I am new here.

[Servena03]

I am carer for my husband diagnosed 2012 with PSP although we feel he had it a few years prior, I was too scared at first to read your comments page, but now things have progressed I now feel I need to know how much more to expect, I don't know when I should call the doctor, or plod on, he now sleeps 12hrs solid, he can not do anything for himself, can get rattie and can't hold a conversation, he struggles with back pain in his wheelchair after a hour just shopping, he has so many problems, I am scared of what's next, and can I cope, although I have a wonderful family, I am 76 and John 82, fortunately we live in a independent social care home. Before I was so strong but now feel as though I'm whinging, especially after reading your comments.

[Marie_14]

You certainly aren't whinging! You have done amazingly well as he was diagnosed in 2012. So you have been an amazing carer.

Things sadly do get worse as things progress. Do you have any carers to help you? If not you need some. You are almost certainly entitled to CHC funding but it is really hard to get it. It seems to depend on where you live but it shouldn't, it's meant to be the same everywhere! Have you got any family who can help you fight the powers that be? There is lots of information on the site about what you need to do.

Anytime you want to have a rant you can do it here. The same with having a cry!

Have you been in contact with the Hospice? They can guide you in the right direction.

Come back to us and ask us whatever you want. We don't bite and there are some really kind people on here. You have done so well but need some support now.

Sad to have to welcome you but you will get so much support from here.

Marie x x

[Servena03 in reply to Marie_14]

Bless you, your remarks are most welcome, don't feel quite so selfish. Why and how do I go about contacting a hospice, I have an appointment with our Parkinson's specialist tomorrow, my grand daughter will be with us, she feels she wants to ask more questions about what's happening, he seems to develop something new weekly, last week dizziness with neck pain, this week a lot of coughing, he is wonderful and let's us do anything for him.

You sound as though you have been through a lot but very strong.

Thank you so much xx

[Marie_14 in reply to Servena03]

Hello again! Well you could start by asking the Parkinson's specialist? Is it a nurse or doctor?

Ask him/her for the name of your nearest Hospice. Hopefully it's near. They are usually good with Palliative Care and support for families as well as patients.

I am glad your Granddaughter is going with you tomorrow. Tell her to take notes of what is said. Also for her to write down any questions any of you might have. It is so easy to forget them. You should really be seeing a PSP specialist (neurologist) if your husband has being diagnosed with that.

Tell us all how things go tomorrow? All the best to you both and your lovely Granddaughter.

Marie x

[Dadshelper]

I am glad you decided to post. You'll find lots of info here plus really helpful people who are or have gone through various stages/symptoms.

I am not 100% sure what an independent social care home is. I am guessing it may have some type of round the clock staff for emergencies? If there is a staff or level of management maybe you can discuss getting your husband into a skilled nursing home setting.

Definitely ask at next doc appt about your options for extra help or medical equipment you may need.

Ron

[Kaylewis]

Hi does John have any painkillers to help him with his back, u could get a pain review from the doctor.

[PDDJED]

Hi,

[Servena03]

Thank you all for your replies, yes where we live has 24hr care, for which were so grateful, he has welfare in mornings to wash and dress him, and night to put him to bed, I handle everything else. The Parkinson's doctor we visit handles PS P as well, I have a long list of questions for her as I feel John is deteriorating, will let you know the outcome. Me and my family are so happy with all the help we have received, the occupational therapist has given us so much equipment, this week a turning platform to get him from chair to whatever. Anxiety will kick in next week for him as I have to have a operation on my leg, others will step in for two weeks. I can imagine you all relate to the same situations.

Thank you for listening xx

[Motts]

Good Morning Servena

It so lovely that your granddaughter is going with you and your husband.

I am glad you posted. Everyone on this site is so helpful and caring.

Hope all goes well at the doctor's appointment. Might I suggest sharing this site with your granddaughter - there is lots to learn here.

Sending you all Hugs - Granni B

[PDDJED]

Hi you have done well to join this forum as it sounds like you are being a wonderful carer and support for your husband and I am so sorry to hear it has been so difficult. When it’s all happening to you it’s sometimes hard to see the way forward as you are dealing with so many issues day to day. The bigger picture can get lost! My father was diagnosed roughly the same time as your husband.2013. He is about to turn 80. He was diagnosed with Parkinson’s first but it became more obvious that it was PSP although the diagnosis of PSP came through only 2 years ago after many falls including one where he broke his hip. It was PSP from the start though. My mother is 77 and his main cared but already has full time nursing for my father because it has become way too much for her. He has a lot of equipment and we are currently looking for a hoist as his movement is deteriorating. It took a while for my mother to put her hand up to ask for help. I guess you could say we had to positively encourage her to do it. However what we have found is that once she had taken the step to get him into a new situation with nursing it took the pressure off and they could enjoy what good times he can manage together. Even though the changes may be big and heartbreaking it’s for the better. We have found we have to be ahead of the curve with every downward deterioration and don’t worry about taking those steps ahead of time because it’s more comfortable to have a safety net than not! She has her own health to think about and in caring for my father put herself at risk. I hope I am not sounding too gloomy here and your situation may be completely different but I thought it may help to hear about my parents. At least you know you are not alone when you join this website and we are all very sympathetic.

[Cuttercat]

You are in good company with all these caring people here. I agree with all the previous posts and hope you will continue to ask for guidance. Everyone here is very helpful. My husband passed away but we are still here to offer you our support

Cuttercat

[Servena03]

We had a 1.5hr consultation with the PSP specialist and was able to cover all new issues, feltso good to talk to someone with the answeres, but every issue was diagnosed as symptoms of PSP and unfortunately there are no other medications to help, but they are issuing him with patches for pain. Stiffness is the new issue causing lack of use in his hands, and will get the OT to offer roll balls for his palms to stop them curling up, also so coughing and swallowing

. My situation is so similar to yours, PDDJED, I have only just reluctantly given in to welfare help for the last month, realising it takes two of them, and don't feel guilt anymore only relief, my children have been nagging me for a year to accept help, worrying for me as much as their dad. It's the not knowing what's next and how long does this go on for, I suppose every case is different.

Thank you all for your replies and understanding, must admit I looked forward to reading them all. Perhaps I will be able to help others too, who are at different stages with this awful disease.

Congratulations and well done to the gent who done the North run, that was a great distance we watched it live, we done a 5k wheelchair walk this year with John and all my family, it felt so good and uplifting to know we raised money but most of all awareness, were starting to think of what we can do next year, won't be able to do the walk.

Thank you all xx

[raincitygirl]

Dear Servena,

Hello and Welcome

As others have suggested above, there is no one answer to the question: "What will happen next?" If you read through the historic post strings here (use the search PSP Association window in the upper right corner of your screen-) you will find so many POSSIBLE symptoms and so many POSSIBLE routes for the disease to go. However...sometimes what you think will happen - does not! Case in point: I would read about the progression of the disease with some individual, then compare that to my husband and think "Well, hubby is younger than him...so this won't happen soon" or "Well, hubby is pretty healthy and can still walk a little, and he can eat - so I think he has at least 3 or more years left" Then suddenly a seizure and he dies. So - you just never know.

Pace yourself, take care of yourself, and as hard as it is, be grateful that the man you committed your life to, is still with you - no matter how "reduced" the relationship and life is. Giving love to another so close to you, is the greatest feeling in life.

Hugs, and keep in touch! XX

Anne G.