my mother has a diagnosis of PSP. It is slowly progressing. She has a carer living with her. I am in London, UK, and cannot go back and live there. I am so torn, guilty and heartbroken. In italy people and doctors don't seem to know much about PSP. Her neurologist specialises in Parkinson's disease and considers PSP a branch of Parkinson. I would like to understand what to expect in the next stage of the illness. She finds it difficult to swallow at times; she eats food of one consistency only and LOVES eating. I cannot imagine her not being able to enjoy the only thing that she still enjoys. I would have preferred that she had a diet eliminating gluten and dairy but there is not much I can do from faraway. My sister and brother are around but they are both very busy themselves, so she has a carer who is lovely. She cannot walk by herself, and has been refusing to use the wheel chair. The worst thing is her change of personaliy. She has no empathy and is very depressed. She can be very mean and paranoid. I lost my father 2 years ago. It's all so painful! If anyone can help me navigate this site and get some useful and simple information that I can translate for my family and carer that would be amazing. I feel for each one of you with a family member with PSP. What a horrific illness )o:
Here two weeks ago with her great gran child
Written by
Zibo
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Welcome Zibo. Your story is heartbreaking! Sadly, it is not an unusual story here.
You will find this a wonderful, caring site! You will make friends from all over the world, who understand all you are going through now, and the difficulties you are likely to face in the future.
The search function by the smiley face will help you find posts and information on your burning questions. Click on the name or smiley face at the top of my response and you will find my history.
There is also a wealth of up-to- date medical info and research projects available and someone will no doubt post a direct link if you ask.
General advice that we all advocate is to visit as frequently as you can, make precious memories, make a bucket list and attack it with vigour while you can!
There are many things you can do with your mum in a wheelchair! Once she realises how that can open doors and solve problems, she may embrace the experience!
My husband resisted the wheels vigorously! When we travelled to UK, I booked one for the flights. He refused the first, but then needed it at the next transfer. It made the trip much more manageable.
Big hug!
Jen xxx
Dear Zibo, this is a lovely photo of you mom & her great grandchild. My mom had PSP & did not like her wheel chair. My mom also had no empathy. She could be a real hateful person at times... l realized it was the PSP.
It is good that your mom has a carer living with her.
If I were you l would gather useful information concerning PSP from this forum & share it with your siblings and her carer. Not sure if the doctor would appreciate a copy but maybe.
It is normal to feel heartbroken when you discover your loved one has PSP. My heart goes out to you as dealing with guilt of any kind is miserable. Do what you can for your mom from a distance and try not to feel guilty. Sending gentle hugs to you & your mom... Granni B
Welcome to the site. It's good you have in a place a decent carer there. If possible one of your siblings should look into getting Power of Attorney and Healthcare. Then talk to your mom about her wishes. There is a good possibility in the future she won't be able to make her wishes known. Does she choke on foods, liquids or both? Getting a wheelchair, even if not used now, will be of help.
I endorse the above comments. One suggestion is if you are buying a wheelchair to get one that has extension bars at the back of the chair which make it impossible for the chair to tip backwards. My husband liked to push backwards against furniture to tilt the chair and had several backward falls out of the chair. We had to purchase a second chair with this feature. Problem solved.
Always sad, Zibo, to hear of another having to join this site but you will find a wealth of information here, more than you will probably get from your mum's medical team, and there will always be someone on here to answer a specific question or just offer support.
It must be so hard for you trying to keep track on your mum remotely but with Face Time and Skype these days I am sure you can look in on her that way as often as you like. Good to hear that she has a good carer so that is at least one less worry.
PSP is definitely not a one size fits all disease and symptoms can be unique to each individual, some will get most of the listed symptoms, some not all and not necessarily in any particular order. It really is a game of watch and see. There are ways of treating some of the symptoms and if your mum is not already on something for depression then maybe that might be helpful. Sadly, at the moment there is no cure nor indeed anything to slow it up but I believe there are trials going on all over the world so one day there will be some good news I am sure.
As hard as it is, maybe it's time to have a chat with your mum re her wishes, especially around having a feeding tube should that become necessary.
One thing I would say re your concerns about her diet, PSP slowly chips away at the sufferer taking away the person you once knew, as you are already aware. If your mum loves certain foods then why not let her have the things she likes and can still manage if it gives her pleasure. PSP cannot be reversed, all new symptoms are the result of the death of more brain cells. Symptoms can plateau for a long time and then a downward spiral can be rapid.
Keep popping in to the site with your concerns and fears, there's always someone here, worldwide, happy to support.
I am deeply touched but each of your comment and care. Thanks so much. At work today but reading and taking in every drop of information. I am grateful
During the 7 years in which we lived with PSP I have been collecting our own experiences and that of other members of the chat to offer this notes as a suggestion to patients and caregivers.
I am not a phisicyan. My studies have a relationship with Physics, Chemistry and the Environment. The information about our experiences with PSP is made with good will and my best technical criteria that I have been able to contribute, thinking above all in guiding caregivers who have, exception made of PSP associations chats and their support, to face this unknown disease.
Wishing the best for you and your family and if the document with our experiences and our solutions can be useful, do not hesitate to let me know to send it by private mail through this chat.
good morning Luis. Thank you for taking the time to visit, read and comment. I am very grateful and interested in receiving your observations. I have no idea how to find your email address: can you share how to, please? Is this document not sharable here? Wonder how many people may also be interested?
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