Younger psp sufferers !!

[SharonAndPaul]

My husband is 55 and has been suffering from psp for almost 3 years - he is now in the advanced stages. Because he is younger and we still have children at home - I haven't found anybody to speak with who is experiencing similar concerns - anybody we have met have been older. Is anyone else in this situation?

[easterncedar]

I am very sorry to hear of your sad situation. Your husband is so young. There have been others on this site as young or younger and with children at home, but not very recently.. I hope one of them sees your post and comes forward now. Meanwhile, welcome. Wishing you comfort in this awful time. Ec

[Katiebow]

My husband Ben is 64 and still in relatively early stages although he has declined considerably in the last 6 months. It must be very tough to still have children still at home seeing their dad and mum in this situation. We have two sons both living 180 miles away, both in their early thirties and I know they find it difficult to deal with seeing their dad becoming more and more disabled. I hope you get a response from someone in a similar situation as yourselves as it helps to share your thoughts and fears. Keep posting as it a tremendous help to share with people who understand what you are going through.

Take care,

Kate x

[Heady]

How sad for you all. As EC has said, there are others with young children around. Depending on the actually age of your children, you may find, they actually cope better than older kids. S's children are in their 40's and cope by burrowing their heads in the sand and don't come and see him! To yours, it's just how Daddy is, as sad as that sounds. I do suggest you try and find counselling for them and yourself, while you are at it. PSP is a lonely old world and we all need support.

Lots of love

Heady

[Kevin_1]

Hi

Maybe, my Liz was 54 when she had her first symptoms in 2012.

I retired early to look after her and fortunately for us we have enough pensions and no mortgage so we are getting by financially.

I am so relieved, in a perverse way, that I am dealing with this now and not in my 70's.

I am in awe of how older people cope with things I think I would find too much.

Crucially too, we have no children. So in another sense we are in a different space to you.

[Nanny857]

Hi Sharon, I really feel for you and your children and that this awful disease has affected your family while your husband is still so young. I felt life had given us a raw deal when W was diagnosed at 64 but after reading your post you have made me realise just how lucky we were to have got that far. Hopefully someone will answer who is in a similar situation. Much love, Nanny857

[Patriciapmr]

Hi and welcome to this site although I'm sorry you have the need to!

I agree with what the others have said, younger children do seem to deal with it better than the older ones, our grandchildren are very protective towards Keith, they look at photos taken a few years ago and say things like "Is that before Grandad was an old man? I wish he was like that now!"

I'm sure there will be others on this site in a similar situation who will be able to help you but if you think we can help you with anything please ask, take care....

Pat xx

[LynnO]

Welcome to this site. My husband is 58, started showing symptoms about 5 years ago, but just found 2 neurologists who figured things out about a year ago. Our youngest child is 25, so none at home. How old are your children? I think like a couple of people have said, usually younger children handle things like this better. We have 3 and each are handling their dad's disease in their own way. But thankfully all are understanding and helpful, especially my oldest son. Even if you don't hear from anyone with children at home ,keep reading this site, it will be helpful in other ways too.

Stay strong!

LynnO

[alibid]

Hi Sharon,

I've been on this site because a friend of mine was diagnosed 18 months ago at the age of 38 - he's now approaching 40. He has a 16/17 year old son. We live in the UK and like you found most people are at a different stage of life and facing different issues, so we went to meet Keith Swankie who was a similarly young age when he started to have symptoms, although he wasn't diagnosed until 3 years in, so had all sorts of issues from not knowing what he suffered from. He and his family have done a lot to raise awareness and if you google him you should find a video that they made. He's still in his 40s.

Where in the world are you? Let me know if you want any more contact - we certainly found it helpful meeting Keith and his family - I think they are sometimes on here too so may respond and be more use than me.

It's certainly a harrowing journey, but things like this site and support groups are brilliant, and there are some amazing carers out there happy to share.

Alison

[SharonAndPaul in reply to alibid]

Alison,

Thank you for your reply - I will certainly look up Keith. We live near Rugby in Warwickshire.

It just would be so nice to have somebody to communicate with who is facing similar situations to us. Paul's illness has developed quickly - he is in a wheelchair, can see very little, we have to feed him (and are in the process of deciding whether to have a peg fitted), has a supra pubic catheter, and struggles to communicate - so the challenges are definitely there !

Sharon x

[alibid in reply to SharonAndPaul]

Hi Sharon,

I've sent you a message with my details, haven't tried it before, but hopefully it works. Elaine sounds a great person to meet up with really close by too.

Alison

[alibid]

I've just seen you're in the UK, but can't tell whereabouts. We're I Shropshire and Keith is in Arbroath. I'm away until the 17th, but let me know if you'd like to chat anytime.

[Elaine1969]

Hi Sharon my husband is 53 and I have children at home hard work trying to be mum and carer at the same time xx

[SharonAndPaul in reply to Elaine1969]

Hi Elaine, crickey it sounds like you really are in a similar situation to us - where do you live?

I have taken a carer break from work to stay at home and be my husbands carer as he now really can't be left alone for any period of time.

[Elaine1969 in reply to SharonAndPaul]

Hi Sharon I live in Birmingham my children are aged from 27 -17 17 and 18 year olds have adhd and asp with Aspergers xx

[Amilazy]

Try contacting PSPA main office in Towcester they may have local group for you to meet others, agree many will be older but many have experience with children. I must admit M started symptoms only in her late 50's, and now in late stages at 65 and both our boys were in their late 20's when PSP started to affect M.

I was 15, eldest of 7 in 1965, when my dad was brain damaged in a motorbike accident. Mum took charge as always and allocated care as required I helped look after my 6 siblings, learned to cook, laundry, shop etc and studied for my O and A levels while mum coped with a bed ridden man and a new born. It was hard but we all coped with Dad's condition in different ways only one rebbelled and his 2 sisters took him under their wing. All I remember now is that on the whole we looked after each other and helped mum while not understanding what actually was wrong with dad. I assume your children are in teens hopefully they will cope and though not fully understanding of what is wrong. Try seeing if there is a young carers group near you, your local social services may be able to help to find them or the carers trust.

Best wishes Tim

[ketchupman]

My wife is only 54 and has had PSP for at least 7-8 years. She became totally dependent on me about 5 years ago. Our children are now 32 and 34, so I wouldn't consider them young. Very mean disease and doesn't seem to discriminate on age/sex/race/nationality.

God bless you.

Ketchupman

[aicebeall in reply to ketchupman]

hi ketchupman, i am 66 and live in santa rosa, ca. have daughter almost 30 and husband who is 68 have house in marshshall, ca. where are you?

thanks, alice

[ketchupman in reply to aicebeall]

I'm 56 and my wife is 54. We live in Louisville, KY. Home of the Kentucky Derby, the Louisville Slugger, KFC, and the late Muhammed Ali.

[aicebeall in reply to ketchupman]

hi, know sokething about loisville. good to hear from you, thanks, alice

[Tokki]

Hello and sorry you have had to find this site. I cannot offer any advice as we do not have children but you will find a lot of support and advice/tips etc on this site. Best wishes.

[aicebeall]

ui you i agree with everypne. take care. alice

[abirke]

How are you and husband?

AVB

[abirke]

forgive me if there was other information...I could not find it?

[Pagesofwords]

SharonandPaul: I am so sorry to hear about your husband's PSP and you both with children at home. This is very hard to deal with. I can relate to your situation. My sister is 51 and was diagnosed with PSP on August 19, 2016. She had been quite ill for three years at that time but didn't have a clear diagnosis. She now walks with a walker. She has chronic pelvic pain (for over 3 years) that doesn't allow her to sit in a chair. She is mostly lying on her side in bed all day long except when she goes to an appointment. She can put laundry in and out of the washer and dryer and fold it. She gets up for meals but doesn't cook. Her husband is 56, and the children are now 20 and 17. I am the older sister who lives 10 blocks away. I do what I can to fill in and help. My grief is profound but I try to be upbeat for the family and to not upset my sister. I attend a caregiver support group twice a month in my community, which is helpful to me. It is a place I go and cry and everyone understands and supports. My nephew feels unparented for over two years. My niece is angry, in emotional pain, and acting out. She sees a therapist. My brother-in-law hurts but doesn't know how to express it or seek support. He is away on a two-week cruise with his mother right now. My 88-year-old mother came to stay at their house and help me with my sister. My nephew focuses on college classes and keeps very busy, seeming to ignore the stress at home. A grief counselor told me the family is in denial. My sister's cognitive and personality changes are painful to me. I feel I've lost my baby sister. We were once so close. I don't know--does she remember how we once were? Her emotions and thinking seem strange now. And limited conversation. How old are your children? How is your support system? Our church helps with meals, transportation, and prayers. My sister has several doctors, therapists, a pastor, and a lay minister (Stephen minister), who all support her with visits/appointments. I am especially sorry for how hard it is to face this disease with children at home. May God bless you and hold you close. --Pagesof words