Hi, I'm new to this site, my mother in law has been told she has PSP, after being told she had Parkinson's. over the last year she has deteriorated badly. Has trouble speaking, moving and has had several falls. Seems to fall asleep all the time. Do any of the medications help with this condition. Any help or advice will be gratefully received
Martin
Hello, Martin. I'm sorry to say that for most people with PSP medications make no difference. We tried everything going, as it didn't hurt to imagine things that could get better or that at least the progression could be slowed. Speech therapy and physical therapy did help for a while, but have to be undertaken while the patient is still well enough to participate. I wish I had something more hopeful to offer.
Best wishes, Ec
Hi EC, thanks for for the info. It seems a pretty cruel thing, and from the research I have done, does not seem that much can be done. Thanks for your honesty and advice, much appreciated.
All the best Martin
Martin this is the most horrible illness ever, my husband is coughing all the time and chocking, can't talk much, in a wheelchair now. Welcome to the best site ever xxxxx
Yvonne I'm sorry to hear that, it is defiantly a horrible illness. But is good to talk with people who have exp in dealing with it xx
I am so sorry for the diagnosis Martin. I am 74 years old and have been diagnosed with the same condition. Where in the UK are you. This site is very useful but there does not seem to be a cure. We are always hopeful!!
Hi smallshaw
Thanks for your reply, we are in Billericay Essex.
Hi Martin - my dad was taking Parkinson's medication (Levodopa) and some for epilepsy (he had ONE episode at the start of his illness so his neurologist thought it'd be safer to keep taking this) and some to raise his blood pressure - the combination made him very sleepy, sometimes in the middle of eating, but I also think it's the illness itself. Then eating became really difficult (coughing, choking) so he ate less and less, or maybe the illness cut his appetite, so less energy and even more sleepy. He had PT twice a week, speech therapy once a week, I really believe they helped for a bit, but in the end he got too weak for any of that. He passed away in his sleep, at least it was a blessing for that.
This site is really good for straight forward information - both from people suffering with PSP and their loved ones. Sometimes not an easy read but helpful to give you an idea what it's really like. You can use the search button for anything specific, so much has been talked about. There is no cure YET but a lot of research going on.
Wishing you lots of strength - plus don't forget to love the person underneath this horrible disease. My dad's mind was still very sharp up till the end - and he never stopped loving us.
Lieve (previously in Belgium where they have NO PSP organisations, I came back for two years to help my mum look after my dad - now back in the States)
The meds are designed to "slow down" the PSP - which is very unforgiving; my wife has it and its ugly. Get a wheel chair and understand that PSP usually hirts one side of the body... it takes a good year for the traits of PSP to show it's traits. I feel very helpless.... God is in charge. Pray for you folks. Ben
Having a wheel chair ready is a great idea. My husband too has more difficulty with his right side. On occasion, when he was tired, we had a hard time getting him from the bathroom to his chair. I was not prepared and grabbed the desk chair which had wheels to help him. It's great if you can stay ahead of the disease, but that seems almost impossible to me as you never really know what will come next. Good luck to you are your family. It's tough.
HI Martin and sorry to hear about your mother in law's diagnosis.
I echo evryone's advice here. A wheelchair is a must. Mum also has a frame with wheels which helps her move forward but she really struggles to walk now. The drugs she was on to start with didn't do anything so she came off them about 9 months ago. The only thing she takes is codeine for pain in her leg.
Anticipating what will come next is vital but hard as every sufferer is different. Although it's progressive, I've found that Mum can plateau for a while and then take a dive. When dealing with social services, doctors, therapists etc, the lack of understanding of PSP can be an issue as they often deal with what is presenting at the time E.g. falls, tiredness, verbal outbursts rather than looking holistically at the problem. Being well researched helps counter some of this and raise awareness.
Hope this helps. All the best.
Hi Amal,
That's is really useful, thank you. Great site and the comments I have had really have helped us understand things better. None of it is what we was expecting, no surprise there but we would rather have the truth to help us prepare.
All the best
Martin
Hi Martin
This is definitely an illness with a difference and hardly the professionals don't understand
Try and get a good team Drs o/t
Community matron social worker to help and get things sorted for help needed
I've found that when Archie has to go in hospital or he has appointment I take a folder containing all about PSP then ask them to read it so they know what they are dealing with half of them look at me stupid as it's 110 pages full of info for all
You will also get comments from all the good people on here too
The information I got off the psp site
Best wishes and take care
sue xx
Mum just been diagnosed with psp
