Progress

[Nackapan]

Thought send out a positive post to give others hope.

I can now watch t.v with relative comfort now after 31/2 years !!

With a smsll lamp on behind me ad still light sensitive.

These lighter evenings whatever the weather cheer me.

I've trued on and off black snd white . Listening only. Ect.

Coloured specs prescribed to help. ( exoensive)

Tinnitus does go up a notch depending on programme and activity.

So many actors abd their characters aged lol.

Bit 'mind blowing ' at present.

Started to really improve in January

Tend to record so can stop

things at my pace and stop.

As have had a nasty flu virus recently abd still managed some TV. Thought that wouldn't be possible.

Really a good distraction at times as get very restless. And frustrated at not bring able to do other things.

[Sleepybunny]

Great to read a positive story.

Here's hoping you have even more improvement over next few years.

[Nackapan in reply to Sleepybunny]

Thank you

[Hidden]

Keep going nackapan, improvements even though are small are all good signs of recovery.

[Nackapan in reply to Hidden]

Yes they all add up ..helping to get on with life .Hope it's happening in your household

[Hidden in reply to Nackapan]

Actually I feel quite well,getting back to more normal, just the other half. He has definitely benefited from b12 Injections I have given him (mentally), he wasn't depressed or anything like that just inpatient and not his normal self. He very rarely nods of now. Hopefully once we get his back sorted and more mobile he will be fine.

I do hope you find the light at the end of that tunnel,

It's so frustrating wanting to do this, that and everything and the body refusing to co operate.

[Hidden]

Great news Nackapan I’m so pleased for you it’s time you had a good positive result keep plodding xx

[Nackapan in reply to Hidden]

Keep plodding.....definitely. Take care

[deniseinmilden]

Brilliant news!

Thank you! 👍 X

[Nackapan in reply to deniseinmilden]

Yes a strange one stilm with 'pattern glare' Still has to be a 'dress code' as can't tolerate fine stripes ect.

Used to wear so many loud 'busy' clothes.

All gone.

Never had an explanation about TV. No reason why changed.

Must be b12 eventually making connections 🤞

[deniseinmilden in reply to Nackapan]

It's really odd isn't it. You are the only person I have heard of with this specifically, and so bad with it too, but I have heard lots of us report some visual difficulties. My vision was really blurry for months, if not a year - I don't really know because I had so little memory in or out at that point, that I almost totally "lost" about 18 months of which I can only partially recall odd incidents.

I've been under pressure to do lots lately, following a spell of being badly unwell for months and my house is in chaos. I've got to self isolate from now until Wednesday morning ahead of a small heart procedure and I'm looking forward to some time for myself to get things a bit less mad as I just can't cope with the sensory overload of things being untidy everywhere. And that's even now, with years of recovery under my belt.

It took about 3 years before I could start to talk fluently again but now I don't have any problem unless I'm tired or have a set back. My vocabulary is possibly more extensive now than it was before the deficiency crippled me and reduced me to not much more than "ug!" and "hi, how are you?" And I can now talk without pulling mad faces, which I had taken to doing! In May I'm going to do a couple of half hour talks on farms about cattle handling systems and it's only just occurred to me that I hadn't even considered my ability to talk or remember - how good is that???!!!

I don't cycle per se but do use a bike to get about locally. It took a couple of years before I could ride it with any confidence and had to use both hands on the handle bars all the time where I had lost my balance mechanism. Even now, especially if I haven't been out on it for a few weeks, I still notice improvements in my balance and reactions - and obviously if I haven't been out its not due to practice! I can ride round trickier corners and up and down more undulations without having to touch the handlebars at all! (I'm nearly 50 going on 15!!! 😜😂).

It's amazing how much progress is available to be made and people really shouldn't be too disheartened if it doesn't happen quickly - keep going and it's good how much better it's possible to get!

May your improvements continue for ever! 😘

[Hidden in reply to deniseinmilden]

Good to be able to encourage people not too give up !

Will be thinking of you on Wednesday! Good luck

[deniseinmilden in reply to Hidden]

You are such a darling - and with all that you've got going on! Thank you so much.

I'll be fine - having got nowhere for a year with one of the worst cardiologists possible, I'm now lucky enough to have one of the best possible!

Like you say, it's all in the specialist, isn't it!

Good luck with your things too! X

[Ghound in reply to deniseinmilden]

Good luck for Wednesday, hope you feel better soon xx

[deniseinmilden in reply to Ghound]

Thank you! X

[Nackapan in reply to deniseinmilden]

Thank you.i have visions now of you racing g about on your bike doing tricky corners. A wheelie even lol

I've only ever used my bike for transport . Not s hobby as such.

As brought up without a car.

My balance when I did try and cycle waz good.

I know doesn't make sense with the rest of my symptoms .

It was 'head' symptoms that stopped me progressing . Tight skull and weakness .

Really paid for it later.

I used to cycle miles for years

Prior to getting ill locally to 'town'

That's when I realised I wasn't right ax it it felt like a rope pulling me Back like a strong wind.

I think all going well i will try snd cycle agsin this summer.

Actually always found cycling easier than walking.

Hope you get on okay on Wednesday.

Keep going.

You are an inspiration with all you deal with.

Take care 🙂

[deniseinmilden in reply to Nackapan]

Thank you darling girl! That's really something, coming from someone like you! xx

[Rexz]

Nackapan, That is wonderful news with more to come I am sure. This is just the start so just keep moving forward as I was advised early on to take one day at a time. There is hope so just keep positive and don't forget to laugh once in awhile.

God bless, Rex

[Nackapan in reply to Rexz]

Yrs I wax told No quick fix

How true.

Thanks

Hood you get to laugh too.

[Narwhal10]

Slowly but surely does it Nackapan. Great to hear.

Sending my best

[Nackapan in reply to Narwhal10]

Thanks.

[Ghound]

That's great news ! You are always such a help to everyone here, so I'm delighted that you've felt this improvement 👍 Best wishes for continuing recovery Xx

[Nackapan in reply to Ghound]

And to yours ! Thanks 😊

[deniseinmilden in reply to Ghound]

Isn't she just - against the odds too!Superb.

[Cherylclaire Forum Support]

Happy news.You have worked really hard to get this far, and it's finally starting to pay off for you. If one thing can start to improve, so can others.

Hard work to keep on with a course of action that appears for a long time not particularly effective, especially without support from medical professionals. Makes you doubt yourself at times- but without anything else ruled in, what alternative options remain ?

Another example of improvement, long after predicted expiry date, demonstrating how poorly understood this condition is.

Onwards and upwards, Nackapan !

[Nackapan in reply to Cherylclaire]

Yes.....thanks 🙂🙃

[deniseinmilden in reply to Cherylclaire]

Perfectly put! Thank you! x