Hubby's chin has gradually, over several weeks, worked its way downwards. It is now stuck to his chest. He can not look up and feeding is difficult. His sticky saliva accumulated, went down the 'wrong' way and caused an infection (his first). Now for the GOOD NEWS. On the first day in hospital his chin went up, to the place it is supposed to be and remind there since, hopefully for ever. The doctor does not know what caused this reversal. The only medication he has is 20mg of Amitriptylene per day plus the antibiotic and paracetamol.
On admission to hospital his oxygen level was low; he was given oxygen for 1 1/2 days. Could that have caused his hed to raise? Has anyone had a similar experience?
Maddy
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MaddyS
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In Parkinson-like conditions, Dropped Head Syndrome is characterized by severe weakness of the muscles of the back of the neck. This causes the chin to rest on the chest whether standing or sitting.
It has been shown that such sufferers may have a slightly lower oxygen saturation in the blood (possibly due to inactivity, and being unable to move around). By giving oxygen it is quite possible this improved his neck condition to the point where he could raise his head. This is not well researched. Sadly, I think the condition of head drop will return, and if there was an effect with the oxygen, it possibly will not be repeated. However, I do hope for hubby's sake, that the improvement may continue for a long time.
I assume he's been on the Amitriptylene for some time. This can cause some moderate improvement in motor (muscle) problems in PSP, but also research shows it can cause twice as many adverse events (one being postural instability - so many neurologist do not use it for PSP patients).
Thank you for asking about my wife. May I just rant on a bit?.......
As you can guess, she is progressing slowly downhill. There have not been any sudden huge changes, but she is more fatigued (if that is possible) and deteriorates as the day goes on. By evening her speech is so slurred I find it hard to understand her. We have now gone to the thumbs up and thumbs down method when I ask questions etc. She does have a little "bright period" in the morning, but even this is being eroded. She cannot move without full support, and only short distances with freezing gait. This is harder for me as I feel I'm taking more of her weight. I'm having an Occupation Therapist reassess the situation to give me ideas about moving her without straining myself. Her coughing and choking on liquids is a bit worse (she doesn't like thickeners in her tea or coffee) , and it is after a choking bout she often indicates she wished it was "all over". I'm a bit of hard task master, but I adhere to a strict routine with her, and won't allow her to sleep all day (which she would probably do if I let her). I also "make" her do some minor exercises. She's very obliging!
She does have her chin on her chest all the time, and has varying degrees of neck pain. I don't use medications for her condition (as often prescribed by some neurologists), so for neck pain it is heat packs, ibuprofen and an occasional codeine (which "zonks" her). She has some of the other usual symptoms like blepharospasm, and great difficulty finding words, and a small measure of confusion. Although diagnosed with breast cancer a month before PSP (along with a mastectomy), we never think about the cancer, only the PSP!
All her wishes are formally documented, and she does not want a PEG, nor any medical intervention (not even treatment if she develops aspiration pneumonia). She likes the idea of giving up on eating and drinking, but at present she still eats "well" (although the amount is a few spoonfuls of "soft and moist" food) - but she becomes too tired to feed herself. I will plod on with this regime.
At the end of this year she will have had initial symptoms of PSP for 6 years. She may now be reaching a stage where things progress more rapidly, but no one can know for sure.
As for me, well, I keep plodding on, and (inwardly) curse this disease every day. It's robbing my wife of her lovely life bit by bit and, of course, affecting the whole family. I know others on this forum have more difficult times, both the sufferers and carers.
So, I've said my bit for the day......take care as you care for hubby, and I trust he'll continue to "keep his chin up" !
Hi Strelley, just to say I am thinking of you and sending you lots of love. Like you, I try hard to keep S on the straight and narrow! Personally, I think it's the only way! Well it's the only way I can cope!
Others may be coping with more than you at the moment, but that doesn't make what you are going through any easier.
We all cope in our own way. For this side of the ether, you come across as someone who REALLY knows what he is doing! I know you are laughing and saying "if only!!!" But you are doing a great job with your wife and helping the rest of us through this "£&@££&&@" !!!!
Keep strong for your wife and DONT FORGET the most important person in your wife's illness. YOU,!!!
Thanks Heady for your encouraging words. It's so good to share with other carers who are "on this PSP road" (and those who have finished this journey). While it may be tough for us, I cannot imagine what it is really like for our loved ones who have to struggle with the disease itself.
Heady, I was reading Strelly's brave, candid reply and my first thought was apathy as well. On a good day he ( my husband) is painfully aware of his present state, and on a rough day he is oblivious. While we, as caregivers, fully comprehend the PSP horror 24/7. We try to push it back (on a good day) out of our conscious awareness, and (on a bad day), it is there front and center in our face. Strelly I am sorry for your wife slipping, so is my husband. Knowing it was coming does not make it any easier to accept. I am tired, sad, and overwhelmed, all at the same time. But everyday I get up in the morning to do it all over again. And I take solace in knowing others across the country and world live and understand what we are going through here.
Thank you all for sharing and being here. Much love JGC
Hi Goldcap. I think it the drip feed of PSP that's the hardest to take. Each day, you know another tiny bit of your loved one is gone and not coming back. So you are constantly adjusting how and what you do. Unfortunately, I notice and adjust quicker than S, so again I am coming across as the nagging wife, stopping him do yet another thing! Wouldn't it be lovely to be the nice guy, just once in a blue moon would do, I' m not greedy or unrealistic! Like you, I am just tired!
IT SI THE OPPOSITE WITH ME AND MY PARTNER=- I AM FULLY AWARE FO MY PROGNOSIS - HE IS NTO AND PREFERS NTO 2 KNOW1
SO IT MAKES IT V DIFFICULT TO ACTUALLY TALK ABOTU HTE SITUATION AT ALL
IA M INA WHEELCHAIR FOR GOING OUT NOW AS IT TAKES THE STRAIN OFF ANYONE HWO IS WITH EM RE MY FALLING ON TO THEM AND I AM A REAL DNAGER TO MYSELF AND OTHERS IN THE HOME AS I AM STILL WALKGIN AND THROWIGN MYSELF AT FURNITURE HCAIRS ETC
IT SI THE OPPOSITE WITH ME AND MY PARTNER=- I AM FULLY AWARE FO MY PROGNOSIS - HE IS NTO AND PREFERS NTO 2 KNOW1
SO IT MAKES IT V DIFFICULT TO ACTUALLY TALK ABOTU HTE SITUATION AT ALL
IA M INA WHEELCHAIR FOR GOING OUT NOW AS IT TAKES THE STRAIN OFF ANYONE HWO IS WITH EM RE MY FALLING ON TO THEM AND I AM A REAL DNAGER TO MYSELF AND OTHERS IN THE HOME AS I AM STILL WALKGIN AND THROWIGN MYSELF AT FURNITURE HCAIRS ETC
thanks for your replies, lots of love from me to all on this site.
Hubby is coming home from hospital today. Medequip .have delivered a "ReTurn 7500". This should help me move him from chair to chair. Until now I would hold his hands and pull him up ( he can stand for a short time provided I hold him), then turn him and sit him into another chair or bed. So far this worked well, the ReTurn will be a lot safer.
Hi Maddy, I am presuming that this ReTurn is a hoist. Have fun, not sure I'm going to be the right sort of person to operate one. Still I'm sure it's going to be a lot safer for both of you. Best of luck to you!
Having worked/used a lift for my dear wife Sharyn I can tell you it's easy. If the person falls to the floor the lift can get them up again without pressure on your body and risk of hurting the patient further. When my wife could no longer stand to do transfers we used the lift. You can even bathe/shower the patient in the lift. Great tool for caregivers. Jimbo
That sounds like the standaid Tony used, lockable so as not to move while his weight transferred to it, but unlocked could be turned and wheeled to the next place he needed to be. The carers used it for transfer from sitting on the edge of the bed to an upright position. There was a belt too. That way, no-one had to take his full weight .
Hi Maddy, What is a ReTurn? It has become very difficult for me to help my husband transition from wheelchair to chair or bed or toilet. It has been 4 years since he was diagnosed with PSP. I only recently found this site and am grateful for all the information I have gleaned from my fellow PSP caregivers. I have morning and evening help but am on my own during most of the day and nights when he wakes several times and wants to pee. I was told his progression is slow. Seems to take two steps back and one step forward. I use a walker(bad back) and have COPD I worry about being able to continue as caregiver. JVBril
I take my hat off to you. How do you manage? I'm strong and healthy and find it difficult at times. Not with the physical aspect of caring but the stress of seeing him slowly deteriorate, unable to speak and almost blind.
This transfer trollie is called a ReTurn7500, can also be used with a belt. Have a look on utube. I have only used it for one day. it can be a bit cumbersome but does stop carers back injury. Instead of me pulling him up to a standing position, he can, with a little help from me, stand up himself.
Strelly, Keep that warrior spirit alive my friend! Thanks for all the great posts over the years. They helped me and I'm sure others. Today would have been our 25th anniversary so I'm sad but not defeated. Stay in touch! Jimbo
A year ago my wife's chin seemed glued to her chest. Her neurologist gave her a very mild botulinus toxine (botox) injection in her neck muscles. When this had only a very temporary effect he gave her a stronger - but still not strong - dose, having explained the rare but very real risks of interference with her breathing, and this time it did the trick. Now her chin is still lower than normal but no longer a problem. Incidentally, the neurologist is also using botox to try to alleviate the "spasticity" in her arms, so far with only limited success but he will try again soon with a stiffer dose.
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