Rant! How much longer?

[Cornishwaves247]

So I have cleared eight months and I'm still waiting for my eyesight to fully recover, my balance to regain and my walking to improve... I'm struggling with this super slow recovery. I must sound like a broken record as it's not the first time I have ranted bout these three concerns. I think it will be a knock on affect! When I get my sight fixed the other two will follow. I do believe they will improve the question being when really. I'm tired of plodding along with it now ☹️ I just want to wake up and something has improved!

[Kirk5w7]

Snap, me too.

Howver life goes on. Im at 6 years now and am still waiting, no not really id have missed 6 years of my life if i’d done that.

You gave to get on with things or this is going to rule you.

I know its not that easy we cant just will it away, but you have to consider is it going to get better?

Some of my days are better than others but its amazing what i can do if i make myself.

My turning point was with my vision therapist, she helped so much. My vision is damaged irreparably, i have lost some peripheral vision and i also suffer from vision neglect. I have been taught how to compensate for the visionloss and my balance and walking improved so much. Its not perfect and never will be and some days are still better than others. I didnt wait for referrals on the nhs, i sought things for myself.

In fact the nhs considered my vision ok (within acceptable parameters) so that wasnt going to happen.

Im going to post this now and read your previous threads.

Im not saying my way is the best way but i had to do it or id have gone mad, its not good waking up with that hope in your heart and having it dashed every day.

Ok Janet

[blackperil in reply to Kirk5w7]

How did you get access to s vision therapist?

[Kirk5w7 in reply to blackperil]

Hi Black peril,

I searched for one near me on line, googling vision therapist. It was private though but not unaffordable considering the help i got. Within the parameters you would expect, it was £60 an hour. After an initial consultation fee.

Janet x

[stedman in reply to Kirk5w7]

Hi,

I no longer remember how long ago I was diagnosed with Ataxia, The Neurologist told me it was degenerative, and it is. I am no longer the person I once was: 20-20 vision, strong fit and able, liked cricket, football and motor competition. Now. problems with balance, walking, speaking, lifting, gripping. Strange though, I can think clearly, my Brain seems to be O.K. ;-))

I sleep well, eat well and potter in the workshop rather slowly, I do a days work in a week and get very pleased when it turns out O.K. Regular walks will start soon to improve my mobility which is essential if I am to improve my workshop output.,

I know when spring comes my outlook will brighten, I will regain a little confidence and take things by the scruff off the neck and give a good shake, I call it attack-sia.

Keep smiling, who knows what a new day will bring?

Stedman

[Cornishwaves247 in reply to stedman]

Hi Stedman,

I have not been diagnosed with ataxia though it has been mentioned by physiotherapists a few times along with the vestibular system. I’m not sure if mine are effected. I have read they can be through BI. I’m seeing a neurologist tomorrow so I’m going to mention these two possible issues. I don’t always think they know, and you get better answers talking to similar folk 😊 I have nothing affected with the way my brain functions too. It’s nice to hear your same on this page as everyone seems to have their memory affected. Thank you again

[Kirk5w7]

Back again, reading some of your posts and the replies youve alredy had, i think this is all normal recovery.

Some recover quicker and others are left with residual problems because everyones brain injury is different.

You are right though , a lot of your balance and walking issues will improve when your sight does.

Note i say improve because i cant promise anything, and no one can, not even the professionals.

So, you need the exercises to improve the way your eyes work, the vision therapist told me it was all about joining up your sight and vestibular system again they often get out of sync with BI.

I cant replicate them for you here it would take too long, but in the 6 appointments i had with that lady i amassed a file full of exercises, some of them just my eyes and others like childrens games.

The neurologist should be able to point you in the direction of the right physio to help you.

I had to wait for my vision therapist, she was a physio attached to an optician and dealt solely with children withASHD issues and people with BI issues but she was private, because she had a 4 month waiting list.

I felt in control though, with the nhs i wasnt getting anywhere. I hope your experience is better.

The thing is it hasnt cured me, just taught me how to manage and live with the problems.

Its March now, hope your appointments come soon.

Janet x

[maya72 in reply to Kirk5w7]

Hi Janet , I have balance problems after elective clipping. With my neurologist I know I wouldn't be able to get anywhere. It takes me 3 month to beg him to give 24 hour eeg. They just put on me label stressed. Now I developed more neurological issues as they found out some spiky and sharp brain waves which they now agreed to put me on anti seizure medication. If any chance you give us detailed of this private ophthalmologist, as I feel that it comes from my eyes as soon as I put glasses I feel unbalanced. I still doing some exercises just take from Dr GOOGlE. As my referral to physiotherapist still didn't get , I called them in December the secretary said we got it but we don't know yet. Again 2 month later I called them They answered the same. At the moment my big issues when I am sleeping my brain is vibrating . So upset.

[Kirk5w7 in reply to maya72]

Hi Maya

Sorry about the delay

John P Glover

45 Compstall Road

Romiley, Stockport

SK6 4DB

0161 494 5000

That is the name of the optometrist I used, he is the only one I found near me in Manchester he has a website johnglover.co.uk

You may be able to get more info from them.

I googled vision therapy in the UK and searched for what I was looking for.

Luckily this one was brilliant.

I had also been looking at private physiotherapists and I was contemplating contacting one who advertised help with balance issues, then I found the optometrist.

Good luck with your search.

Janet

[maya72 in reply to Kirk5w7]

Thank you Janet. it is so kind of you. I will try to contact them but I am based in London, still will try.

[Kirk5w7 in reply to maya72]

Hi Maya,

I googled vision therapy thi morning and came up with quite a few sites where you may find more information and details of practitioners close to you xxx

J

[Cornishwaves247 in reply to Kirk5w7]

What part of your brain got damaged/affected?

[Kirk5w7 in reply to Cornishwaves247]

Hi Cornishwaves i had encephalitis which affected the left side of my brain and the swelling extended down to my cerebellum. So bad that at worst my brain activity was very low and they expected me to suffer multiple organ failure.

Anyway here i am, i had to learn to walk and care for myself again.

I likened it to rebooting a computer but some of the files were corrupted.

Ive tried to look at how babies and children learn and mimic that, lots of repitition. What is difficult with adults is that we dont do the crawling practice that babies do because we just expect to walk. But its a long way to fall when you are an adult and that inhibits us. The balance will get better but its practice thats needed.

J

[Cornishwaves247 in reply to Kirk5w7]

Sounds Nasty. My problem is in the left cerebellum. It’s taking a wee while to sort itself out. I’m confident it will. Did you struggle with any of the other symptoms I have mentioned?

[Kirk5w7 in reply to Cornishwaves247]

All of them cornishway but i never once thought i wouldnt win through.

I do have my down days but theres usually something else going on for example a cold or virus im fighting. I have found that sinusitit makes for dreadful days but i have a steroid nasl spray that helps with tgat.

I also suffer from pressure headaches, like migraines with no pain, just an inability to function for the duration, usually 2-3days

But im trying new medication prescribed by the consultant i had at the rehab unit. I can go back to him if i ever feel that i need help, and he is hopeful this will help. Its pregabalin.

My actual diagnosis was PRES which he had only seen 3 times before and i have recovered the best😄.

However i can suffer from it again, it is linked to high blood pressure, and i have been hospitalised once since that original time while they had me under observation because it was suspected that it was happening again, but luckily no.

But i do have a good measure of independance, travelling alone to my daughter in Eastbourne and also a visit up to Glasgow too. I dont drive anymore as i dont feel i have the reactions necessary now.

I hope ive not bored you, im happy to advise if you feel i can help.

Keep up the good work and dont give up.

Janet xx

[Cornishwaves247 in reply to Kirk5w7]

Thank you Janet for your reply. You have by no way bored me.. I liked reading your story. Im fortunate that I don’t suffer with headaches. I did for years before my first bleed, not at the back of the head though which is where the incident is. I’m so glad they have calmed down. Im waiting on my brain to stop with its constant moving. Maybe it will when my eyes correct fully, who knows... did you have this feeling of the brain being unsettled?

[Kirk5w7 in reply to Cornishwaves247]

I had sensations of shaking, like you see someone suffering from Parkinsons so i used to be constantly trying to make it stop. The vision therapist, who seemed to be the only person to believe and converse with me over my symptoms assured me i was not and a lot of those kind of symptoms were actually not happening. It was my brain rewiring and sending out “ghost” messages.

So i learned to ignore it and only feel it now when i get overtired.

But no i cant say i have had the feeings you speak of, i sometimes think we become hypersensitive to every little thing that before we would have ignored. We dont want to have to go through the same again.

Janet

[Cornishwaves247 in reply to Kirk5w7]

Hi Janet, like you when I'm overtired the body sensations are definitely worse. Is this feeling pretty much gone for you now? How long did you have to tolerate it? I'm month nine now, though I feel as though the brain is absorbing it up. As it's slowly becoming less intense and is stemming from the back of the brain. Where as b4 it felt like the actual body was controlling it all. Strange! I know everyone is different but thought I would still ask 😊

[Kirk5w7 in reply to Cornishwaves247]

Hi again ive just wiped my reply once, lets hope this gets to you.

I endured at least 18 month of that even going to the GP to ask if id contracted Parkinsons. But i hardly get them at all now because i manage my fatigue much better. I realise my limitations and stick within them as much as possible now.

Janet x

[malalatete]

For balance try hydrotherapy. You may not be able to get a referral as the services are so stretched these days, but you can do balancing exercises in your local swimming pool. It has the advantage of supporting you so that you don't injure yourself further if you fall.

Also a good yoga teacher will be able to show you exercises for the muscles of your eyes as well as simple balance poses. I did a lot of yoga when my balance was poor and found it really helpful as you can tell week by week that you are inproving because of the repetition of the poses. Lots of yoga courses have one for those with medical impairments too - I did a sitting yoga class 2 years ago at our local MS therapy centre (I don't have MS but was welcome anyway).

[Kirk5w7 in reply to malalatete]

Hi Tai Chi is good too i attended these for well over a year, i cant invert or bend my head downwards so find some yoga poses hard to do, i would have to sot those out.

J

[Cornishwaves247 in reply to malalatete]

I have been to the hydra pool and I do like it. I can’t do yoga at the moment as I struggle with walking too much, once I get past this hurdle I think I will join

[Mufc]

I had my accident in 1998 and am still improving. I cannot walk as my balance is not good even after requalr physiotherapist since the accident, which I still receive. I have improved but not enough from me.

So sorry you have a very long journey ahead of you. Sorry I cannot be more positive but we may have different tbi so who really knows

Good luck

Mufc

[Cornishwaves247 in reply to Mufc]

Thank you for your reply. You have gone a long time with out walking, I hope I don’t have to be faced with the same challenge as you have had. Sorry to hear yours come about having an accident. Mine is an avm. I’m really hoping I can make a good recovery. But we will see, have to believe in it I guess. Time will tell 😊

[Mufc in reply to Cornishwaves247]

Be positive you will make a good recovery. You just have to believe in yourself and your abilities. Prove people wrong!!

Mufc

[randomphantoms]

Push for a referral to neuro opthamology and neuro physiotherapy.

My neuro physiotherapy only started almost a year and worked wonders for my balance (as long as I remember to pace things). Yes it took nearly a year doing the exercises four or five times a day and I still have to do them once a day but it was worth it.

[Mufc]

My Physio is Patty Shelley who I think is brilliant. Who is yours ? Patty is a neuro physiotherapist. I had a number of other physiotherapists who were no good to me. Yes I use to have Patty everyday at the beginning but we have reduced it over the years. I now go for a week 3 times a year . I also have Physio facials to help my speech.

Mufc