This horrible psp

[Yvonneandgeorge]

I just wanted to ask you all about the feelings that I am feeling, I feel like part of me has died, we had gone to Cyprus on holiday and George was very poorly, my brother lives in Cyprus and he took us to a private hospital, the doctor there did tests and said he thought it was psp, felt so bad so for George he did not want to accept it, did not know much about psp, the children were in London, broke the news to them, and could not wait to come home.

The doctor in Cyprus had been working at queen's square and he said when you go home ask your doctor to send you there. As soon as we arrived home the girls had got us an appointment and we went to see the doctor, we had only just moved up to Bishops Stortford, the doctor was a bit off when we said we had been to see a private doctor in Cyprus, he said why did you waste your money, I said the doctor we saw charged us 50 euros, and he spent over an hour with us, and for the first time in all the years that we had an answer to George's illness, he seemed to change his attitude after that and looked up psp on his computer, while we were there, he even wrote the letter while we were in his room, saying I will more than likely get into trouble spending so much time with you, we had found a good doctor unfortunately he was only their temporary. Our old doctors I had been telling them for years that George was not well, with the coughing, inappropriate laughing but they said it was the medication, so god how's how long he has had this horrible PSP.

Well as I have already said the hospital in London said it was psp, so our worse fears were confirmed, I think being with George every day you don't realise things change so much, until someone comes to visit and they say how different he looks etc.

We have been married for 46 years and we should be enjoying our retirement but that is not to be, George does not want to do anything, he does not want to get up, he does not want me to shower him, he does not want to socialise with anyone, he just wants to sit on his chair watching tv playing with the remote control.

I was with my daughters today and they wanted too arrange something for my birthday I will be 65 told them I did not want a fuss, they were fine with it, but I can't shift this feeling that I have had since we went to the hospital at the beginning of January.

We have always worked hard brought up 3 lovely children and have 4 beautiful grandchildren, just think life is so unfair, I know we have to take one day at a time, but it is so hard.

George does not want to accept he has psp, he tells everyone he is getting better, I am not winging just feeling sad that's all I suppose. I am more than likely tired, I have to sort out everything for a long time now, so I am use to it, but there is this feeling that I can't shake off.

Sorry to go on but I felt a bit down today.

You are all amazing people love to read the different stories I look forward to the have a lovely evening and a good week end.

Yvonne xxxxxxxxxxxx

[peterjones]

hi Yvonne well im sorry that you find yourself in this position mate i should try for a good neurologist to get hes opinion now and if it is the bad news then I should get things in place now don't wait around I should stay on this site because you will get a lot of valuable in information as to what steps to take etc how is your husband doing at this time is he falling backwards or has hes speech got a bit slurry or slow how is he generally it will be hard going for a good while for you and your family\\ I would look up psp on your computer and try and take everything in which is nigh impossible but you can gather some information on there \\ you sound very much like most of us on here mate with your husband doing most things for you and now you find yourself with all the extra responsability as well as what you used to do before well we go one day at a time and I advise you to do the same when you have settled down with the idea of what your husband has I will not ramble on anymore mate I think this will be more than you wanted to hear anyway good luck with everything to you and your husband take care peter jones queensland Australia psp sufferer

[cabbagecottage in reply to peterjones]

go on stamp your feet it isn't fair is it . I'll join you lol

[blackcushion]

Hi Yvonne I feel your pain lost my wonderful mum last June diagnosed in the October which was all so quick my brothers and I cared for mum in her home and I was with mum right up till the end of mum's journey still brakes my heart what mum went through. Donations and a Cardiff marathon my brother,daughter and boyfriend did raised so far £2000 pound for psp, and they are in the psp association magazine my mum would be so proud . Thinking of you all its a hard journey xx

[NannaB]

Hi Yvonne, I am so sorry you are feeling as you do. I'm sure we have all been there, I certainly have. My husband finally let me shower him when he fell in the bath where the shower is. Our garage was being converted to a wet room at the time so until it was finished not long after, I got in the shower with him. He didn't object to that! When the wet room was completed he wanted me to continue showering with him and quite honestly it was far less worrying for me. We did laugh when told him not to fall over and pull me with him as I wouldn't want to be rescued by paramedics, I'd never get over the embarrassment. After a while I had to get a chair for him to sit on and now I have carers to shower him but there are still occasions during the day when he needs a shower so I go in with him then. Got to keep that spark alive somehow?.

Can you still leave your husband on his own for a while? Do you have sitters in? One of the things that keeps me sane is that I still have a life outside PSP. I have 2 sitters a week and my husband goes to the Hospice day centre once a week. I have made lots of new friends since PSP by joining the U3A. Most towns and many villages in the UK have a group. They have monthly meetings which we both go to and ours has 45 different interest groups. On Thursday I had 12 ukulele players here. I think it is important to speak to people about things other than PSP. It also gives me something to speak to Colin about. Whenever I've been out without him I tell him who has sent their love, who said what etc.

Today I was going to the cinema and our son was going to sit with his dad but it's snowing now. Last Friday I invited 4 friends round for an Indian takeaway. They brought the food with them and we ate and chatted where Colin could hear. He rarely speaks but he laughed at things that were said even though he looked asleep. We also included him in the conversation and he put his thumb up and down when appropriate.

Prior to PSP I didn't do much on my own, I worked full time and in our spare time we did things together so it was an effort to take the plunge and get out there and do something but I realised that if I didn't want PSP to totally take over our lives, I was the only one who could find ways of improving things.

I will be 64 in March, have 3 children and 3 grandchildren and should also be enjoying our retirement, but we are not dead yet so I want to make whatever time we have left as bearable and memorable as possible.

I hope you have a good weekend. I think, by the look of the white stuff outside, it will be a sitting by the fire, TV on and knitting the jumper I started a year ago for my grandson ( I started it 2 sizes bigger than required as I knew how long it would take).

Sending you a big hug and hoping that cloud soon lifts.

X

[cabbagecottage in reply to NannaB]

you sound so much like me Nanna lol . yes agree try and get out for even the shortest time . like you I found it so difficult to be on my own in company . luckily we have both been members of a club where we were also both trustees of so everyone has been very supportive . in fact I had intense to go last night just for two hours . someone picks me up and another person brings me back him half way through the evening . they are so very kind and I accept it with the grace given .

I come back refreshed even though still feeling guilty whe he has lost the Tv programmes he wanted . he cannot manage the remote anymore .

I am in the process now of getting sitters along with the carers night and morning . he doesn't want them really but he and I bothneed them .

it's not that I want to get away from him but I need to get away from Parkinsons for a couple of hours .

unlike Colin , John finds it hard with. Too many others around it scrambles his head .

[Heady]

Hi Yvonne, NannaB is right, we have ALL been where you are at the moment. That doesn't make it any easier for you, I know, but please take some comfort that you come out the other side. Or at least part of the way. I think half of me accepts, is positive, trying to keep our life on an even keel, the other half, in the depths of dispair, frightened for the future. You do get use feeling like this, crazy as that sounds.

Your main problem sounds like your husband is very depressed by his illness. Is he going to Physio? This is a huge MUST!!!! While he is still upright. Get your consultant or GP to refer him to a Neuro Physio. They should have heard about PSP, but take the leaflets from the PSPA with you, just in case!

I understand totally, how you are feeling, S and I have been together for 25 years, we have worked, rested and played for all of that time. Rarely apart for more than a couple of hours. So the thought of having to do things by myself is frightening to say the least! But I WILL cope, don't know how, but it will happen, because there is no other choice!

Lots of love

Heady

[nomansland]

Yvonne...Madeline was diag,ed in 2008 but had been on the voyage since her initial unexplained falls in early 2005,her symptoms were much like your husband,s are now.,I worked to close our business the last 6 mths in 2008 as I took care of her at home,I had 20 employees who took full advantage and made thousands of dollars go missing,all people don,t feel one,s pain ! This voyage is a lonely one with people who I thought of as friends,including her 3 sisters ,drop off the radar very soon yet people you forgot or had not seen in many years come forward,thank God for them and to me God has become my daily partner in this new lifestyle.Yvonne it is a liveable journey ,for now try to prevent falls and other things that will come up along the way,if we can help please let me know,Rollie

[zjillian]

I agree with all of the above answers. You are not alone. This is a wonderful group of people. Keep reading the posts and writing when you feel like it. You have already done all the right things. Sometimes it helps me to write down my feelings and describe how my husband is doing. I'm 68 and my husband is 72. He has had PSP at least 7-8 years and I could not convince his doctors at first that he was sick. He does not acknowledge that he has PSP..so don't worry about accepting diagnosis. You know and that is enough.

Hugs,

Jill

Costa Rica

[Doglinton]

I can't add to what others have said regarding advice. I was in your position a year ago and am more accepting now but just as much of a roller coaster emotionally. I can only say how 17 years ago our first grandchild was born with Downs Syndrome and we were all devastated. It was described as suddenly being in a different country with no way back. That is also the situation with this diagnosis. There is nothing we can do to change the situation so we have to make the best of it. The main thing I tell myself is it will get worse so we must make the best of now . Not a cheery prospect !!! We still have good times. Like nannaB many laughs about the problems but it is never like it was and thats the bad bit. Chris can still be left so I have a life, although diminishing. We have had support from friends and family, although so far I haven't asked for anything. That will be a test. I worry about the future and being alone. We all share these dreads.

Hugs, Jean

[Springm]

Hello

As I read your post I was amazed at how similar our stories are. George and I were married for 46 years -- into the prime of our retirement. He died this past year after 10 years of illness. He had a personality change and became unsocial as you described. We didn't get a solid diagnosis until 5-6 years into his illness-- all the major symptoms had to come out before anyone would say what it was--- PSP but I knew there were serious problems. George seemed to be oblivious to much of it. The early years were the most frustrating because we didn't know what we were dealing with. I felt he wasn't trying hard enough to deal with his symptoms but the disease robbed him of his problem solving abilities.

We live in Canada. Eventually the last four years of George's life was spent in a Nursing Home and I visited every day. I marvel at those who have their loved ones at home and are their chief caregivers. George's condition and symptoms made that impossible for us. It was a long hard journey but I'm so thankful for excellent help and a strong faith that carried us through. My heart goes out to you --- you will get through it! Take each day and enjoy it and don't let your other interests go. Keep as normal as possible, including your husband as much as you can just by telling him the business of the day. That keeps him "in the loop" and feeling as positive as possible. Don't forget to count your blessings daily --that will be hard some days!

God bless you!

Mary

[Yvonneandgeorge in reply to Springm]

Thank you all for your lovely replies I really appreciate your comments I do try to get out most days while George is in bed, and he is at the centre 2 days a week, so I try to get some me time but time goes so quick. But thank you all once again have a nice weekend what is left of it Yvonne xxxxxx

[Heady]

Hi Yvonne,

Sorry I got interrupted earlier.

Your birthday, of course your daughters should arrange something for your birthday. You must have a huge celebration, doing what ever you enjoy doing most! I have just had my 60th. Christmas Eve, so you can imagine I don't get many parties. This year though, I decided, it must be celebrated. I thought 60 different ones would fit the bill!!! My sister, daughter and their partners joined us in South Africa and we had several different jollies. As long as Champagne was around it was counted. For my actually birthday we had a BBQ, with all the family. Thankfully the British weather played ball! Every "do" was relatively small, well planned, to avoid stress and something that S could be part of, (when invited!). OK, S just sat and watched or even slept, but I, you know, ME, had a brilliant time. S really enjoyed it as well, for once, we were normal people again! Yes, he was exhausted at the end and took a while to recover. But I think we would both say it was worth it.

YOUR life can't be ruled by PSP! YOU must be able to enjoy life, even if it's only for a few hours. Your daughters need know that you haven't given up, just because their father has this evil disease. The more normal you can keep life, the easier it will be for George to accept his illness.

So get your daughters to book the party, go out and buy yourself a new frock and ENJOY,!!!

Lots of love

Heady

[rookiecarer]

You're not winging. You're just human. It took me a while to realise that. My thoughts are with you and I'm wishing you well. Love. L.

[MaddyS]

Hi Yvonne

Sorry to hear that you are in the same boat as all of us here.

You are grieving for the loss of life as it was. I only understood these feelings correctly after hubby died. I miss him so much but am not in 'mourning'. Do not know how to describe this, I'm sure we all grieve more before our loved one actually dies.

Take care, maddy

[jimandsharynp]

I experienced a few of those "down days" myself. I have to say that my wife who was confirmed at autopsy to have PSP didn't have many of the symptoms others report. Just blessed I guess. Didn't have any apathy at all. Accepted the outcome and lived one day at a time. Never worried about "stages" as we both knew that was a waste of time since PSP is not a one-size-fits-all disease and every patient is different to some extent. Hang in there and be prepared for some "down days" in the future but remember, each day is a new chance to do your best for George and yourself. Jimbo