shoulder and i am awaiting surgery to put that right
i can manage about 30 or so steps before my head goes
all shaky and i have to rest
but as far as i see every case of BM is different
so just good luck to you all what ever it brings
sorry have to make a correction
i had Bm 23 November 2003
not as stated if it was 23 nov 2013 i think it would be brilliant to know in advance so we could try to do something about before it happened lol
I totally understand the feeling of being somebody else inside of me. On the outside I look fine, even with balance issues (although mine aren't as bad as some of yours), but in my head... Omg, it's never quiet anymore the tinnitus can be overwhelming, I'm always dizzy, but focusing on one spot helps and not holding my head in a couple of positions that will bring on the spins helps. I've just learned in time what those are. I'm beginning to accept that BM never really goes away, things get better, symptoms change or go away only to be replaced by a different one. It's hard at times but I try to keep positive, and I try very hard not to allow myself to go inside myself too much or I become depressed. I am truly fortunate to have come out of this as good as I have. I had listeria bacterial meningitis which I understand is quite rare.
ignoreit
I'm the one who mentioned the escalator hesitation and yes, going DOWN was the huge problem! Here's how I solved it.
Think of the concentration you've previously (before BM) used in an organized school race. You know: On our mark, get set...and THEN those seconds preceding "GO!"
TOTAL, DEEP concentration, waiting for "Go!"
*************************************************
Well that will be one method of identifying fellow BM suffers who are on this site I suppose lol
You do realise that if I'm at the top of an escalator trying your ....on your mark ... get set ... GO method and I happen to see someone else using this same coping strategy then I'm likely to fall head first down the escalator laughing.
Sorry ...ignoreit ... not joking about your suggestion, which is an excellent one and one which I'm going to use, it was just my sense of humour when I read your post lol xx
