Saying hello after 18 months

[lindy21]

Hi everyone, this is my first post after joining 18 months ago,my husband George was diagnosed around February 2015 but believe he has had this illness for 3 years but it seems hard to tell. Its nice to be able to read how others deal with this horrible illness day to day and that I'm not the only one. We live pretty rural and are a bit isolated so this site gives me lots of information about PSP without having to ask doctors etc who don't seem to know much about it anyway.I look forward to reading posts after I have got George into bed, just to feel in touch with others who are going through the same things that we are .

[Heady]

Hi Lindy, I too, have just put my husband to bed. This now me time. Even the dog has to go to bed, leaving me alone. Although I dip in and out of this site during the day, I do treasure my five minutes of reading posts. To know that I am not on my own, in this misery that we call PSP.

Glad you have decided to Join us by posting. We all need each, no matter what part of the journey our loved ones are at. I am sure S has had this evil disease for at least 20 years now. Although obviously symptoms started 6 years ago, diagnosed 2013. At first they were put down to him having a stroke.

Please keep posting, love to know more about you and your husband. Feel free to rant and rave, we all do, as no doubt you know, as you have been following us for a while. We are here to help, support each other, give advice, let's face it, there is nowhere else to get any proper support. Medics know nothing about this disease, or in my case, can't even be bothered to find out

You are not alone, now you have reached out, you have just inherited a worldwide family that has your back!

Lots of love

Heady

[NannaB]

Welcome Lindy, I can't add to what Heady has said. Well done for taking the plunge and posting.

X

[easterncedar]

Welcome, Lindy. I'm in a fairly unpopulated spot, too, which I generally love. Our little city has a good medical community, so my guy is well taken care of, but there's not much support for me, and I rely on this site for information and advice and sharing and sympathy. I have never been let down. If you have been reading for a while, I guess you know all that. Anytime you feel like telling us more about yourself and your husband, please do. Where you live, what you do, how you are managing the day to day...

Til then, love and peace, Easterncedar

[abirke]

Greetings Lindy! My husband Bruce was diagnosed in March of 2013 but was showing signs in 2011 or so...I do not know if his was a rapid or a slow decline but a decline it has been. I do know that might need for ya'll on this sight has grown in proportion to his need for me in PSP. You are so right that this place will help you find answer and as much as possible provide you with as much support as we can conjur up.. We all share the same kind of needs. We want so hard for today to be somehow better than yesterday ...Evne if that only means that we have come to better terms with our loved ones ultimate destiny.....and well , getting some sleep is nice....Like Heady and EC and Nannab have said, you are not alone; welcome aboard. tell us; ask us; scream at us... that is what we are hear for...and if you are a praying person, don't forget to to ask God for comfort for He is there for you as well...

Sincerely,

AVB

God is our refuge and strength, a very present help in trouble... Psalm 46:1

...Therefore Lindy:

Commit thy works unto the Lord, and thy thoughts shall be established. Proverbs 16:1

[Duffers]

Hi lindy. Welcome back to this great community. Everyone on here is so helpful and knowledgeable about practically any symptom. Just ask and there's always someone who has experienced that very thing. When you're down they can help lift you up again to face another day. Keep posting. Take care. Marie

[Satt2015]

Welcome Lindy and I'm very sorry to hear about George! You'll find now that you've posted once you'll become addicted and realise that you've now find some great friends that will answer you day or night. Anything you want to know ask, and anytime you want to rant or scream do so!! How old is George and how he is currently? How are you and how are you managing? X

[loppylugs5]

Welcome to the site,but sorry you needed to find us.I found an uncanny fact that when my PSP husband had a problem someone else had that exact same problem and then others had advice.

This week I heard from someone with 27years in care/social work who had not heard of PSP til we spoke.this is why we need this forum,

Treat yourself kindly, cook your favourites,if your George has gone off a glass of wine and you fancy one go ahead even carers are people!

Love Px

[Spiralsparkle]

Hello 👋

Nice to meet you but sad under the circumstances. I love this forum and it has helped me massively since Mum was diagnosed with CBD earlier this year but has had symptoms since 2011/2012.

Look forward to seeing more posts x

[Hidden]

Hi and welcome. My Joe diagnosed with CBD in 2014. It is one year since he does not recognize me as his wife. We are together 55 years. We reside in NYC. This site is a blessing and you will find peace here. The unknown is what is so disturbing....

God Bless,

Rita

[Hidden in reply to Hidden]

Hi Rita - Your reply to Lindy touched a spot in my heart. My husband has Parkinson's but also dementia. He is at the point that he is with us more than not aware but I can see it is getting worse. Today he asked where his Mother was....she died 25 years ago. Parkinson's is sad enough but this dementia is devastating. How do you handle it? I'm not sure I'm doing the right thing. Do I agree with him or correct him. I do both.

I read once that 20% of Parkinson's people develop dementia.

[Millie1218]

Hi Lindy

Welcome to this fantastic site where you will make many friends and gain so much information about PSP. My dad was diagnosed earlier this year but we've been told has had it for 2 or more years. I came upon this site by luck really as I was trying to find some information about the disease. I struck gold when I found this site, it has helped no end. I read the posts daily When I feel stressed the posts calm me, when i'm sad they cheer me and some of the posts have made had me in stitches. You will find help when you need it and strength to carry on. Take care Lindy and stay in touch. xx

[1941mary]

Welcome Lindy , we are all here for you! Love to you xx

[Yvonneandgeorge in reply to 1941mary]

Welcome Lindy welcome to the family, not a nice illness but as Heady said we are all here for everyone, it as also been my life line, George was diagnosed in 2014 but we think it started in about 2010, sending you a big hug, keep posting xx Yvonne xxx

[doglington]

Welcome, Lindy.

My husband has PSP, diagnosed 2013 as he reached 80.

This site is a great support. We all really know how it is and, although no-one can change what is happening, it helps to know they are there, not judging.

love, Jean x

[Sophiejo]

Welcome Lindy to this welcoming , supportive and informative site .

My mum who is 75 was diagnosed with PSP in July 2015 but believe she has had it for a lot longer . At first it was a slow journey but in August this year she got worse and it seems to of speeded up things seem to change daily

Sending you and your family a hug

Sophie Xxx

[1812blackdog]

Hi Lindy I am fairly new to site and tend to read posts nearly every day. It's interesting people mention about some people think of stroke we had new carer on Monday who said when she saw my wife for the first time she thought that she had had a stroke I have cards which are about size of a bank card but gives information about the condition and signs what to look i.e. Backward falls speech and eyes not able to handle ultra violet light need for dark glasses I always gave a one to a new carer so they can understand some of the problems to look for particularly falls and they always thank me say they have never heard of PSP I got the cards from PSPA

[Katiebow]

Welcome to this site Lindy, I'm sure you will find it invaluable as most of us have. It is a wealth of information, advice and support and I find it such a comfort to share my woes and worries with folk who have been through or are going through this horrible journey. I hope you also find it the same. There are also clips of the lighter side of this disease that will undoubtedly make you chuckle.

Love Kate xxx

[Marie_14]

Lindy, I have only been on here for about a week. It might even be less? I am losing track of time. Just like my poor husband!

Everyone seems so kind on here and knows, so much. I am feeling lost to be honest. Please excuse me for hijacking your post but not sure what to do now.

My husband was diagnosed with a very rare form of Leukaemia 2 years ago. We were trying to come to terms with that when I noticed his walking was odd. I managed to have him referred to a neurologist despite his Haematologist telling me "what did I expect, he has Leukaemia"! I also got him a second opinion regarding the Leukaemia. He was given a different tablet and responded well. Now I kick myself for doing it as he would probably have died from the Leukaemia by now?

It's not even a year since he was told he had either MSA or PSP but the doctor thought the latter. However that is not a proper diagnosis? He is not due to see the Neurologist until December. It will have been 11 months since he last saw him.

I have no date for this however! Just his secretary told me on the phone months ago.

People ask me who is caring for him and I have to tell them nobody, as the GP has only seen him 4 times in that time and she hasn't a clue! Now because he is in the Care Home none of the GP's at the practise will go there as it's too far for them!

They changed the times of his Sinemet when he was in hospital. He gets one at 8am one at 12pm and one at 6pm! The last one is a waste of time. I didn't think they were working but maybe they were slowing it?

When he ended up in hospital he was in the Stroke Ward because I don't think they knew where to put him. They were even treating him as a stroke patient!

Today I went to see him at the Care Home where he is meant to be for respite but he is getting worse by the day. Nobody knows what is wrong with him. They just don't understand PSP. He lies in bed all the tine although I have managed to encourage him to sit out for a few hours most days.

When I went into the room today he started to cry. He asked me what I had done on our Wedding Anniversary! It is not until the 19th! He has no idea what day it is when I go to see him. This has only happened in two weeks. Nobody talks to him so why would he know? His speech has almost gone and his breathing is so bad. He hasn't been out of bed for the past two days. He was so upset to think I hadn't gone to visit him on our Anniversary. I have told him I will spend the day with him and have lunch with him. What he doesn't know is our 2 children and 2 grandchildren are coming later and we are having a buffet and cake. The Care Home are decorating a room for us with banners and balloons. He will probably sob his heart out and then forget it all a day or two later. It is our 50th Anniversary but not how we thought we would spend it.

Feeling very low as I just don't know what to do. He has made it clear he wants a DNR but we haven't got one in place because he has no doctor visit him. I am getting desperate as I don't know how to get this for him. Never even discussed PEG feeding as he didn't want to know what might happen in the future. I think that is getting close now as he struggles to drink and now struggles to eat! They keep telling me he is only that way when I am there! That's just not true! They don't look to see what is happening and he won't ask for help or complain about anything.

Neither of my kids are helping to get the room clear so we can get a hospital bed in for him. I have nobody else who can help. So called friends have vanished. Only got a couple who take me to visit him as I don't drive. Please if anyone has any suggestions can you let me know?

Marie_14

[Tttp]

Hi Lindy yes this is a great site and oh yes PSP is a terrible illness it's a new adventure everyday something new what they could do a month ago they can't do today, very disheartening to say the least, I find after reading comments that the loved one effected with PSP had problems a couple years prior to being diagnosed my brother time came 2013 and I saw things in him that were not right but it was so Sutlel that I did'nt give it much thought until he was diagnosed can you remember some of those changes? And yes some doctors don't know much about PSP in fact some have never heard it before but I am totally amazed of some problems like PSP that are just as terrible as PSP. Take care. Nettie