Hi,
My mom was diagnosed with PSP about a year ago now, and I cannot believe how fast the progression has been. She is so young, and my little brother is only 11. I’m in university away from home and it’s been so hard. I don’t know how to navigate this at all, and I feel like no one around me understands what I’m going through. It’s so hard to see my mom go from the strong-willed woman she was to now. I guess I’m just wondering how did to get through this.
Roxontopp, I am so so sorry to hear this news. We understand and can be here for you online. x
Hi, I'm so sorry to hear this. Do tell us you're location... UK or other and area. That way others on here can offer more specific info abd advice, signposting etc BW
Hi, i’m in the US.
Hi Rixontpp, I'm in the UK and we have the PSPAa charity with resources, helpline and support, you can always look at their website as theres much useful and informative information that may be helpful for you. I believe in the USA you have similar CurePSP. If you haven't already, it would be worth looking at their website and contacting them to see what support and guidance they may be able to offer. I wonder too, as yoyr at University, whether it may be worth you speaking with student support to see if they may be able to provide you with some support or guidance on where you may get additional help, suppirt tobset up resources and care support for you mum as time moves on and needs arise. Additionally when you have specific questions post them on here. If you're seeking general advice about symptoms, equipment, what to do and when so many people have experience on this site and can offer their thoughts and anyone from any of us around the world can respond and help but if you have questions about more specific services, equipment, care and support more specific to your country or geographical area do include this in your question and people closer will try and respond if there are here. If you just want to share, rant, feel supported we're here too. Take care
Dear roxontpp,
I am so sorry to hear about you mom's illness. It sounds like she has been affected at a very young age, and as you say progression appears to be fast. I wonder what support she has in place so far?
It will undoubtedly affect your brother and I worry that you both could end up with caring responsibilities that you really shouldn't have to deal with at your age.
I've seen my nieces lose their mother to cancer and it was very hard for them - yet she was able to push them to prioritise school / university and to build their own lives.
My son was a teenager when my husband started showing PSP symptoms and it has very clearly affected him in his transition to adult life. I have been careful to shield my son (and my husband's children from a previous marriage) from the heavier parts of dealing with and caring for my husband. Still, my son has seen my struggles and I've not been able to support him as much as I would have liked to during these important years in his life.
Push for outside help early - your family will need that. While both you and your little brother can help out where possible, please don't feel any obligation to put your own lives on hold, I'm sure your mom wouldn't want that. Look after each other.
My heart hurts for you. Be aware of anticipatory grief, and don't ever feel guilty. Spend time with your mom when you can, make memories, have important conversations - record them if you can - and let her know that you will have an amazing life. Don't break yourself trying to "save" her, unfortunately that is beyond anyone's power.
So sorry, I hope you will find all the help you need to get through this hard journey. Hope, hugs and lots of love.
🌻🫂💜🧡
Hi Bergenser!
A lucid and balanced analysis and suggestions. Admirable.
A hug.
Luis
Hi Bergenser, I've just read your reply to roxontpp and wanted to say how wonderful you are ... and saw Luis had beat me to it !
Such wise and empathetic words from a mum to a young girl starting this awful journey and worried just how she's going to cope with her mum's illness and her younger brother.
You have a wealth of knowledge of PSP and you are always there to help and advise others. You have my admiration.
Leosta 🧡
roxontppHi. Please don't worry. That's life. Instead try to take as much care as possible of your mom, taking assistance from all possible resources as you navigate this all. However , First and Foremost point to Implement is that please Don't Let Her Fall, Not even Once during this whole journey. Everyone here on here is helpful to the maximum point. You just need to let's know what are her current problems and how is she being taken care of. Best wishes to you and your mom.
I’m sure you mean well PineEater, but I thnk that is a little harsh. With the best will in the world you probably can’t stop every fall. Roxantpp is away at Univ; your comment may make her feel guilty if her Mum does fall. PSP is a terrible illness, we don’t want it to damage the lives of the family and friends more than absolutely necessary
Hi Roxontpp, yours was a sad read. I feel for you being away from home and hard for your brother. If you are in the UK please phone the PSP Association Helpline (pspassociation.org.uk) and ask to speak to the Care Navigator for the area your home is im. She will be able to talk things through with you and advise on support available locally and what the PSPA can do. They have Link Volunteers who can, if one one in your area, visit your home and signpost your family to the right support. All my very best wishes 🙏
Dear roxontpp,I'm sorry that your mum has been diagnosed with PSP. You are surely very worried about the future. You've had some excellent replies already from people with a wealth of personal knowledge of this disease.
Any time you want to ask a question, however silly it may seem, or you want to just pour out your heart, you can just post on this site and people will be there for you.
Sending you hugs 🤗
Hi Roxontpp
I have been diagnosed with PSP around two years ago and before that I was diagnosed with Parkinsonism that was about three years before I got the diagnosis for the psp so I would say approximately I have this terrible disease around 5 years now and the progression of this disease is ongoing before I had any symptoms of it I would go for a good quick walk around 5-6 miles every day and now I can only manage around 5-6 yards if I try to do anymore I would then fall,usually backwards I have already gotten 10 stitches to my head and I don’t want any more,plus my body aches all over.There’s a whole lot of pain involved in this PSP ,so all I can say to you Roxontpp is give your mum as much support as you can give her a big hug when ever you can,just be there for her .
I’m a PSP sufferer and a mother - although my two are much older. Whatever, I’m sure your mum will want to have as little impact on your and your brother’s lives. Have you been in touch with your local hospice? Mine has been great. They’re one of the few who have even heard of PSP. They offer respite care, not just end of life, and have a social worker; as it happens we have a good relationship with one from the council: who should be able to help with advice re finances, outside care, etc. I hope this helps and wish you good luck
my grandma had PSP. it was really hard at first, but i found that even though she was regressing, she still had her amazing spirit. times may be hard, but they will get better. cherish the little moments, celebrate the small victories, and hold onto the love that never fades. even in the hardest times, there’s still joy to be found.
Hi, there are a number of support groups on Facebook that also have a USA focus, they may help with practical advice. One in particular Progressive Supranuclear Palsy. It’s a good place to seek advice and support. Xx
Hi Roxontpp,
My heart goes out to you. We're in a similar situation, in that my husband has PSP, and our kids are near your ages.
Some specific advice--you can almost always get a certain amount of free counseling sessions through your university in the US, and get them a lot more quickly. Please, please, use them. Don't underplay the stress you are under when you first contact your university's counseling center, so that they get you in for the rest of this school year. Taking care of yourself, and getting some solid support, will be the best way you can also help your little brother and your mom. If there are any support groups on campus for students with critical health situations in the family, try to find them. (I'm not sure why cancer support seems so much better in place.) If you have a professor or R.A. or anyone who knows you well, ask them for how to find support. I cannot tell you how much it helps to have people who are going through a similar thing--they get it.
In addition, if people back home ask how they can help, have really specific answers ready. . . is it rides to the doctor that are most needed? meals dropped off (be specific about what your brother will actually eat) help around the house? If your family doesn't have some form of community, it's okay to contact any group that exists to serve--like a house of worship, or even a community organization like rotary club or lions etc. The counselor at your brother's school might have ideas of organizations that can help out in practical ways.
Wishing you all the best! You will feel overwhelmed at times, but there are people out there who care and will walk with you.
-Lost
I feel you, roxontpp. Seeing someone you love besieged by this disease is brutal. My eldest daughter was your age when her father was in his final stages of PSP. She was also at Uni while her younger sister was at home with us, having to see the grim day to day care of her father. Both of my daughters would relate to your feeling of no one understanding what you are going through. It is unimaginable for those who have not had to experience seeing a loved-one slowly dismantled. If you are interested, I am sure my daughter, the one in University, would be willing to chat with you (probably via email )and offer some solidarity. In the meantime, it's important to get some support, either professional or by opening up to your friends. Try to take care of yourself. Your mother would want that first and foremost.
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