We had an appointment today with V's neurologist except we didn't see him we saw his co -consultant along with a trainee who was there because she had never come across PSP - poor girl , what a lot to learn .They were both very nice and apart from the fact that V's neurologist had forgotten to put his notes in the file and believe you me it is some fat file - I can always tell where we are in the queue by where V's file has progressed to in the pile - it really all went well I suppose .Except what was the point of any of it ? They freely admitted there was nothing they could do to help the cognitive problems or the falls or the OCD. They had no answers to any thing- I didn't think they would .But they were very smiley and asked if I had enough help as they didn't want me to have burn out and I was very smiley and said we were doing ok and all the time I was thinking I would love carer help 24/7 plus an 18stone body builder who could lift V effortlessly up from all the falls especially when she gets into an awkward spot and also to deposit her and her wheelchair into and out of the car and whilst we were on it how about a chef - one from Master chef would do and maybe an entertainer thrown in since poor V can't read and can't concentrate on audio books long enough to get to grips with the characters or plots - but no we are doing OK .The highlight of the afternoon was when we were sitting in the waiting area there was a very large lady sitting with her back to us and she was wearing what I can only describe as a very tight flesh coloured top. I happened to mention to V whether in fact she was naked from the waist up and what would greet us if she turned round this produced such a shout of hilarity from my wife that all the elderly gentlemen waiting to go into audiology reached for their hearing aids convinced their hearing was on the mend .There's always something to enjoy isn't there ,you just sometimes have to seek it out .
Visit to the neurologist: We had an... - PSP Association
Visit to the neurologist
Bless you Georgepa, you always tell such a great story in a very entertaining way and so much of the content is appropriate to all of us I guess! Keep on doing what you're doing, your wife is very lucky! I am only 5ft nothing and I have also struggled with Keith's wheelchair in the car today, I actually dropped it on my big toe, you can imagine what colour the air was!
Love....Pat xx
OUCH or words to that effect.!
Thank you Georgepa for making us both laugh this morning! Every morning I read out to my husband any of the posts that I think he would find interesting or relevant to our situation and today we could both relate to what you say about visiting the neurologist. We also "look forward" to the next appointment and then wonder why we bothered as there is nothing useful he can do or say. We don't even seem to get any enquiry about how we are coping. When you get your 18 stone body builder do ask him if he would like any extra shifts - we could certainly use him too (and the entertainer)! Vicki
Great post Georgepa with which I totally agree. Our neurologist has actually said to me I should stop paying for appointments and taking C to see her and just do mobile phone reports to her instead. But we continue to go and see her every 2 - 3 months as she is lovely and C enjoys the trips. I am dreading the acquisition of a wheelchair so he is still tottering along with his walking stick and someone supporting him from other side - usually me. Meanwhile I have solved his boredom issues by finally managing to stream Radio 4 via iPAD. As I write he is listening to John Humphries demolishing a politician. Actually I would be useless in UK with carers coming and going. It is now 10.30am here and we are both still in dressing gowns and were woken at 9 by cleaner arriving. Rigid routine is not us. Yesterday was his 68th birthday and we went on a long drive through the mountains, ended up at our favourite bakery/cafe where they put a candle on a cup cake for him then home for lamb chops (I hate lamb but, of course, it is his favourite) and a large whiskey to wash down his sleep meds. What the hell say we, alcohol is forbidden but what difference does the odd one make? We plod on.
Just the odd one ? I hope not !!!! Keep plodding - its what we do best isn't it.
Don't stint yourself, Georgepa; why not someone to clean the windows, wash/polish the floors, do all the ironing and of course the heavy part of the gardening? You're worth it! As for the poor (but highly paid neurologists), they will never understand PSP and start to be helpful until they go out and observe it in the home. Roisin's - a 30-something Frenchman - at our first meeting and in front of Roisin asked me earnestly if I was aware of the likely progression of PSP and what I as my wife's carer would face. He hadn't a clue; at a subsequent consultation, when I reported that she was having difficulty swallowing, he glanced up from her notes and said "why?" When I answered with some feeling that Roisin suffered from PSP he followed up with "How does this difficulty swallowing manifest itself?" before ending the meeting by sending us to the nutritionist.
Years ago, many years ago, there was a UK radio show which included the female character, a "charlady" I think, whose catch phrase could be adopted by PSP sufferers and carers alike: "It's being so cheerful as keeps me going." except that she uttered it every week in the most mournful tone, which of course was the joke. Your starter for ten; what was the show and what was her name?
Best wishes for a good day today for you and Veronica.
Christopher
She was aptly named Mona Lott and the program was ITMA (It's That Man Again). Why can''t I remember what I did with my car keys ten minutes ago??
I'm not posting much but I read all the posts every day, you are a remarkable lot but from what I recall there aren't to many acceptable alternatives other than to care for your loved one the best you can.
Best wishes, Jerry.
Mona Lott that's just perfect - how could her parents have been so unkind - hope you found your keys - try the fridge !
It can happen by accident - it took a vicar to explain to a chap I worked with named Royds that perhaps Emma was not the most appropriate christian name for their daughter ! Remarkable really, since his wife was most particular and insisted her husband was christened Richard not 'Dick' - good thinking re keys, I may keep them in the fridge from now on, fridges are easier to find!
Regards, Jerry
Was it Mrs Madge in Mrs Dale's Diary ? Gosh that dates me .
Good morning all you lovely people out there!
I have had a laugh and a smile this beautiful sunny morning, reading all your replies to Georgepa and at the moment as I write this, I feel a warm glow from all of you which was much needed.....I have a picture of you all in my mind....keep up the good work.........love to you all and have a great day wherever you are.
DenB x
great post georgepa - its what we have all come to expect !!
Sister just diagnosed with CBD
Julie
