So much happening lately, things seem to be progressing very fast, last Friday at 7.30 am. in desperation after being up all night for two nights with Ruth, my wife ,I had to take her to the hospital,( not for the first time,) as the pain in her throat had become unbearable. The usual chest Xray for aspiration, look down her throat , Doctor said cannot see anything wrong take her home give her plenty of vitamin C, it should be alright in a couple of days. In amazement I replied you just said that you could not find anything wrong , If you have looked at her medical history which you have after previous visits you would see that she has got PSP, I said that am not leaving until I see someone in in charge, with that she came back with a consultant, she explained that they could not treat her as they could not find anything that could cause the problem. Get in touch with the neurologist , And so home we had to go. By the way neither the doctor or the consultant had heard of PSP, unbelievable. Ruth lost her voice about twelve months ago, as well as cannot walk unaided, making load noises day and night trying to relieve the pain in her throat. Sorry for going on so much but just felt I had to write it down for some relief .
Nothing for the pain? Oh, I am sorry for you and your wife and simply horrified at your poor treatment. How can they justify this?!! I can't believe (don't want to believe) that there was nothing they could do to help relieve your wife's suffering. To have to stand by helplessly as someone you love (or even someone you don't!) is in pain is one of the worst experiences of life.
Do you have hospice care at all? I wish I had some advice, but all I have is concern. May you find some help soon! Love and peace, Ec
Ugh! I'm so sorry Brian. When I tell anyone (prospective places to move them to, home caregivers that can come in, etc) about PSP, I never find anyone that's ever heard of it. I can't believe they couldn't have gotten an on-call neurologist to come in or something. Ridiculous. I really hope you can get some relief for her and for yourself too, soon!
I'm so sorry, how awful, unfortunately hardly any of the medical profession in about Psp, disgusting really!
If you are in the uk I'd really urge to get a referal to your local hospice, they will appoint you will a clinical nurse specialist who will definitely be able to manage your wife's pain!
Your wife shouldn't and I mean shouldn't have any pain this can be managed, please let us know how you get on
Go to a neurologist...Go to a pain specialist...Go to an acupuncturist... a chiropractor Go to a neuropathist (pain management) I did see in my quick look of neuropathy that a vitamin deficiency can be key to pain. Like someone here said, keep looking. hospitals look only for the evident...nothing specific ...Who knows , the pain in her throat, maybe stems from some other body part ...Get to one who specifies in your wifes exact condition...not PSP....but pain!
I'm sorry you have to go through this ..Im sorry your wife has to go through this....Thinking outside of the box my lead you to answers
Hi Brian, we feel so helpless seeing our loved ones suffer with no one helping don't we. A silly question probably but has your wife told you her throat hurts? My husband can't speak, is PEG fed as has difficulty swallowing, makes moaning noises a lot of the time, day and night but usually indicates he isn't in pain. He was very noisy today and put his thumb up when I asked about pain so I gave him paracetamol through his PEG and he went into a silent sleep. I never discovered where the pain was. Making moaning noises is common with PSP and is very distressing to hear. I agree with the suggestion about the hospice. If there is pain, they should be able to do something about it. The staff at our local hospice have heard the noises my husband makes and got the GP to prescribe Lorazepam to calm him if he gets too distressed.
I do hope something can be done to help your wife soon. In this day and age, no one should have uncontrolled pain.
Sorry Brianfor the distressing time you and your wife have gone through but good on you for reminding them to check your wife's records and insisting on seeing someone in charge which unfortunately they did not bring a positive response. Hope your wife's pain has been relieved or has eased. Nanny857 xx
Brian, thanks for writing it down , it is not just relief for you but gave me some comfort that I am not alone...... lets make a film Carry on PSP Carer , only difference there are hardly any jokes in it... chin up mate
I can't believe you were offered nothing to try other than vitamin C. Can she still swallow? What about a liquid pain reliever, that might coat her throat on the way down? There are also numbing throat sprays for sore throats that might provide some relief while waiting for a real solution.
Could it be neck pain rather than her throat? Did they X-ray her neck?
Brian how frustrating this must be. I will keep you both in my prayers. You may have to try a different hospital.leave no stone unturned.Someone out there hS to know where you can turn to for help.
In my experience I just couldnt understand how doctors and nurses had never heard of psp and you are up against it then, as if it isnt hard enough bloody frustrating. Takecare all xx
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