I thought I would start this thread I hope you don't mind,,
What is the worst advise you feel you have had.? I will start
Being advised to go and buy exercise sandals,When I stated I was 64 yrs old in danger of falls, had PD,which affected my right side,The answer was I wasn't old.
Angel 4 U,
I should have thought at your age ,you are more than capable at making up your own mind as to what,and what isnor suitable for yourself . So ,I Agree. With you that is stupid advice. LoveBa X
1) from the ultrasound man 'well the neck measurement shows that at least down's syndrome isn't something you have to worry about.'
2) standing in mall with downs syndrome boy with unusually normal neck, one is accosted by this advice - 'don't worry - they don't live long.'
turnip-- sometimes I worry about the human race.
I had very bad dental pain, truly the worst pain of my life, worse than childbirth, worse than disc problems and at 2am I phoned NHS helpline to ask if there was any emergency treatment at a dental hospital. I was in London. Told her I had taken more pain killers than I should have done in last 24 hours and didn't dare take any more. I was on my own and ready to jump under a train. She said ahe'd find out and get back to me. A differeent voice phoned back....
1. give yourself a big hug from me
2. have a nice HOT cup of tea
3. take a couple of paracetamol and go back to bed
4. see your dentist in the morning
Mosie - hot tea ! how ridiculous - lemon sorbet and nuts is the thing!!
I can't believe anyone would say that about your child!!!! Why on earth would you think that way about any child?.Shocking. I hope you had a suitable retort.
My husband is very good at giving advice " If you got more exercise, you would be able to walk further" he told me. Git.talk about pots and kettles!. Bearing in mind I am 8 1/2 stone and 5'2", work full time and look after my two little grandchildren 3 times a week after work.
He was a 19 stone and 5'10" couch potato who constantly moaned about his bad knee, stomach, headache, blood pressure etc etc
He went for his BUPA medical to be told uncompromisingly " all your ailments are self inflicted, lose weight and they will sort themselves out". Well he lost a stone and a half (not through exercise but a carb free diet) He no longer takes the blood pressure tablets and his knee was miraculously better.
Came off the diet, put some of the weight back on and surprise, surprise, he has a bad knee!!! He is currently trying (and failing) to convince me it has nothing to do with his weight!! MEN
my suitable retort was to laugh - it was so ridiculous and unexpected.
Sorry that should read advice
Turnip. How did you keep your hands off them.? I would have punched them on the nose
Here I sit with toothache since Friday. (The longest bank holiday Easter of my life). I'm popping co-codomol like smarties.
So no chocolate for me. I can't even say which tooth. It's all of em. I suspect it's the one where the filling fell out, but why the rest?
Turnip, will raspberry ripple and a flake do? if the lemon is important I've got cup cakes with lemon icing.
It's now that I'm reminded of my advice to increase my energy level. "Tired? Tried Lucozade?"
Wow I know there are some bobbies baw stars in the world. And according to the t&c's I am unable to respond properly. You are an intelligent man I'm sure you'll know the medical term for moronic imbeciles like them. But that's another topic altogether.
OH Eck! I am so sorry you are in so much pain.....if it were possible I would come and kiss your toothache away, cos Angels can do stuff like that
y'know! lots of luv BA x
OK. I'll leave the kitchen window open.
OK I've assumed position.
Be gentle with me.
My bottom tooth is super sensitive to cold and I've not got any nuts. I've got a bounty. Turnip, will this work? Cos ba's not turned up. If it wasn't Si cold I'd hAve been arrested.
Dear Eck I hope you ate feeling a lot better i must go to spec savers ,I read "I'm popping co condoms like smarties" I thought that strange,till I read it again oops
pop and get some Colgate pro-relief toothpaste and rub it where it hurts, fantastic stuff!!!
eck, sorry to here of your lack of nuts. they might have helped take your mind of the excrutiating pain.
i remember the last time i had a rotten tooth and the dentist pulled it out. it felt so good in a perverse sort of way - getting rid if something awful was such a relief.
folk remedies (so called because if the sound you exclaim when you try them) warm saline solution. gargle with dispirin. go t the out of hours dentist.
I was in Hospital with a Maximum effect water infection, the type that can kill, the type that insists you go to the WC , bit of oldfashioness there, every five minutes to pass the equivilant of molten glass mixed with carpet tacks, if you throw into the mix the Doctors and Nursing staff had no idea about the treatment of PD so when I politely informed them I was past my time of drug uptake and would shut down within 10 mins if my Dopamein tank was not topped up, I was given the standard reply of "the trolly will be around in about one hour Mr Fed, " and no amount of but but I need to be mobile to get to the loo made any impact, what did seem to have a result was the sight of me crawling on all fours to try and make it to the WC before doing something I hadnt done since I was 3 , I was lifted off my feet and carried to the wc in agony almost totally shut down it was a nightmare, pain almost beyond description shut down , no sleep possible,and the knowledge that the infection was so severe it could cause a deadly chest infection, oh joy of joys, yes do it finish the job please Ive had enough, and all this on my 60th birthday. This went on for another four days, oh and the ADVICE WAS,,,wait for it " if you can use the bottle Mr Fed it will save you going to the loo" I had to laugh or I would have re educated all within earshot with words taken from the HOW TO SURVIVE IN THE CONSTRUCTION INDUSTRY SWEAR BOOK, i was paralysed when that advice was offered, So as a direct result of my ordeal things were changed, When I spoke to my PD Nurse I was given a set of MUST DO,s on A4 sized paper , this combined with long an exstensive chats with each and everyone connected with caring for PD patients and things improved and have continued to do so I am pleased to say,a little knowledge can go a long way, as they say. Fed
Blimey Fed, it's the way you tell 'em. Larf? I nearly did? Cry? It's certainly a crying shame. You're a lesson to us all, especially those like me on the foothills of this journey looking up at you lost in the clouds. Ishall engrave your words on copperplate and keep them with me for when needed.
Thank you Semele,
Your opinions are welcomed and valued, if I may add to that awful experience, I am pretty sure all patients who have PD in for more than a day are given the new rules to make a repeat of my horrifying experience unlikely, the simple fact is that BLACKHEART can strike within minutes, I can sense it reaching out to me clawing me down, means a different system has to be created to take into account that I am the expert when dealing with the symptoms and treatment of this pig of a disease. The best example of this new way of making life in Hospital easier for PD patients, or patients admitted to hospital, was when I was a in patient at the Freeman Hospital in Newcastle , I have Prostate cancer and was recieving treatment there which so far so good, appears to be holding it in check, but not only that my fantastic PD Nurse Specialist, who has really gone to the ends of the earth to help me, she came with me and explained to the brilliant staff there that I was i charge of my medication and handed them the paperwork explaining everthing and whys and wherefours of how I can handle treatment to optimum effect, and it worked, the Nurses and Doctors were coming to me and asking all manner of questions about Parkinsons, they thought it was a breakthrough which would help many other in patients, I have never felt so proud of myself and my team , the simple measures taken cost, nil downtime,,nil , but above all suffering nil ! good eh.
Kindest Regards Fed
Yes, Fed, the second story had a great ending! The first was a horror tale of the worst kind.
I heard at a PD symposium a few months ago that in the US the National Parkinson Foundation has put together a kit for PD patients to take with them if ever hospitalised. It purportedly does what you had to do with the assistance of your PD nurse, informing otherwise ignorant medical professionals how to deal properly with PD patients. I have sent for one (they're free) but not yet received it, so I can't give details except that it is called an "Aware in Care" kit. I'm hoping it includes warnings about anaesthetics that we should avoid; that was my fear the last time I was in hospital.
I know it's all about efficiency and routine. But as Fed clearly demonstrates, sticking to the nurses' routine rather than the patient's routine wasn't even efficient for the nurses. Maybe we should rename Get It On Time something like It's In Everyone's Interest, Really, Just Do As We Say.