Is it a stupid question to ask if there is any chance of regaining any sight. Even a teeny weeny bit? My mum was diagnosed too late despite lots of visits to GP with scalp tenderness and headaches in October. Over 2 days at the end of November she has total blindness. It’s hit us very hard as a family ( my sister and I- Dad passed away 5 years ago) Mum has had a few down days recently since not sleeping well (circadian rhumb disorder) we have good friends and neighbours who visit she’s only 73
Any recommendations of audio books providers. She likes using Alexa so we have the 3 free a month at the mo. Are there any other free ones anyone uses on Alexa ?
Thank you
Dawn
Written by
Daughters2
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Not a silly question at all - quite natural. But as someone who lost sight in one eye some 8 years have to say any improvement is virtually nil.
Large amounts of Pred MAY help within the first few days to save second eye if it has just affected one (as in my case) but when it affects both at same time and so quickly - that’s it!
I guess you’ve been in touch with RNIB and local services to help your mum.
If your mum belongs to local library she can get free audiobooks- directly downloaded to her iPhone/iPad through an App. (Up to 5 at a time) . If you’re not sure, either look on your local council website or call into nearest library.
Also look at charity site and see if there are any local meetings that she might like to attend in future -
Please give your mum my best wishes, good luck to you all and please come back with any more questions.
We have had a couple more people on here recently in the same situation as your mum- I’ll look them up and add their details. They might have more up to date info.
Thank you so much x yep both eyes for mum. She was still working 2 days in a jewellers she’s worked for years. They are all devastated losing her. So glad I found this. Thanks for your help so far x
I did just reply but realised dorsetlady had responded already with her experience of gca. Feel free to ask any queations you have as there is always someone about to help and send my wishes to your mum.YBB
I am constantly amazed that this is still happening with such regularity and not just in UK. Perhaps we have to start shouting louder, but I'm not sure how.
The recommendation for fast-tracking is there - it requires education of the GPs though. And a financially viable form of access to the local rheumatology department. In the Bristol model they kept spaces for a TAB to be done within a few days - but in other places it simply wasted too many slots. A rheumy or technologist in every department who could do the ultrasound would be great - but the training for that is not pence either. If you go to hospital with a suspected stroke - and that is actually all GCA is when you get to visual loss - you wouldn't usually be ignored in the same way but even so, patients are often waiting long beyond the 4 hour window for clot-busting drugs.
It is better than it was 12 years ago before PMRGCAuk and I know the forums have potentially saved the sight of quite a few people because we have sent them to the ED when their GP ignored them or at weekends.
I know the charity is doing a good job and things are improving. My dad's dr didn't know about PMR, but the same practice has just picked up GCA in my brother and treated him as an emergency.
When communication is as good as it is today a "specalist" should know these things. These are peoples lives they are playing with.
You and the other knowledgable ones on here are doing a brilliant job , we are the lucky ones.
What with outstanding information on the internet which is a great difference from the good old days there is no reason to have a goid set of guidelines that doctors automatically look up rather than trying them to remember if not sure. I suppose they are having to take fifteen minutes to sign on to a computer!
It is so saddening but if the sight has gone quickly and for a number of days it is likely to have gone for good .
I'm so sorry for you Mum , and you , but I bet she appreciates all you do for her and your support will make a huge difference to her feelings and quality of life .
You are definitely doing you bit to help her increase her enjoyment if life and that is a really important thing to do.
DL has given you some great advice . I know that there are a lot of free Audio book and radio play services out there that can play via Alexa but I don't know them specifically.
The RNIB will have lists , or you could join Sight groups on HU and Facebook and ask the question to their members as well and they will tell you about all the free services they use via Alexa or a Smart TV.
There are Reading Companions as part of a Voluntary Group that work in my Area , whom give some company to the Person but also an hour or two break to their Carers.
It might be worth asking the local Sight Groups in your Area about that and any other Social things that you could get involved in.
When you Mum progresses and fancies exercise there may also be some Occupational Physio or Exercise Classes specifically for the Sight Impaired in your area too . These classes aren't just for attending weekly, but can also help Carers of Sight Impaired Persons with Disability or Mobility issues learn how to help their relatives move and maintain their muscles at Home.
You should be able to find out more about this via your Sight Specialist , Occupational Therapy or again Local Sight Groups.
Good luck and keep letting us know how your Mum , and you , are getting on.
What a lovely photo of you all. So very sorry to hear about your mum, she's so lucky to have 2 great daughters to look after her. I too will be 73 this year and only have the sight in my right eye, nothing to do with GCA though, but the thought of getting it is really frightening. I know our NHS (not sure if you're in England or not) do a great job, but working really fast when anyone is presenting symptoms of GCA is imperative. I often wonder 'how fast' they actually do work. Our A&E dept is bursting at the seams. Thank goodness my daughter is great too and hopefully she'd shout my corner if need be with something as serious as sight loss. Maybe, everyone suffering PMR should keep very high doses of Prednisone by them to take if need be until they can been seen at a hospital. When I ask my GP for this at my last visit, as I'll be on holiday abroad in June, he said it wouldn't be necessary....how do they know this,it's not their eyesight !! So if I want to protect myself from potential GCA I guess I'll have to pay for them myself.
My very best wishes to you girls and your dear mum. Give her lots of love as
she must feel absolutely devastated, and who wouldn't.
Never any silly questions - because you are asking because you don't know - only silly answers.
I'm afraid not - once vision is gone, even with very high doses of pred within hours of the first symptoms, there is no real chance of a return of sight. Prof Mackie in Leeds says there have been patients claiming they have some return in terms of telling dark from light but any objective measurements show it is probably wishful thinking. It is like a major stroke - lack of oxygen leads to massive damage of the optic nerve and nerves rarely recover function.
We have led a charmed life here until very recently - but in the last few months you are the third case of total loss of vision to find us. We are in the know - there are a few symptoms that people mention that really send shivers down our spines with scalp tenderness and headache being high on the list - but many GPs seem totally oblivious.
RNIB is your first port of call if you haven't been there yet to help you find your way through the maze of what help may be available. Occupational Therapy at the hospital can probably help with adaptations for your mum. Please wish her well from me as well.
I am very pleased to say there is soon to be an educational programme for GPs in the north which may be able to be rolled out nationwide. Prof Dasgupta at Southend has done a lot of work towards developing a fast-track referral set-up for GCA and that requires that GPs are educated. It can't come too soon. Prof D got into GCA after meeting a patient like your mum who he felt had been failed with her symptoms being ignored for weeks until it was too late. But although the fast-track would save much heartache and money it hasn't happened yet because of lack of funding, Nothing new there then.
Thank you very much for taking the time to reply and your good wishes. I thought no hope but do many friends and family say surely something can be done. The hospital were amazing once doc decided to send her. By which time sight almost gone. I’m still in denial with it All our lives have changed for good in a massive way. We have had great support I have to say when she came out of hospital ( Leeds chancellor wing) there’s a specialist there who mum is going to be a part of research since she wants to help others The Leeds hearing and sight loss charity have been an amazing help too. X
Shame you didn't bypass the doctor and go straight to the hospital. That was the advice I was given should it happen to me. However, you wouldn't have known.
Many people believe there is bound to be SOMETHING - especially when they hear about stem cells being used or the like. Unfortunately - different situations.
Do contact Yellowbluebell though. Medical negligence ruins lives and that GP needs dragging into the 21st century and taught to keep up. The heartbreaking thing is you were at a superb unit for GCA but even they can't perform miracles.
As someone has said - had you been here you would have been told to get to A&E and bypass any GP who drags their feet. All PMR patients should be told that - but not everyone has the PMR warning.
This really shouldn't be happening still and as pmrpro has stated this is unfortunately the third case in just a few months. When you are feeling ready i would advise you take action against your mums gp. This doesnt bring her sight back but might just stop one other person being ignored and going blind. If you need any help please feel free to pm me. YBB
Definitely. Even if it just provides some answers and stops another person suffering the same thing. Make a diary of events whilst things are fresh in your minds i.e the appointments with gp before diagnosis and any hospital visits, diagnosis dates, drug doses etc. Hugs for you all. YBB
My daughter sued the hospital after I lost the sight in my left eye due to neglect. I contracted bacterial meningitis at the age of 47. We won !! Would sooner have the sight in both eyes though.
I am so sorry that your mother has suffered this, as you may have gathered above I am also very angry that this is still happening.
Your mother is fortunate that she has you and that you have arrived here. There are masses of people here with experience to help you. All best wishes to you all.
So sorry your mum is dealing with a massive new normal. With alexa I listen to plays on radio 4 and 4extra across the week and podcasts of my favourite shows. Of course amazon do audio books it may be that once a month you go through the choices using Alexa app to access. Your mum may be able to. Follow TV programmes with audio descriptions. This can take a while to get used to. Good luck and keep Us in touch. Voice to text software is very good these days.
Three beautiful ladies! I'm so sorry to hear about your mum and how she has been let down by the NHS. It's understandable that she has days when she feels down.
Excellent suggestions have already been made here for audio books, alexa, etc. Is your mum comfortable using computers? If so, there are apps for things like dictating emails and for audio interpretation of websites. Does she like animals? Would a companion pet be helpful? (It's perhaps early days for a guide dog.)
At one time I considered becoming a volunteer with our version of the RNIB (CNIB). And would have done so had I not had as my first person a woman who evidently expected me to do things like washing up and shopping. I'd signed up to read to the visually disabled, and be a sort of over a nice cup of tea and a cookie companion. Being ill with as yet undiagnosed PMR I wasn't up to pursuing the matter further. I did do the training, and it is remarkable what this organisation can do, the wonderful support they offer both to the person who has lost all or part of their sight, and to their family. If your mother isn't ready you and other family members can still benefit from contacting the RNIB.
I'm so happy that you two wonderful daughters found this forum....remember NO question is a silly question and the folks here are 'all about' helping your family. Your Mom is blessed to have you.
I lost the sight of one eye through a misdiagnosis and can simply extend my compassion. I could see how this impacted my family which is quite a distance away. It is as important to support you gals as it is for you to support your Mom. Let these wonderful people help.
I'm sort of a newbie and Dorset Lady is a treasure trove of experience as well as usefull information.💗💗 My prayers~
Me too Grammy. I lost the sight in my left eye due to neglect from the NHS. Most of the time though they're brilliant. Just over-worked, under paid and too many patients to look after. Long gone are the days when we were children and our Family Doctor was a family doctor. Knew everyone by their first names and called to our homes when we needed him.
First my 'classic' symptoms were misdiagnosed and to add insult to injury when I woke on August 5 and realized the sight was gone in my left eye and was transported to the hospital I was given the wrong dosage of prednisone. I was examined by a vascular surgeon's physician's assistant to set up the biopsy and an opthalmologist who ordered 1000mg IV of Prednisone for three consecutive days. For the first two days I was only given 100mg....the opthalmologist told me....I was unaware.
I was alone, friends but no family around, had just lost partial vision, was frightened ....but wish I had pursued it ...in retrospect. I don't dwell on it but would encourage the Daughters2 to be able to provide whatever their Mom might need.
The lack of awareness of GCA in the medical profession here still shocks me. I'd never heard of it but I didn't go to medical school. Even the opthalmologist I go to is only treating 2 people with GCA right now and it is one of those huge practices.
I have nothing helpful to add, I just wanted to send sympathy & hugs to you all, it’s a very sad situation, especially as it could have been caught earlier, with a different outcome. Take care, hugs, S x
If only one could go straight to ophthalmology. The eye clinic where I work treats potential GCA in the same manor as a life threatening illness. Patients have blood taken immediately for ESR levels and kept in the department until the results are back. Patients are often transferred to a ward for high doses of IV pred and biopsy arranged asap. There is also a joint GCA/rheumatology clinic every 3-4 months where two consultant ophthalmologists and one consultant rheumatologist review patients together. I would urge anyone who fears that they have GCA to try and access ophthalmology first. The larger hospitals usually have walk in eye casualty. The smaller units generally have an ophthalmologist on call each day but take referrals from A&E, Gp’s or optometrists.
The on duty Ophthamologist diagnosed my GCA when I attended A&E within minutes of tests. Unfortunately I had by that already lost sight in one eye, but his prompt action and professionalism saved the other.
I shall always be eternally grateful to that young man.
Hi. Yes hospital were great. Doc should have done blood test at some point especially with her having tender scalp and it would have shown We are making a complaint since that particular doc obviously not aware.
I’m so sorry to hear about your mum. Your post is heartbreaking and it puts my grumbles about daily difficulty with PMR into context. I’m fortunate and thankful.
I can’t offer much by way of health help, but you mention Alexa and audiobooks. Alexa/Amazon/Audible are all one...so if your mum is familiar with Alexa, Audible will fit. You may want to look at an Audible annual (or 6 month) subscription. It’s the best value; 12 months buys 24 Audible credits ( far better value than monthly sub at 7.99 which o lay gives you one book a month). There are regular member only sales on Audible, buy one get one free, discounted audiobooks and more. The buy one get one free doubles the credit value and it’s the best possible vfm. I think the annual sub is £109 for the 24 credits, but it’s worth every penny because books are a lifeline and particularly for your mum. You can’t buy an annual gift sub, it has to come directly from the subscriber. Check Audible subscriptions on the Audible web page. I have over 700 Audible titles which have cost in my 5 year membership less than £550 in total,so it’s worked out well under £1 a book with all the freebies and offers.
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Could this be PMR?
Could this be PMR?
This is going to seem like a silly question.....
