Just Another PSP Day!

[Jan_K]

Thanks for all the messages friends!

Yesterday I told you Mum had sore eyes and we were off to the doctors...Well. Mums own GP was on leave so had to see another one and I had to go through all the details of PSP again. I was worried that she may have got an ulcer on her cornea as this can happen with PSP with people with eyes that continually run. Course this doctor could get no where as as the doctor trys to look in her eye Mum can;t open them!

My eldest son is in the forces and he is over this week with my only Grandson (7) They stop at the In-laws so when they are here I don't really see them much...However, I was to have my Grandson for the day today..but guess what...I have to take Mum to the Eye Casualty to let the experts look at her and it could take hours!

So..another day with PSP changes your plans as day to day we don't know what it is going to bring us. Our priorities are with our sufferer whatever the cost.

Hopefully I will have the chance to see my Grandson and have him all to myself for a couple of hours before they go back to Germany next week.

Will let you know how we get on.

Oh and by the way the middle son (23)left home yesterday and the reason why I said I will cry...not is because he keeps coming back!! xxxx

[SuzieQ]

As you say, Jan....Just another PSP day. I'm sure we all agree with this. In a flash your whole day can be turned upside down. But as carers we do what is required of us and just get on with it. It can be very frustrating , but we get on and do what is necessary because we care so much.

Make sure you get to spend some quality time with your grandson while he is over here. It will give you a much needed distraction for a short while.

Take care.............SuzieQ xxx

[Fiona_McL]

There's always a new challenge with PSP, and it can be soooo frustrating! Nothing is ever easy or straightforward to arrange.

I hope you get some time with the wee man- I'm sure your mum would love to see him too. Good luck today

Fiona x

[maggieh]

Hello Jan,

Forgive me for butting in, but saw your message today about your mum's sore eyes. Has your mum tried any of the range 'artificial tears', eye drops. As you will probably know eye problems like this are common. The outer edges of the eyes water but the centre remains dry - hence the soreness. Being unable to blink or open the eyes to see also makes matters worse. There are one or two brands of eye drops and they are very good. The drops form a sort of skin over the eyes and are vry soothing. You can buy them over the counter in any pharmacy in the UK, without a prescription.

After my husband had had PSP for about 5 years I began to give up on doctors and even neurologists, as very few knew much about this illness.The more I read the more I learned and so became a bit of an expert; compared to them. I was guided too by advice from others 'ahead of us' along the road with PSP - plus the PSP Association's, Specialist Nurse for our area. My husband's GP and the staff at his care home were always then happy to go along with whatever medication had been suggested (via the PSP Nurse) but if they wanted clarification they would ring her direct and speak to her themselves.

By the way, it's amazing how you learn to 'reel off' the symptoms of PSP - just like learning a script. It used to take me about 3 minutes, that's all. I wish I could have had £20 for everytime I have asked a medical professional "Do you know what PSP is?" and the answer has been "No!"

Hope the above has helped.

Love

Maggie

[jillannf6 in reply to maggieh]

hi maggie

glad to c u on the site

how r u?

Richard and you were so good in getting info and using it to his advantage.

I know exactly what you mean about the medical people and i want 2 raise the problem re my eyes with the psp nurse today and with the consultant who i see again next week

thanks for the info on artificial tears and dry eyes

love jill

[Jan_K]

Hi Maggie, many thanks for your rep;y. I spent 5 hours today with Mum at the eye casualty. I spoke to Cat one of the specialist nurses a few weeks ago and she told me the same just as you have and warned me of ulcers on the cornea, so she suggested I asked mums GP about viscodrops which she has been using for the last two weeks.

Yet again today and through the trio nurse, to nurse practioner I kept explaining about PSP and they took not the slightest bit of notice. Mums head/chin was put in the eye machine thing and kept being asked to look up and down which of course she couldn't and neither could she open her eyes for them when they asked. I could see eventually the frustration in their faces but I just wanted to yell 'I keep telling you , but you won't listen...she can't because she has PSP!'

Anyway consultant came in and asked why the GP had sent her and I told him I was concerned she may have ulcerations in her eye. Guess what..she has!

If it hadn't been for our PSP Nurse Specialist it could have been ignored! Poor Mum

Am going to ring Katie my area nurse tomorrow as don't know whether I can use the viscotears as well as the anti biotic she was given. We have to go back to the hos Fri morning so know I will be going through the same thing again..explaining but I will go with the advice given from Katie and tell them.

Thanks Maggie so much for your help xx

[jillannf6]

hi Jan

yes it is so frustrating when the medical people do not know about psp

i have seen a (different) opthamologis twice since diagnosis as the not blinking and dry eyes mean i cannto wear my contact lenses

and the pressure in my eyes is high

- I am so short sighted that i could not see the appropriate lights when asked to do the "fields of vision" test- they made me do iti without my specs on and i could nto see it at all!!!

The optometrist agreed tha it twoull not be possiible to do it without my specs -

he is seeing if i can use an inserter for my contacts as i see so much better than with my variafocal specs

(and have never worn my specs outside since age 19 until now!)

i tried to explain abou tthe psp and they did not seem interested - c u in 6 months

i have some drops prescribed but the eyes do not really feel at all good

sorry i cannot be more positivei

love jill