I’m new to this forum so just wondered whether anyone could offer any words of wisdom. My dad was diagnosed with PSP at the beginning of the year, having initially been incorrectly diagnosed with Parkinson’s. He is still taking his Parkinson’s meds but other than that is refusing any more help as he says he doesn’t need it.
His mobility is poor but I think with some additional aids he could be more independent but he won’t hear of it.
Does anyone have any suggestions on how I can try and help both my parents deal with this diagnosis and encourage them to accept the help that’s out there for them. I think they’re both frightened to look into the future so are perhaps burying their heads in the sand a little bit, which I totally understand. At the moment I feel quite helpless though!
thanks
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Sunshine1005
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It’s very common for neurologists to think Parkinson’s Disease as the symptoms in the very early stages overlap. Things need to develop before they can narrow it down. Also almost everyone is given Sinemet to try out in the hope it is Parkinson’s after all. A few PSP people respond to Sinemet as there is a sub type called PSP Parkinson’s where the symptoms are very similar.
I’d maybe ignore the PSP diagnosis at this time if your parents don’t want to acknowledge it and say even for Parkinson’s and older age groups it’s useful to invite the occupational therapist OT into the house to assess access and safety features. Ask the Gp for a referral
The OT was our first call and immediately fitted rails, bed rails, shower stools and other kit and told my husband it was better to be way ahead of when you need things so best to be organised. The OT that came to us was brilliant and liaised with the NHS Physio to help my husband too as the same team. Within a few months of diagnosis we had to have a hospital bed and commode from the OT. It also helps to have someone else to chat to your parents to help them come to terms with some of the limitations that will arrive for them both… carer and person with PSP. Maybe say to your parents it makes you feel better to be doing something and could they humour you!
For context my husband was diagnosed in May last year. Was able to walk into the consultation room and drink a cup of tea coffee on the day. He now cannot stand, walk, do anything for himself, has a catheter, cannot speak at all, is on a liquid only diet and is very advanced… that’s one year from diagnosis and he’s 64 now!
Progression is unstoppable so although they don’t want help now it’s going to be inevitable very soon sadly x
Thank you for replying to me, I do appreciate it. I’ve actually spoken to the local OT team at the council & they’re going to come out so hopefully that will be beneficial. It’s so difficult & I’m so sorry to hear how quickly your husband has deteriorated - I hope you’re getting the support you need too?
I’m going to try & tap into all the advice and support on the PSP website that I can so at least I can try and understand more and hopefully be of some help when they do eventually want it.
Hi, I thought I had replied earlier but must have typed and not sent so now lost in the ether. I would echo everything Sun-flowerwearer has written. The OT can be your mum and dad's greatest help and friend in this and as Sun-flowerwearer says getting them involved earlier can be helpful. They approach with much care and consideration and will talk rather than force things upon. I would also recommend you give the PSPA helpline a call. They are a great resource for you and give you the opportunity to talk things through, offer insight and useful advice and can inform of things you might need to consider to get in place now and as things progress such as blue badge benefits power of attorney etc and helpful services such as ot, physio and salt you can can tap into xx
Something that helped me have difficult conversations with my Mum when she was diagnosed was our local hospice, they spoke about DNR and advance care plans got them written and signed. We agreed about PEG feeding (she doesn’t want it) they explained what would happen. And then they support me.
It may also be helpful to contact the parkinson’s nurse, they also handle PSP. At the beginning we didn’t always know who to contact, OT, Physio (and they both have different teams at the hospital and the council), doctor or Social Services. A phone call to the Parkinson’s nurse was sometimes extremely helpful.
My husband continues to take Parkinson's medicines as advised by our neurologist. Recently increased the dose and frequency as it is still beneficial. His mobility is also restricted. He uses walker and travels by auto(public transport) to his physiotherapy and speech therapy sessions. We go for concerts, movies, outings where he uses a wheelchair. With some adjustments, your parents can deal with PSP effectively.
Hi sunshine1005. This website as helped me a lot. My wife was diagnosed June 2019 with PSP. She can still eat the same meals as me, she can still speak, All though it's a little slurred. She can still walk as long as I hold her hands for support. She can still use the toilet with my help. This disease affects people differently so talking to your parents and giving them a heads up is a must. Good Luck
HI SUNSHINE ....... Sorry to hear ur news, but be sure - it's not all gloom. PSP means "Please Stay Positive!
I am M, age 82, diagnosis 6yrs ago, and my mobility is going down - like no more driving- but still active and involved in life and friends. .... with the help of targeted exercise daily, org veg, med diet, supplements and some medication(for sleep). Have kept a record of possible assists and can send to you if you wish, and if u send me ur email address.
About 10 different types of PSP, all different rates of progress. Mine also seems PD variant, the slowest developer.
Best wishes to you two, and hope you keep contact TimbowPSP
Hi Sunshine - I had exactly the same issue with my parents not wanting help as they were "fine" but eventually they saw the merits of the OT support, extra handrails etc. And that has helped with the safety and stability all through the home.The phrase I used to convince them was devices for the current time - I used the example that if their sight was bad they bought reading glasses, when it worsened they got prescription glasses and they used them to improve their sight limitation at each stage.
Hand rails, grab rails, rollator walkers etc are the same thing just an aid to support dealing with a current health issue. They did see the sense when I outlined it that way & my mam has benefitted from being able to continue to move freely in her home, go to the shope etc with her walker supporting her & helping her balance. This is much better than her staying in, sitting idle and declining rapidly, as she was starting to when not using it.
I hope you can encourage your parents to see these items as the aides to a better quality life in and outside the home & that using them will help prolong what can be done to enjoy the time they have.
Our family motto now is "do what we can", we don't mourn things we can't do anymore, we just focus on getting out there and making the best memories we can!!
I would highly recommend he maintains an active exercise schedule within safe measures. My dear mother was able to walk until she took her last breath. But she maintained 2 to 3 days of water therapy at beginning than moved to land therapy. She had acupuncture and Nuero massage to encourage circulation weekly. I honestly couldn't not done the above without her willingness and effort, depression is common and I was fortunate that she never allowed this terrible diagnosis to take her beautiful spirit and resilience.
Regarding Sinmet medication after a year and half I removed it from my mother since this medication was not helping and lead to a mouth tremor. I kept her on CQ10 and CBD and incorporated other supplements based on her blood results. This varied every 3 months. I also did incorporate a plant based diet 4 out of 7 days which eradicated her of diabetes her last 3 years after being plagued with this condition for 39 years. I would be open to speaking to you offline if you have any other questions. Keeping you and your family in my prayers for strength insight patience and peace during these challenging times.
As the "second wife" I'm going to offer a slightly different perspective. My husband's grown-up children have been very supportive and helped us in every way they could since the diagnosis. I love them to bits - but...
During the first time after the diagnosis and the early stages, our priorities were to keep thing as "normal" as possible and spend time focussing on things we enjoyed, time together as a couple, conversations about the "here and now", travel and events. While we were both (probably me more than my husband) looking into information about PSP, prognosis, and support structures, PSP was not given centre stage and this was a conscious choice we made.
My stepdaughter contacted PSPA and social care etc - some of this was welcome support and some of it felt disruptive - and because my husband & I were not party to the conversations, there were misunderstandings and potentially delays in getting the right information to the right places. While trying to stay polite and grateful, I would have wished that they had "saved it" for when we wanted help, on our terms.
It's difficult. I've watched my parents go through difficult diagnosis(s)and tackling things differently to what I would choose. I've also felt the frustration of being to far away to help the way I wanted to do. As parents we've gone through the process of letting the children make their choices in life and refrained from lecturing or condescending when they make choices we disagree with. Now we expect the same courtesy and don't want to be treated as children...
So - try to respect their choices. By all means offer help (and mean it!) just let them choose what form that help takes and when they want it. Yes, PSP could progress quickly but it can also be a long slog. You may be surprised what their current worries are, quite possibly they are different to yours.
I say that - obviously every family has different dynamics - all I'm implying is that there is more than one side to it. I wish you - and your parents - a gentle journey with this awful disease. 🌻🫂
hi. In my mums early stages we got a lot of help from social services. Lots of aids from Medicare. Rails, shower seat. Loo seat wheelchair. Although I bought a few things like walker and a good wheelchair from eBay. Social services also helped organise carers to come. They came to help with personal care and help mum do tasks in the early stages Basic things like chop some carrots make a drink. They helps put us in touch with a daycare centre for mum to go to a twice a week to enable my dad to have some ‘me time’ Their partner needs some rest bite. Mum is now in her forth year living with cbd. She did go into a care home for some rest bite when my dad ended up having a mini stroke. Mum has never come out of the home. She has been there for 18months now. she und that dad could not manage her needs any longer. He still manages to visit her daily. It’s been a very long journey with many challenges. Get all the help you can. It’s there for you and you are entitled to receive it. Good luck. Jiggyjo
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