I hope I do not hurt anyones feelings but I keep reading about loved ones passing if you do not mind would those of you have lost of loved one to PSP could please email me what part of Having PSP took them? As far as I have been told the diese is not what kills you but it will be asperation getting food in the longs. I would be greatful thank you
krystetorres@yahoo.com
hi krysto I do not know of anyone who has died but they do say very little die of psp it is mostly from choking or from food into the lungs and pneumonia sets in I do not know what percentage that is mate and I do not want to find out I am quite happy being above the ground thank you very much peter jones queensland australia psp sufferer and im not going anywhere just now matey
Im so glad your not going anywhere I am not letting my Aunt Bev either, I keep her fisty as ever.
hi kystie well mate you must be the carer you have my admiration mate you tell auntie bev to '' HANG INTHERE MATE '' and thats good keep her feisty mate its good for you as well as her my wife is much the same it keeps me in check and behaving myself\
all the best to you and auntie bev see yer peter jones alias puyella psp sufferer queensland australia
The world is definitely a better place with you in it, Mr. Jones, so do stay upright, please. I'm still singing your version of "oh dear, what can the matter be?" And laughing. Perfect!
he two cedars well lets hope I do not lose this one I was getting very frustrated with the puter especially when its nearly time to finish ah well never mind its just the little things are sent to try us===== I think mates \\ well my daughter rang us from her cruise and said the boat or ship was all over the place coming back she had to stay in there cabin I remember coming oput from England to Australia the ship was only 24 thousand tons\\ no stablerlisers on it I was sick before they had even untied the boat from the dock thats how good a sailor I was mate that's why I want to go on a cruise
to find out whether I am a good sailor or not id better not let my wife see that otherwise she will say well you had better bugger off on your own then calling a ''spade a spade'' a plain talker just in case my wording is a bit difficult for you id forgotten about that mate I would not say its the queens English \\\\\\but I would think you would get the general drift of things we are not that much different are we mate
we are still human beings and have been around for a long time I can just hear mrs c saying you speak for yourself \\\\\\ ah well mr c I hope you can do all the things you still want to do mate and nothing will stop you but mate please leave the big tractor alone for all our sakes its scary just thinking about it I will leave it at that mates so goodnight mr and mrs c take care
at last I have got it without losing it peter jones queensland Australia psp bloke
Good morning, Mr. Jones. Thanks for fighting the computer fight and staying in touch! I think a cruise is a great idea, as long as you hang onto the railings - and stay on the right side of them! I was running for a ferry to Greece when I was much younger and fell and sprained my ankle. I discovered that the boat was a good place to be, because I could get around without crutches using the railings, which are everywhere. It's something to think about...maybe Mr. C and I should go on a cruise next year. I like the idea of those river cruises in Europe, or maybe one along the Alaska coast. Our budget probably would take us as far as the Erie Canal, but that could be fun, too. And no seasickness!
We say "calling a spade a spade" here, as well, though most folks now wouldn't know one if it whacked 'em upside the head.
Mr. C had a couple of bad falls this morning, one in the shower and one off his chair at breakfast. Nothing but a few scrapes and bruises, thank heavens, for him. (My heart took a thumping and my arms are a bit over-stretched.) He did the mowing yesterday without a single mishap. I guess he's safer on the big tractor than he is eating his cereal!
Here's hoping everyone stays upright and safe. Love and Peace, Easterncedar
Thanks for asking this difficult question, Kryste. I was told falling on the head and pneumonia are the major causes of death from psp, but it seems that several of the folks here have lost their loved ones quite suddenly from other things. I likewise don't want to be tactless, but I have wondered, too, and it seems an important question for all of us carers trying to negotiate this situation. So if there are any readers out there who don't mind sharing this painful experience, thanks, it would help. Love and peace, Easterncedar
My husband has just asked the very same question.He had a coughing fit this morning and thinks this is what will kill him.I will be eager to hear of others experiences. Hugs to all carers and sufferers.Ruth.
What got Tony in the end was a chest infection - the hospital got him through that, and he went into the care home (where he had been going once a week for respite and a bath) for "palliative care" because he was so weak and had been fed with a nasal tube.
That was in January 2012 and the care home kept him going until the December but I think his body was just too weak. He was bedbound all that time, and gradually slipped down the hill until it was time to let him go.
Mo
HI PIIPPALINA./RUTH
WHA T A LOVELY ONLINE NAME
I HAVE HAD SOME CHOKING FITS WITH HAVING A BAD COUGH FOR SEVERAL WEEKS BTU I AM SITLL HERE AND UPRIGHT MSOT OF THE TIME (APART F ROM WHEN I AMFLAT ON MY FACE OR MY BACK)HAIVNG FALLEN OVER)
BUT IDO NTO THINK THEY IWLL KIIL;L ME
I THINK I, LIKE PETER JONES HAVE THE SLOW SORT OF PSP AND THAT I SHALL B AROUDN FOR A WHIEL YET AND WHO KNOWS WHAT WILL GET ME?
I HAVE A DIRECTIVE DRAWN UP - NO PEG/ NO ARTIFICIAL RESUSCITATION WHEN I CAN NNO LONGER DO ANYHTING FOR MYSELF ETC ETC
BUT DO NTO HINK T HA T TO B FOR A HWILE YET
WHO KNOW S AND THER EIS NO POINT WORRYING ABOTU CHOKING (TELL YOUR HUSBAND)
LOL JILL
Hi Jillan6
Thanks for your reply.My dog is called Pippa, just an extension of her name,sounded good.Have taken your comments on board and did actually tell him that everyone suffers different symptoms which seemed to satisfy him for the time being.He too has specified no pegs or resuscitation and no hospitalisation if pneumonia sets in he wants to be treated at home.I hope I will be strong enough to care for him as I do not want him to be in a care home.Keep strong and we will help each other on this site.God bless.Ruth
My? Too.
Hi, With my wife it was not aspiration pneumonia or a bad fall or any of the "usual" things. She had NO pneumonia or bad falls through out the disease! In the last weeks before her death she just stopped eating much although she only had very, very minimal swallowing issues. She said she wasn't hungry. I'll never know if she was delibertly starving or just a normal process. One day she started breathing fast then a day later her breathing became slow, like sleeping. That second day her breaths just became further and further apart until she took her last. No gasping or struggling for a breath, just peaceful passing. I'm so thankful that she went that way and that God gave her a pass on many of the symptoms others suffer. Biopsy at death confirmed PSP. This disease is so unspecific that each patient can be very different than another. I logged 24 symptoms others had reported that my dearest Sharyn did not have to endure. Hang in there and don't try to figure this disease out because you won't, for the most part.
Jimbo
My husband is still alive (PSP) but my father-in-law died of the same disease (PSP). He could not eat or swallow and his wife and children decided to just let him pass. At that point he was in bed 24 hrs a day, demented most of the time, and miserable all of the time. He died within a week if I am remembering this correctly.
Jill
Costa Rica
hmmm....and we're told psp is not genetic. If not, that is a hideously unfair coincidence.
Our neurologist said that more recent research says that it can be inherited. Probably much more out there that is misdiagnosed as Alzheimer's or Parkinson's. We thought that my husband had Alzheimer's because his mother had it and we didn't think PSP was genetic. But , no it turned out that he has all the classic symptoms of PSP. Exactly like his father had at the same age of onset. I really don't think they have a lot of information on PSP. The say it is rare but probably not at all, just misdiagnosed.
Jill
Yes, I'm sure that that's true, that it is not as rare as it is just missed. I just read an article on what stress does to your brain, and it sounded like psp, too. Time to for me learn to calm down!
Also, it is a particularly good question to ask, although not everyone wants that information. It depends on your own style of handling things. I personally like to know what's ahead so I can plan while others find it just makes things more upsetting for them. So never worry about asking questions and anticipate that everyone might take you question in their own way. We, like the disease, are all different.
Jill
Costa Rica
My wife died due to pneumonia but I don't recall any violent coughing fits. She had lost a lot of weight and a few days earlier required to be fitted with a catheter as she was unable to pass water. She had not been offered any medication but was provided with morphine patches. It would seem from posts on this site that few have benefitted substantially from any of the medications on offer, and when compared with the adverse side effects I have no real regrets in that regard.
I was completely unaware that Margaret was so close to the end; at the time I didn't think people died of pneumonia any more, and we were only two years into what I was expecting to be a 7 to 10 year journey. Looking back on it I must have been either blind or stupid not to notice the increased rate of decline in her condition. A visiting hospice nurse alerted me in time for the two daughters resident in the UK to be at her bedside with me. Her breathing at the end was not laboured but the period between breaths gradually increased and eventually stopped. Frankly it was a relief that she no longer had to live with that awful disease; that was five years ago and contrary to conventional wisdom I haven't found the passage of time helps a great deal.
Best wishes, Jerry
I am so sorry for your loss, and thank you so much for your reply I have been taking care of my aunt for 3 years now and we are going to UCSF for research soon so I am just trying to keep on top of things thank you so much.
I lost my lengthy reply. Dad died because his brain simply wouldn't allow him to swallow any more. It took two horrible long weeks for him to die of starvation and dehydration. I won't go into detail but to see a once chubby big man turn in to a bag of bones was horrific. It's the most evil disease and I'll never forgive it for taking away the best man I know.
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