Hello, further to my last post, my father in law has had a visit from the Parkinsons Nurse and he won't be revisiting until 3 months time. He has given us a contact email and told us to contact him if things change. My mother in law asked if he was going to get any better (this has been a constant question even though we have tried to explain the stages of PSP). He just reiterated what my husband said that we are just managing the symptoms to make him more comfortable. To be fair I think my husband knew more about PSP than he did! The SLT has also been in touch and reviewed his diet (Level 6) and advised cutting up bread and other things into small squares. Unfortunately my mother in law doesn't always go by this and gives him triangles of sandwiches (she just can't get her head around this). The OT has visited with the physio and advised us on a few more practical things, like an over the toilet commode which is good in practice but my father in law doesn't want to use it. He wants his wife and son to wheel him on it and then lift him onto the toilet. He has 2 x carers morning and night to get him up and put to bed. We keep asking him to ask the carers to help him with toilet needs but says he doesn't need it but 10 minuutes after the carers go and my mother in law has sat down he requests his urine bottle. I feel this is unfair on my mother in law (85).
My father in law has been sent an appointment for the dentist. When he last visited in May he could use a rollator and just manage to sit on the dentists flat chair with my husband propping him up at the back so the dentist could look in his mouth. This time however, my father in law is not able to get up out of his recliner without assistance let alone be taken to the dentist. We have told the GP surgery that he is housebound (we are still awaiting some routine blood tests to be taken as was told now he is classed as housebound the appointments will take even longer - we have waited over 2 months - I'm going to chase again today). I will telephone the dentist to explain but does anyone have any other ideas? Sorry to ramble on, thank you. (For information we are in Staffordshire).
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Loveispatient23
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Hi, sorry to hear about the issues you are having.
My mum’s normal dentist referred her to a ‘community dentist.’ They had more equipment and knowledge for helping with mum’s condition. So first check it there is something like this available in your area and also see if they do home visits.
The referral took a while to come through and I did need to make phone calls and insist that it was necessary. It also came to a point where I decided the effort and distress involved in mum getting there were not worth it so we stopped going.
The dentist advice was if you feel there are any teeth causing problems get them sorted earlier rather than later and try and keep on top of dental hygiene as best as possible, I know this isn’t easy as things progress.
I posted on here first as I know someone will be able to offer their advice so thank you Willowden. I will make some phone calls and see what can be done.x
My husband has PSP. He is at the stage of needing help with everything. Your comment about your father in law waiting until the carers leave to need the toilet is my experience too. In my husbands case I think he feels more comfortable asking me to help him with this very personal task rather than the carers. In 3 months of having carers coming I think he’s only asked them once for help but within minutes of them leaving the house he’s indicating to me he needs to go.
We stopped going to the dentist this year due to progression. Decline in mobility meant I’d not get him in the car to travel there. I brush his teeth at home and hope for the best.
Thanks for your thoughts Sun-flowerwearer. Sorry to hear about your husband too. I think this is one of the worst parts for them, I can understand it, its so degrading and embarassing especially as my father in law suffers with constipation so he has a few false alarms before he actually needs to go. Thankfully we live behind them so are on hand when we can be when work allows.
Hello Beekeeper10, I am so sorry you are facing this. I do hope you have lots of support and help from family and friends. The PSP Association are fantastic in offering practical advice and support and even just an ear to listen. As others have said, in previous posts, its best to find out as much information that you can to be one step ahead in making sure you have the appropiate equipment, the support and care to help you through this difficult journey.
Would it be possible for two people to help him get into a transport wheelchair (small wheels, lightweight, foldable) and transfer him into a car, and to go with him and do the transfers to get him into the dentist’s chair? It is worth it. We kept up dental cleaning every 3-4 months even when my mother was very immobile. I took a caregiver with me the first time. My mother was not a big person, though, so we could handle her one on one. She could not sit up straight without support including on the sides, but the dentist uses reclining treatment chairs with arms, and we could get her situated in them fine. In the car I brought pillows to put around her (seated in the car’s front seat) to keep her from leaning to the sides—some people will also need a pillow to position them comfortably in the dentist chair.
Plus it would be good to know how to get him out of the house in a wheelchair and car for a change of scene. Even if he can use a rollator walker, for longer distances a wheelchair eventually becomes appropriate because of fatigue and time constraints. Outside the US though you might need to preview the route from car to dentist office, as it may not be wheelchair accessible.
When she was later in a care facility I found out there were private dentists whose entire practice was mobile dentistry, seeing people in their homes or residential facilities. But we managed to stay with her usual dentist.
Ask the GP about local disability transportation resources. They may also be able to help.
It is a dignity issue, being able to sit on a real toilet. You can get a toilet seat riser to make it higher. You can get arms for the toilet or install grab bars that would give him a handle to help him get up from it. (True, the commode chair over the toilet provides the same structure). We would transfer my mother from wheelchair onto the raised toilet seat. The toilet also had arm rails on both sides. Someone had to be with her though (we would sit in the wheelchair) because of the possibility of her tipping and falling off the toilet. We waited until she produced something on the toilet. Sometimes warm water on the backside or rubbing her lower back would get things going.
Thanks Martina_MP for the information. Unfortunately, my father in law can hardly stand up without a lot of help. He had a very bad fall a few months ago and its really put him back. Before he could walk with a rollator but can't even do this now. We have had the Physio in this week and he has given him some exercises to do so hoping that if he does them (sometimes he is too tired) he will get stronger.
Regards the toilet, all those things we have in place, with regards the handrail, he pulls so hard that its had to be refixed.
PSP is a very cruel disease and we just try to take a day at time.
I am in the middle of trying to sort the dental treatment, sounds like the US is much more wheelchair/elderly friendly than the UK.
Every area in the UK should have an NHS service that provides dental treatment at home. I had to fight for it because my mum’s nursing home had no idea! You could start by contacting here mpft.nhs.uk/services/dental...
Thank you Messier, I will take a look. Ironically, My husband phoned the dentist and explained our situation and they gave him the name of a private mobile dentist, no mention of a community dentist, When he asked about referral to a community dentist they told him to ring the GP. When he got in touch with the GP, yes you guessed it they told him to ring the dentist to refer him! Now another call is needed to the dentist on Monday to try and arrange, I don't understand why there isn't a standard procedure, surely my father in law isn't the only one to need this service, especially as he is a NHS patient.
Physiotherapy is essential for PSP. We have 3 sessions a week. Not all Physiotherapists are suitable we have had 8 and the two we settled with both had experience with PSP. Have really helped Ben. We also go to hydrotherapy for 1 hour and it is amazing. There is a clinical guide by PSPA called A Guide To PSP for physiotherapists which is good reading
Dentist wise my partner goes every two months they advised an electric toothbrush and pharmacy only toothpaste and special flossing tools be on to dental immediately
Thank you Goodact, 3 sessions a week, that's good going. I'm glad its helping Ben. The NHS Physio will visit again in another 3 weeks but has left exercises for my father in law to do, just hope he keeps up with them as they do tire him out (he is 87). We gave a copy of the Guide to the Occupational Therapist when she last visited, but such a great idea for others to know.
With regards the dentist am still in the process of sorting but hopefully will get it organised.
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