Hi All
I'm in Scotland and my dad was been diagnosed with PSP in Feb. His main complaint at the moment is the pain in his neck. He has started low dose of Sinemet, Carbidopa and levodopa and he is on waiting list for Physio.
Just wondering if anyone has found anything that can supplement these to relieve the pain i.e. massage, acupuncture, or anything else?
TIA
hi i have aa neck pillow 2 sleep wi th which iix v good in preventing pain in the Neck
apart 4m that i recommend paracetamol tp ease the pain
sorry i cant be more help
lol jill
ps p person in uk
xzzxxx
Thank you! 
Paracetamol didn't work so he's on something specific as pain relief. He has neck pillows too which do help. Night time seems to be bad.
For what it may be worth, my guy got relief from chiropractic treatments. He had a lot of discomfort from pinched nerves in his neck, and, if the treatments were the cause of his improvement, the benefits have been as close to permanent as one can say; the treatments were about 5 years ago.
Thank you. I will investigate. Worth a try.
He might have been just lucky in finding a good practitioner. There is some...er...variability (not to say snake oil) in the practice, I think. Be careful!
My husband had terrible neck pain and could hardly turn his head to one side. His GP prescribed Amiltripline for 4 weeks and referred him for physio. After 6 sessions with physio he was no better and therapist told him there was nothing more she could do for him. We then found a chiropractor and he is now pain free and can move his head freely. He still attends but on a monthly basis. Hope your dad finds relief. Nanny857 x
Many thanks for your reply. I am also looking into Bowen Therapy too. Glad your husband has found some relief. x
We are dealing with lots of pain to the back of one leg. We do massages weekly but have tried it all--chiropractor, acupuncture, injections, etc--nothing has given him relief. The massages help him to relax the muscles. We tried stem cell injections two weeks ago and the pain is still a 10. We don't expect a difference in pain relief for another 6 months from the stem cell injections. As for meds--the only one that he can tolerate is Gabapentin.
Good luck,
Nikkie (Texas USA)
Thank you for your reply. Fingers crossed for the stem cell injections to work. x
I am having a break from trying to help ease my husbands neck pain . Came in here and found this post lol .. All in the same boat .
I try stretching and msassaging helps a little sometimes.
Try asking his to stretch his one arm at a time flat out pass open if possible !
Then look the opposite way on the bad side. If both side
Do the same on other .
Google master neck collar . It's worth. Try and mention to Physio if u get to see one.
We have tried it all .
Anything you do is only temporary . O yes can try Amitriptyline low dose. Good luck ,
I am always open for any us sections on this subject . Back to massaging
Thanks for your reply. Even some temporary relief I think would be good! Will suggest the stretches to my mum. x
I'm really curios about the neck pain? My dad suffered for years with this years before PSP diagnosis I just wonder if it us significant fur research purposes? Blood flow, tightening vessels or something? Just a thought?
My dad would be 79 today he passed 7 weeks ago still so painful. I used to rub his neck I think it gave us both some comfort particularly in the latter stage with limited speach etc. All my love to you xxx
Thank you for your reply and so sorry to hear your dad has passed away. Yes my dad had the neck pain before diagnosis as well. Hope someone somewhere is considering this for some research and perhaps as an early indicator! x
It can be one f the very first signs . Although nobody realised at the time. It in hindsight.
My husband whom I met when he was 21 even had. Problem with painful neck then. He use to swim thinking it would help him .it never did , even had what they called traction treatment .
He also always had problem staying sleep would go off quickly then wake two hours later think time to get up . And had nightmare
In fact he has always been a bit of a nightmare. ..!! Lol. Only joking .
I have a painful neck and shoulders myself , cervical Dystonia . Stretching is the joy thing that gives me some respite from the pain although you can't always describe it as pain it discomfort of the heaviness .
Mum used to get bad neck and shoulder pain and lost functioning use/coordination of her right arm. She was in chronic pain and very down as a result. We used to use paracetamol syrup regularly and oramorph for bad days. Mum also used to have amitryptiline which can help with neurological pain. After 2 years of nagging finally got MRI scan on mums neck which showed deterioration in two vertebrae in neck, perhaps trapping nerves, but loss of use of arm was put down to PSP. Physio couldn't help mum as wouldn't manipulate due to osteoporosis but referred to acupuncture. Oh my the difference!!! Mum now has totally pain free days for months at a time after a course of sessions and now we go back after every 6 months or so when pain starts to return. It really made a massive difference for my mum but I know doesn't work for everyone! Mum also on Stalevo meds which has helped loads with stiffness too !!! Worth a try !!
Thank you. Great your mum has found something that has helped. Will look into this. x
I'd definitely try acupuncture and have a few sessions to see if it helps. Honestly it made a huge difference for mum but maybe depend on cause of pain. There are NHS acupuncturists and I would recommend going to a specialised rather than physio that does it as a sideline if possible. Mum saw two different clinicians, one was brilliant the other caused her pain when putting needles in so understandably put mum off going back! But she was a physio who had just done a course in acupuncture so wasn't as proficient. Good luck to you all X
What are the pain medication people or carers are using to help with PSP and do they work and did the neurologist offer any pain medication?Recipe book/meal recommendations please
Carer recommendations
Change of medication.
PSP: To do what's medically recommended or respect my mother's wishes? Advice needed.
