Hi, just got a diagnosis for Mum of PSP, after over a year of trying to find out what was wrong. It's a mixed reaction of 'it's good to know' and 'we wanted better news' , but I guess everyone has been there. A bit overwhelmed with all the reading and where to start on the to do list. The doctor recommended medication to see if it would help the symptoms, bone scan to make sure Mum is fit as poss if taking a fall, applying for blue badge and attendance allowance, organising a LPA, making sure the house is owned severally, thinking about long term practicalities of the house, making sure a will is in place and enjoying our current time. My head is now spinning! Any top tips where to start from people that are going through this would be greatly appreciated. Thanks
Where to start?: Hi, just got a diagnosis... - PSP Association
Where to start?
Welcome. Sounds like you have the list of things to do well in hand. Pick one and do it. Then move in to the next. This is a slow progressive disease for most. There is going to be time to get it all together over the next 6 months or year. Situations will present themselves along the way. This is a very good place to turn to for help dealing with things.
Thank you, one at a time is probably very good advice and certainly makes the to do list less daunting x
Jeff,
"Situations will present themselves along the way." This is exactly how it works, at least what we've seen so far.
Welcome to the site but am sorry you had need to join. It’s good to see you are getting prepared for the future. You asked for tips; as you say, thinking about the practicalities of the house, I think is an essential one of the first things to think about although all the others you mentioned need action as well. Your head will spin to start with but it will all soon become part of day to day living. Thinking of the house, what will you do when your mum is unable to walk? Will she have a full time carer or need residential care? If she is to be cared for at home she will need a wet room on the same floor she will be sleeping on if she is to continue having showers. My husband was able to used a stair lift for 2 years before he had a hospital bed downstairs but the professionals don’t recommended stair lifts for those living with PSP. They would have installed a lift, demolishing our new wardrobes but that would have been useless in the future when he could no longer use the bath. We turned our garage into a wet room/toilet and he was able to shower daily until two weeks before he died. Moving downstairs also meant we could go out nearly to the end using hoists, electric wheelchair and adapted vehicle, after lowering the French doors and using a portable ramp. Another suggestion by the OT was to put a 10ft ramp in as the step was originally 10 inches high. The professionals aren’t always right and they don’t have to live in the house so do what is good for those who do have to.
I know you will get lots of suggestions and help from all the lovely folk on this site. I would not have survived without them.
NannaB
XxxX
Welcome to the site. Getting paperwork in place and thinking of what changes can be made to the home are good places to start. I'd get rid of anything on the floor that could pose a trip hazard, loose rugs, etc. If you'd give us a brief idea of your mom's symptoms to date, we can give you better advice on what things you can look at doing to help her and you.
Ron
Hi Muvs, welcome to the forum, but sorry you have had to. You have set out a good list do yes, take one at a time. To add to your list, I would suggest that you do lots of things with your mum while she is still able to manage and make lots of lovely memories to treasure. Are there places she would like to visit, things she would like to do? One more thing, just take a day at a time. Good luck. Lots of love Nanny857xx
Welcome to a group no one wants to belong to.
These are things that may help you if have not already done so.
Please get your health directive in order,DNR ( yes or no) peg feeding ( yes or no) any and all financial matters dealt with.
Do your research,do ask here or use the search bar on this psp site,so many knowledge people here with first hand experience.
Try to stay ahead of this disease, meaning that if your low income look for resources that may help with,shower chairs, wheelchair, hospital bed and even a shower and or location of sleeping area if you are in a two level home.
Muvs , this is such a good place for support, information and friendship. Don't ever get to the stage when you feel stranded and alone. By hunting through old posts you can learn so much...and even smile or giggle with those who are still able to put on those rose-tinted spectacles at times! We laugh, cry, pray and scream with each other here.
And we will join with you in the journey, if and when you wish. Take a day at a time, is my advice and savour the time you have. Don't dwell on the upsets of yesterday, but rather press on into the Joy's and hope that today can bring.
Juliet.x
Hi
Like everyone else. Welcome
Sounds like most of the paperwork you have in hand. You don’t make mention of whether your dad is still around as a carer
On thing we have found since dad’s diagnosis is that by getting his Gp on board and a decent Social worker we have been able to access a lot of things. Albeit with endless phone calls and even some arguments with those who seem to think PSP is just Parkinson under another name
Get as much information as you can before speaking to the professionals as in my experience you almost end up educating them as to the condition
I found that the first time is to make sure the house is as fall safe as possible. Like others have said remove rugs make loads of space for walkers etc Look at everything your mum does and remove anything that’s unnecessary!
Simple things like handrails wherever there is a wobble point !! We got dad a riser recliner chair which has made a huge difference to getting from sitting to standing safely Well worth asking
Get physios in place Speech language too. Get to GP to contact district nurse to as they are the ones that can action certain procedures later on in the process.
As others said we don’t know how far your mum is down the PSP road.
Just remember it’s not a lonely road to travel We are all on it
Take care
Caz x
Glad you've found us but sorry you had to.
One to add to the list but can normally be back dated is council tax reduction, so no hurry. Remember once you have registered as disabled you can claim VAT back on adaptations to the house (such as a wet room) and also many items to support from walkers to drinking cups.
What are your Mum's symptoms at the moment? How does she cope? Does she have carers? Is there someone at home?
Hi, thanks for the feedback. Mum has previously had a stroke which had affected her speech. However it has recently got much worse (we now know due to PSP), Mum uses a white board to communicate words she cannot get out, but even that is difficult. She is getting around with a shuffle, but topples backwards. Her eyesight is poor and when she blinks her eyelids get stuck in the down position for a few minutes at a time until the message gets through to open them. She is very apathetic and they are looking at medication to help with that. I had not even heard of PSP ten days ago so it's been a sharp learning curve. My Dad is around, but he is in his 80's and is struggling with loosing his life long partner to chat with. I live 125 miles away and work so have been trying to juggle both areas of my life. With the diagnosis we are all having to re-evaluate our thoughts for the future and how we are going to manage. Dad is reluctant to move nearer me as he loves his home, but is coming to terms with it is not practical for Mum. I'm wondering how to fit everything in and still enjoy the fun stuff with them. Someone suggested a to do list and just take it one task at a time. No idea on how we access care in the future, still waiting for the letter to arrive at the GPs with the diagnosis, then guess we talk to them about next steps.
I would suggest getting carers in to help your Dad cope with your Mum. They probably won't like the idea but they both need to look after themselves. Mum started having people in twice a week for showering, then after a fall in which she broke her wrist it was every morning & evening, she now has 4 care calls a day. If you can get a care company that can organise a small pool of carers to come in they do become almost like friends to all of you and they will alert you if things start to deteriorate and more help is needed, mine have organised OT visits for me and always let me know if Mum is a bit off colour. This should give you some reassurance living so far away.
It's a big decision to move. Mum was on her own 200 miles away from me and really didn't want to move but eventually agreed and in hindsight it was too late as she was unable to make friends where she now is as she wasn't mobile enough to get out on her own & now like your Mum struggles to talk. Think about what you want in a move. My Mum is in sheltered housing, which has been great when she's had a fall as there is a duty manager on 24 hours a day and they go & check up on her & call an ambulance if necessary. But they don't provide any care and some of the staff are a bit snooty towards carers, which really annoys me. Think about whether you might need a separate bedroom for a live in carer at some point - I didn't & so if Mum does need 24 hour care, we will need to do it with night sitters, rather than live in, which will be much more expensive.
It can feel overwhelming but this forum can help - throw questions out, you will get plenty of different opinions & ideas that will help you make better informed decisions for your particular circumstances.
Good luck & remember we are here
Hi Muvs!
I'm sorry PSP has entered your family.
The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.
I am not a phisicyan. The information I am sending you through this private mail is a compilation of our own experiences with PSP after 7,5 years and of the people who participate in the PSP chat.
Hug and luck.
Luis
Hi Muvs, I found our Hospice are nurse an immense help with a lot of the administration. Our District Matron was a star in helping to kick start the CHC funding process and coordinating the support (OT, physio, SALT etc). We live in Devon and are well served with caring agencies. My wife is completely incapacitated and needs double handed care but she is still with us and knows what is going on but cannot communicate. You have to prepare for a similar outcome and get care in place because PSP affects the carer as much as the patient.
I'm new here. Where do I start...? Help! 
Rosemary
Wheelchair 
