So much has happened not least because I have lost my sight and some REmber I had AMD for many years without too much trouble. Now i struggle to type and apologise for any mistakes. I have tapered to 3.5 mgs of pred and will stay there while i recover from a recent ablation on my back problem and also MORTONS NEUROM i HAD A SEIZURE TWO WEEKSA GO. sTILL UN DIAGNOSED. tOO TIRED TO GO ON NOW BUT STILL FIGHTING.
Did you all think I had deserted you?: So much has... - PMRGCAuk
Did you all think I had deserted you?
Written by
merril
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32 Replies
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Keep fighting and hope you are okay
I have read your profile and post and realise what a dreadful time you are going through, and yet there is a hint of a tough cookie in there that is peeping through. I hope you have family and friends around you to help you through this difficult stage . They say god only gives us what he thinks we can handle but I think he is being a bit naughty. Please stay strong and look after yourself. Thinking of you.
You have been having a tough time. Thank you for checking in here. I think you;ve done really well with that pred taper. Take care - get your rest while you recover from latest difficulties. ❤️
What a challenging time you're having. I hope you can find some respite from the difficulties and I send you much love. Xxxxxx
WELCOME BACK MERRIL. SO SORRY YOU HAVE LOST
YOUR SIGHT.
YOU ARE A TRULY TOUGH LADY. HUGS 💐💐🍀🍀
IF WE CAN HELP IN ANY WAY PLEASE LET US KNOW.
CONSTANCE
Good for you Merril, never give up 💪, you sound so positive in the midst of all of this. Sending love xx
PMRproAmbassador
Sorry to hear that - what can WE do to help with posts?
Can get programs to help with poor sight, and iPad/iPhone have dictation facility etc built in....
I know - but there are factors for us to consider too aren't there?
Yes I'm sure there are....
I remember someone asking for people to type in capitals - not sure if that really helps. After all, the recipient can increase thesize of type in their view by zooming. I know the colours make a big difference - the NE charity went to RNIB to get advice. But Patient and HU just seem to choose what they think looks nice (which is a personal opinion anyway).
Personally I find capitals don't really help..as I've said many times in my situation it’s the colour combinations that help the definition I lack...every time!
DorsetLadyPMRGCAuk volunteer
Hi merril,
sure you are aware, but there are programmes to assist you and your low vision - these are just examples -
Text to Speech Software
When you get tired of trying to read your computer screen and find that even with more magnification your eyes are strained, switch to a text to speech software. This type of software can read to you the weather, your e-mails, the news, or documents. Many computers now have an accessibility setting that provides a text to speech feature for free. You may want to try it first to see how it works for you, however the speech quality is not as good as purchased software. There are several software programs to choose from – they include JAWS, Super Nova, and Dragon Naturally.
Speech to Text Software
Perhaps your low vision is making it difficult to type and to navigate the computer. With a speech to text software you can “write” emails or papers by talking or give the computer voice commands to search the web. Whether you want to look for a new recipe, get the latest news, or research a topic, speech to text software such as Dragon NaturallySpeaking can do it for you.
Large Number Keyboards
Did you know that there are special keyboards for those with low vision? These keyboards use larger letters/numbers with better contrast for better visibility. The color combinations available include white letters on black keys, black letters on white keys, or yellow characters on black.
Grammy80 has recently purchased a larger screen so perhaps she'll be along with further advice
This is a UK website which might be useful - and I'm sure you've contacted RNIB
abilitynet.org.uk/factsheet...
This would be a good one to draw to the attention of the poster who wanted to discuss speaking technology for her father the other day. Maybe an addition to FAQs, given that visual impairment is the big fear in GCA?
Thinking of you Merril. Hang in there. xx
A difficult time for you Merril. Think your approach to these problems is amazing. Keep in touch and let us know how you’re getting on! Xx💐
I’m so sorry that you have lost more of your sight. Is this from the AMD or from GCA? They are very different in terms of the impact on your vision. As you will probably know, AMD, will rob you of your central sight but leave your peripheral vision in tact. GCA on the other hand will severely reduce sight of both central and peripheral vision. I sincerely hope you have been referred to your local Low Vision Clinic and Eye Clinic Liaison Officer (ECLO). These are good sources of information and assistance. Life sound very tough for you at the moment and it’s not surprising that you’re feeling tired. Take care x
Dear dear merril, first I'd like to give you a hug~!! It seems we are walking in eachother's shadow. I had an ablation for stenosis on May 6 and see a great improvement. Now I can stand for longer periods and today I took a walk outside with my rollater..need my buddy, and that is OK!
In 2019 I lost the sight in my left eye and now have blind spots in my right. Right now you have so much to deal with...get rested, things are easier to sort out then. My ophthalmologist sent me to a neuro-ophthalmologist who has really helped my vision. I had lost some peripheral vision, right eye...got it back.
As DL mentioned....recently I got a LARGE monitor and oh! that has helped me keep in touch.
I have the option of speech to text...but I make it plenty large enough to see.
Merril, I have epilepsy and haven't had a seizure now for over 40 years....I'm sorry that a seizure was thrown in on top of everything else. It doesn't mean it will happen again or that medicine (I KNOW, meds!) won't control it.
I'm not a doctor, for sure, but that doesn't sound like much prednisone that you are taking. There may be a reason I'm not aware of but I wouldn't keep tapering. That is just me.
Don't stop fighting and I don't believe you will. It is only my spirit and hope that keeps me going and smiling, even though I feel like garbage sometimes. You sound like one spunky...American for tough and spirited....lady! You'll handle this...let all of us help!💕💕
I'm 'across the pond'....or I'd have been here sooner...love to you💕
Grammy have lost all i had typed!!!
Later!!!
Oh!!! I know that feeling....I finally figured out what button I was bumping but still manage to hit it occasionally! One thing at a time...😵💫😵💫💕
Grammy i can identify with that shadow but dont think i have epilepsy will see in time. have a pacemaker implanted for a tachy/brady syndrome I am still grieving after the death of my childrens father who died of Covid two months ago and I have agreed to talk to someone from a listening service. Tired now so off to bed. Bless you Grammy
I pray that talking with someone really helps, you made a wise decision. My heart goes out to you~!💕Rest....
Grammy, thank you for all your helpful and comforting words and now the good news. managed to turn off the in built mouse that I brushed when using the space bar,my typing is better I think. The not so good news is that the ablation has not made any difference to back pain but my neuroma is healing, so my foot is easier for walking. i had my visit to second hospital today and now have several aids, eg special optics for watching TV, and a mag glass for round my neck leaving both hands free to crochet.next visit to hosp end of June and horrors they will be looking for GCA. Much too late DL might agree! me too! so tired now but will keep in touch. My thanks to all who replied to me before. DL, I increased my pred a little to give me some respite
So glad to hear from you and so glad to hear all that fight and determination. I'm sorry to hear the ablation did not give you much help even though your foot is healing. When did you have the ablation?
It took about three weeks for my back to be fairly comfortable but I still have to watch how long I stand, but before it was 3-4 minutes and I was rushing to sit to stop the pain. Is it any better.
Be ever so good to yourself, rest, crochet (brilliant) and watch TV...do you get Judge Judy over there? She'll keep your BP up or maybe you shouldn't watch her if you could!!!
I hope things are getting better around the house for you...you've so much to deal with in such a short span of time. I'm thrilled to hear from you💕💕
It can help to write replies in Word (or whatever you use) and copy and paste it. HU has some very annoying habits - one is losing all you wrote if you accidently leave the page.
Thanks for that info. Going to cut out commas, capitals and be as succint as poss
Well done merril 💐 You sound like one determined lady. Hope you are able to use some of the tips offered here.
Do let us know how you’re getting on.
We’re all here for you. Hugs to you xx
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Just when you think its all over 😂
Hooray whoop whoop.
But now for the sting in the tail I get down to 1mg of pred all was good then...
What do you think? Anyone had any strong side effects?
were reported by staff who had to stop work to recover, according to ANSM, the national medicines...
How many MG starting Prednisone do you think I should have been started on?
mg , the pred reduced pain and stiffness about 50% and for some reason he started tapering down...
Time to reduce... I think?
feeling right now at the moment of feeling mostly pain free (shoulder and neck pain still there...
Fatigue which I did not have before 
Need to check in with you all
Still here not forgotten you all
I am new here. How long did you stay on 10 mg of prednisone?
I think it was a GCA Flare
