Hi, I’m not sure if anyone is still using this site as I have noticed posts were 4 years ago but I am desperate to talk to people that have had a loved one with PSP. My mum was diagnosed about 4 years ago with Parkinson’s and about a month ago Mum was admitted to hospital and the neurologist looked straight at her and said you don’t have Parkinson’s you have PSP.
I am now trying to get my ahead around this awful disease. Mum is in rehab at the moment she had good days and bad. Mum is vey stary and very softly spoken, she at times needs assistance eating but can not be alone to walk shower or anything.
Rehab have advised Mum needs 24x7 care and that it will be to hard for me cause within months Mum will get dramatically worse.
I would love to chat to anyone that has been through this before
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Kezzamum
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Welcome and sorry you found the site. Yes it's a very active site, people post from all over the planet here about themselves or loved ones struggling with these diseases.
Feel free to ask anything, someone will reply normally in short order.
I am so devastated to see my mum go through this. Mum still has her mind and is fully aware of what is going on around her.
I am really struggling with knowing I am only going to have my mum for maybe a short time but I have also been advised by drs etc that Mum needs 24x7 care. I’m not sure how far we are in this journey
Welcome Kezzamum. This forum is very active and I promise it will be a great resource with tons of information. What I love about the forum the most is the tremendous amount of emotional support. Everyone here knows what you’re going through and I find it comforting to know I am not alone. My 75 yr old dad was diagnosed with PSP 6 months ago.
Hi, for something so rare I am so sorry you are all experiencing this with your loved one. I have tried being with my mum in hospitals and rehab for the last 5 weeks I have not wanted to leave her side as I feel I’m clinging on to every last clear moment I have with her.
The information for professionals is really worth a read. Also we have found it useful to print out appropriate sections and hand it to that professional if they have little previous experience of PSP. A lot more professionals are aware of PSP these days (Thanks to PSP Assoc.) however you will meet many who don't know a lot. We have found it very important to stress that it's not like Alzheimer's and, in many cases, the person still has capacity to think and make decisions.
They have a telephone advice line too and it's very good. They are building up a system of 'reps.' in each locale. You may already have one in your area and they too are very good for advice and support.
Your Mum may not get dramatically worse over a few mere months. Sometimes it is years. The time frame is a little different for everyone. Do be cautious about information given to you if it is not from a specialist in PSP. For many the illness goes in steps. A sudden step down in functioning followed by a plateau. Often after a step down there is a slight improvement over a week or so., but the trend is always down.
If your Mum is in hospital and you are in the UK ask for a Continuing Health Care assessment. This will trigger a whole raft of services getting involved and, hopefully, free funding for all of her needs from the NHS. If they say no just come back here and folk will advise on how to push for it. It is often a struggle to get it, but it is so worthwhile.
So welcome to this warm a friendly forum. There is a lot of experience here from many parts of the world. So many times I find my answers here.
Hi Kevin I am in Australia. Mum was diagnosed only 4-5weeks ago after being told it was Parkinson’s. Once they stopped some of the Parkinson’s medication and cleared up a urine infection Mum appeared to get stronger with doing Physio. Mum even started being able to feed herself again and stronger getting in and out of bed. Other than the last 2 days where mums stare is back bad and extremely softly spoken I was starting to think the drs had it wrong. I was told in a family meeting 2 weeks ago By the specialist, physio and social worker than Mum will get worse within 3-6months being wheelchair bound that the spike in her looking a bit better was just due to them stopping some of the medication. I want to be there for my mum I am even trying to move my family to a disabled friendly house but keep getting told this won’t be for long.
I’m scared for my mum and confused. My dad went into hospital 2 weeks ago with pancreatic cancer which they removed his spleen and pancreas so I am now the decision maker I don’t even have my dad to talk to about this as he is so sick after his surgery
Kezzamum was your Mother diagnosed with PD just recently or a few years ago? If a few years ago and it has just be changed to PSP then it makes sense that you have been told you are now going to need care 24/7. It could also be because of your Dad. There is no way you will be able to care for both of them. Your Dad is in hospital at present but I am sure you visit him?
Your Mum will want to see him and if you currently have a wheelchair you may be able to cope. If not someone will have to take care of her while you go to see your Dad. This is truly an awful situation for all of you. My heart goes out to you.
Please stay in touch with us as there will be people who can help you along this road. If you want to let off steam or cry that's OK. We have all done it! It really helps.
Right now I think you need to listen to what you are being told about the care you will need. It seems to me that is right.
I am so sad for you as nobody should have to go through all of this. I hope you have supportive family as you will need them. However you now have another online family where you will get a lot of support, advice, and love.
You have it full on. Both your father and your mother, I'm sorry. Do you have anyone giving you support? As you probably already know being a carer can be exhausting. Please try to make plans for yourself to have breaks and support.
It is so hard to guess the timings of each step down in ability.
The best way with PSP is to plan ahead for the next downturn in terms of care and resources. A hospital bed is a great boon. It can be raised higher than the norm so that your Mum can slip off it almost standing. As she becomes more tired (a symptom of PSP) she can use it to sit up to watch TV for example. Keeping an OT closely involved for advice re. equipment.
Really in terms of 24/7 care. Get them to draw up a Care Plan. Have a read of it and discuss it with them. It will become quickly apparent if that is over the top for her current needs.
Moving to a disabled friendly house is a big step. You might first want to get an OT to assess your Mums likely needs and possible aids to make your current home work. There are folk here with a wealth of experience in this area
All you need to do is describe the situation and ask for ideas.
Hello, I welcome to this site that has helped me to express myself and also has helped me to understand this desease. This is a great conference that clarified some of my doubts and fairs. Hope helps you.
The fact you found a neurologist who recognised PSP straight away is very encouraging. Many people on this site suffered misdiagnosis, also as others have mentioned it is not short term. When my wife was diagnosed with CBD 5 years ago we were told 5 Years now they are saying 8 and who knows in eight years time let's hope and pray they may have found a cure.
Hi . so sorry your Mom has PSP. My husband was first diagnosed with Parkinsons then PSP a few months ago. We think he is about 4 years into it. i am learning so much from this site to help prepare for the future and what is going to be needed etc. Keep in mind, Everyone is different and progress at different rates. I think my husband has the slower progression PSP-P I am in the US but there are people from Down Under on here who will be able to help you out with what is available in Australia regarding care, assistance, etc. You are not alone. When I joined this site, I went back and read old posts which was very helpful. There are people n here who have lost their loved ones but they stay to help and answer questions . It is overwhelming at first but read posts, read the PSP sites info.
xxxxxx
Welcome aboard. Join the journey we are all on. Some are people who have PSP or CBD. The rest are care givers or family members looking for support and information. You will find both here in abundance. This site helps to keep me sane. Check it everyday. Ask any question that comes to mind.
There is a magnifying icon at the top right of the page to enter words you want to research and answers for recent and past years will show up.
There are different types of PSP. One is very fast acting with a 5 year life expectancy the other not so fast with a 7 to 10 year life expectancy. The latter is more opened ended in life expectancy from my experience with Larry. Aside from PSP his health is good so far.
Neurologist really don’t know. They give the information they have. Depending on your mother’s health aside from PSP will make a difference. If she is healthy otherwise she could live a number of years.
Sorry to hear about your dad. Having one parent sick is stressful. Two at once is numbing.
The same thing happened to me when I joined all the posts were from 4 yrs. ago! One by one, tho, everyone showed up~ stay tuned and you find what you need😊
Hi Kezzamum. Welcome to this site! Yes, we are always around 24/7 as the posts come from all over the world. I am across the ditch in NZ.
There are a few others from Oz who have posted recently. You may find one is nearby and you can help each other. Someone was asking about help recently. You should be able to get funding assistance info from medical staff or Parkinson's association may still be of help.
I so feel for you, having to deal with your dad so sick as well. I have a nephew in UK fighting pancreatic cancer. So far he is doing well and still has the organ. Now 2 years and still living well!
Your mum with be worried too, tho she may not be able to show it. Make a big effort to get them both together while they are able to hold hands and communicate. These diseases are always unpredictable! Make the effort for them while you can, even tho it is stressful and exhausting.
There is also something called respite care which you may be able to use at some point if you manage to get either or both home together. Then you can have someone else help them while you go on a spending spree, go to pictures, visit friend, put your head under bedclothes and sleep, whatever floats your boat!
Whatever happens, there are people here who know full well what you are experiencing, and we will be here for you all when you need us.
Hi Kezzamum. I joined the site a few days ago, after my husband, now 72, was diagnosed with PSP. He, too, was diagnosed with Parkinson's 4 years ago. We are expats living in Spain, and the support systems here are a lot more basic, though our lifestyle is simple and as relaxed as we choose. He is still mobile with stick and walker, but quite fragile. His eyes haven't changed yet, though they get tired.
I am his main carer. We have someone coming in for an hour a day to help shower him. Apart from that, we are on our own. Friends from church are very supportive, and our gentle lifestyle takes a lot of anxiety away.
Although your situation is very different, I have already found information and moral support here very comforting and reassuring.
As newbies, I want you to know that I am very happy to share your angst, along what I think is going to be a challenging time. Sorry I can't give you advice....I maybe asking you for some!
Welcome to the community Kezzamum. You have found us! I lost my beloved mum to this horrid disease in 2012 but I still begin each day by reading through the posts. Between us, we have the answers. Buckle up. It's a rough ride, but you will discover resources within yourself that you never knew you had, and will emerge stronger than ever. Best wishes to you and your family. We are here for you.
My Husband Ch has PSP. He is 75, had a mild stroke at 73, tentatively diagnosed with PD at 74, medication did nothing then diagnosed with PSP.
There are many services in Qld but I am not sure what is available in other states.
Contact Centrelink , MY AGED CARE, Commonwealth Carers Respite, (In Qld we also have to have an ACAT assessment to help us find services such as 'Right at Home', Anglicare, OzCare and more through which you can get services for nursing , cleaning... etc) so ask at the rehab or the hospital where your Dad is.
You need a social worker, an Occupational Therapist, a physio - we have also seen Speech pathology , a dietician and psychology - all of whom have been very helpful.
Keep asking until you get some advice to help you out of your confusion. It is very confusing in the beginning. Keep in touch with this forum. I am a carer for Ch. ... Keep your chin up... Val
Unfortunately/fortunately this site is very active. Set your account up to get daily alerts of new posts. You will see that there are 4 to 5 people a week like you who have loved ones that are newly diagnosed, you will read about cries of anguish as this cruel disease takes abilities from our loved ones, and the heartbreaking posts of the last days of loved ones who finally are taken because of CBD/PSP. As you realize there is no way to sugar coat this. Everyone is slightly different, but there are commonalities where others can offer help and support.
24/7assistence is inevitable. It is eithercostly from a financial or personal time standpoint.
So welcome. You are not alone. There are many caring people who will try to help you. I am often a recipient of that care and support
Hi Kezzamum, My husband of 56 yrs also has PSP. He is in a care home now after about 3 1/2 yrs of home care mostly by me. The most important thing right now is to get an OT eval. They are great at addressing current needs and helping you figure out ways to fill those needs.
I'd like to caution you about making drastic changes such as moving. I found that most fixes that I put in place only lasted 6 - 9 mos or so and then his needs changed again. Usually OT's are cognizant of that and won't recommend a lot of elaborate and expensive changes. Grab bars are inexpensive and very effective while your mum is still mobile. That would be a good start if you don't already have them.
The people on this site are here for you, don't hesitate to come here with your questions. I can't imagine trying to care for both of your parents with such serious illnesses. My heart goes out to you.
I am not a doctor but from what I have read the disease you speak presents the symptoms of a type of PSP called "parkinsonisme" (PSP-P) and that in the first years is presented with the symptoms of a classic Parkinson (PD) reacting positively to Levodopa until a time when the typical symptoms of the most frequent PSP (PSP-RD) are taking center stage.
My experience is in PSP-RD.
The life expectancy of the PSP-P patients is significantly higher than for the PSP-RD.
By private and internal mail I send you our experiences with PSP-RD in case you find something useful in them.
Hello, I understand how you feel. My mom is in her 70s as well. She has had this for at least 3 years that we know about. Each day she does seem to get a little bit worse and she now needs constant assistance. Yes, I have notice that some things on this site are old but there is lots of new comments as well.
Hubby is going through this as I have MSA which is even worse and no medication ca n help. After7 years we have both had enough.our retirement was not to be like this,but we can do nothing about it except wait. I’m 64 and had a heart attack at 57- May be connected ,who knows?research projects still ongoing.
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