My name is Mary Whelan. My husband has recently been diagnosed with PSP. Devasting.
Psp: My name is Mary Whelan. My husband has... - PSP Association
Psp
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Trillo
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Hi Mary sorry to hear your news how far into PSP do you think your husband is?? My partner has been at it for 10 years now x
Not sure, but definitely seen signs 3 to 4 years ago, now looking back. How progressed i's your husband, and how old I's he.. only new to this, so it's good to see how other people chatting about this. My husband is 63 and I'm 65.
My partner is 66 and I am 48. He gets around on a Sara Stedy indoors and a wheelchair outdoors he is still able to have a normal diet but does cough and splutter alot . He goes during the week for a day at a care home for day care and they keep him till 7pm which is great although they dont get him to the loo on time so he ends up wetting himself. x
Hello Mary
I'm very sorry to hear about your husband
Tell us more about you both
This is a wonderful site with a world of information and the dearest kindest people
X
My husband mick has only recently been diagnosed with this terrible illness, so all very new to us and all our family.we r here in Ireland, and not a lot is known about it, so feel a bit lost as to where to start. We are going to UK (surrey) on Wed for our 40th wedding anniversary , which has been booked along time ago, in fact 40 years married today, as I said very new to this site and the whole thing, I'm 65 in Sept and my husband 63 there in may. Thank you Mary
Mary
40 years how wonderful! Congratulations!
Where abouts in Surrey? I live in Surrey and would be happy to come and meet you and give you loads of advice, well everything I know lol, which is of course not everything about Psp!! But I do know a lot thanks to this forum!
X
Happy Anniversary Mary and Mick! 🎉👏🍸
So sorry about your husband's diagnosis but glad you've found this wonderful site. My husband was diagnosed in 2013 but, with the benefit of hindsight, showed symptoms several years before that. He has deteriorated relatively quickly and has been permanently in a wheelchair for over a year. He has almost completely lost his voice now. We have carers who come in three times a day to help with personal care. We live in a bungalow and he has a hospital bed and wet room. He enjoys sitting in the garden in the sun when the weather is good and still enjoys his food, although has to be fed and have a soft diet.
We are in UK (Kent) and I am not sure what help and support is available in Ireland but I would recommend telephoning the PSPA help line for advice.
In the meantime enjoy your trip to Surrey and have a wonderful anniversary celebration.
Vicki x
Hi Mary, Welcome,( sorry wrong word, but there is no other!) to the best site on the Web. We are all Carers, like me, or sufferers of this evil disease. Everyone uses this site to get advise from people who really know about this illness. I am afraid, you will struggle to find anyone who knows about PSP, from the professionals downwards. It's up to you to teach them, along the way! This is extremely hard, but we will help!
We also come on here to rant and rave about our lives. You can say exactly what you are feeling, nobody will judge, all to busy feeling the same. PSP is a lonely world, but now you are not alone, you have just found a huge family that will support you, comfort you, most of all listen to your concerns and worries. It is a world wide site, so somebody is always on here, great if you are awake at silly o'clock worrying!!!!
It's great to hear that you are going to celebrate your 40th wedding anniversary by going away. Make sure you do loads more of this. Life has not ended, just changed. You have to as well, be as positive as it is humanly possible to do so, take each day as it comes, don't worry about tomorrow, today will have enough challenges!
Sending big hug and lots of love
Heady
I think it's only the wonderful people on this site who have helped me keep my sanity the last 8months, I ask advice, tell them when I'm not coping anymore and share my problems, don't feel like I contribute much at the moment as most others seem to have more knowledge than me, when I joined this site in December I said he was early stages, now he has his food finely chopped and needs help to eat,dress etc and can just about shuffle around indoors, nobody professional tells you that's how it's going to be
Love
Debbie x
Hi Mary, my husband was diagnosed Aug 2014 but in hindsight was showing early signs about 18/24 months previously. He is 66 and I am 65 and we live in Northern Ireland, not much known about PSP here either.
This is a brilliant site, I think of it as my extended family. They have a wealth of experience and provide information/advice and loads of warmth and comfort when needed. I would also suggest you contact the PSP Association and they will send you their leaflets and fact cards which you can give to those you come in contact with that may need them. My GP and Optician were very pleased to receive them. Also find out if there is a PSP support group near you, the Association will be able to advise.
Lots of love
Nanny857 xx
Mary welcome to our family, my husband was diagnosed in 2014 he is in a wheelchair all the time, soft diet , coughing all the time, but we can only take one day at the time, have a lovely time on your anniversary trip, enjoy Yvonne xxxx🍷🍷🍷🍷
Oh God already in a wheelchair, I suppose it affect everyone different. How r you coping after 2 yrs. It's a good site and people a very nice on here.
I won't pretend it is hard, some days you feel like just packing a case a disappearing, but these lovely people on the site, help you through the bad times. Today was extra hard, George kept calling me, he must of called me 20 times in the space of 1 hour, I felt like screaming, he did not want anything, careers came in so I disappeared into the garden, to recharge myself, it worked, came back in and took him into the garden while I did a bit of tidying up, so he could watch me, did the job, and he calmed down. I get really worried when he is agitated, because it is usually sign of a urine infection, I just hope it is not again. We have been married 48 years, all our plans have gone out the window , but this horrible PSP can't take our memories away, have to hold on to them xxxxx
It's a very testing time, isn't it.hope I get the strength and help I need. Are you on your own at night. That must be tough.x
We get chc people coming in through out the day, at the begin in it is so overwhelming, but you get use to it really fast, so grateful having help xxxx
Hello, Mary. Welcome.
My husband was diagnosed Nov. 2013 just before his 80th birthday, although he had had problems for a while.We had a big party organised, immediately after a trip to Costa Rica. My first thought was to cancel but I didn't. We had a wonderful holiday and the party was so special. It made precious memories to hold and meant he saw all the important people in his life.
So enjoy the day.
Chris is still shuffling around. can eat with minimal choking, food cut small. Can talk quietly most of the time. I need to help him or he falls. I help him dress etc. Some incontinence problems. Wheelchair for longer journeys.
This site will support you but it is devastating news and I am sorry.
Love, Jean x
Thanks Jean, we have a trip planned also end of Sept, so hope he will be OK. In London on Wed for 1 week with our daughters. Are you getting much help.
We have a neurological team who have provided us with practical aides. I have had counselling at a support group. I can manage him at present. The most important thing for me is having a break from him. Every Monday he goes to the local hospice for 5 hours. I also arrange privately for someone to come in once a week for 4 hours. Friends sometimes sit with him.
The hospice is really good. Recommend it. Get counselling if you can even if all you do is cry !! I did !
love, Jean x
Hello from America....We are all so blessed to have this site. I can't offer too much as my Joe has CBD. However, I can reassure you that you will find everything you need right here! Just ask and you shall receive! You will make friends on your new journey that will last forever. All I pray for is to have the courage and patience so many exemplify here.
Wishing you peace and love....
easterncedar in reply to
How are you doing, noteasyrc? I have been thinking about you lately. You have such a hard situation. Are you getting any help?
Thanks very much
hi mary
congrats on ur anniversary and welcome to the site
;lol jill
[psp person in england[
xxx
Hi mary
Welcome to this site, i dont often post but i read all the time. My hubby gerry has PSP. He is getting worse but i drag him about with me as much as my energy will allow. I am drivibg to ireland with him this week for 3 weeks. Its like a military operation. Sis in law travelling with us and staying a week, son and daughter coming for another week and lastly sister flying over for last week and home in car with us. Our friend is getting the loan of a hospital bed for gerry while we there, lol only in ireland. Gerry has had PSP for about 6 years, since he had prostate cancer. Look after yourself and vent your spleen on this site. Nobody judges. All the best and happy anniversary to you both. Marie
Thanks Marine, trying to gather a's much info as possible.
Hi Mary, I wouldn't worry about gathering or should I say remembering to much info. Each person is different, each symptom, can arrive at different times for individuals. S, although has the starey eyes, that's the only trouble he has with them. Yet eye trouble is huge with PSP. For some swallowing goes early, for others, right at the end. Your husband will have his own time scale. Just salt away the main problems, so you know what to look for and can react quickly. The rest, well we ain't going anywhere. I am sure you are already beginning to realise how quickly someone can advise you on a possible problem!
Lots of love
Heady
Dear Trillo,
My husband 67 years old noticed something at 61 and retired at 62. Misdiagnosed with Parkinsons first at 63 and PSP at 64. So it's been awhile.
Stay strong, you'll need to, but WE ALL are here for you. This group has been my lifeline, I can't express my appreciation for all of them.
Cuttercat
Hi Mary! Happy anniversary 
Get as many trips in now as you can, while he is still fairly mobile! My dad has PSP. He just turned 67, has been diagnosed for a couple of years, but had signs for a couple of years prior to that. My mom is his main carer, and we are working on ways now to be of more help to both of them. It definitely is a labor intensive thing, emotionally and physically, to be the main caregiver. I've only been on this site a short time, but it has been a real blessing, although you are going to read some things that will be really eye opening and also sad sometimes to know the general direction this road is going to ultimately take. So, again, make sure to get in lots of laughs and fun now!
Sarah
Hi Mary, firstly Happy Anniversary and secondly a sad but warm welcome to this site. It has helped me tremendously both with PSP information and support, don't know how I would have coped without it. My husband Ben was diagnosed almost 2 yrs ago at the age of 62 but had symptoms a good 18 months or more before that. He has just had a fall and broken his hip and been in hospital for almost 6 weeks now. Not sure when he will be out but he will now be sleeping downstairs and the integral garage is about to be converted into a wet room and utility room, work starts Monday.
Have a lovely trip to celebrate your 40th, we went to Tanzania on safari and then Zanzibar for a week of chilling for ours, just before Ben was diagnosed. Had a fabulous holiday but Ben definitely wasn't himself when we went. Get out and about as much as possible and enjoy yourselves whilst the going is good.
Love Kate xx
Ah thanks Kate.that sounds an amazing trip, good that you done it then, we have a trip booked 9months ago with the family for Vegas end of Sept . Hope he will be OK for that.
Hello Mary. My husband was only diagnosed in April, age 68. But first symptom - unexplained falls - at least 4 years previously. I would say he is in early stage, still mobile, talking, choking on food and drinks, but everything very very slowly. He seems to be deteriorating mentally more than anything. Short term memory affected but not too bad but he can't plan - for example can't cook a meal as he just can't work out when different items need to be started etc., misreads instructions on packs, leaves wrappers on in oven etc.
Most obvious mental difficulty is with phone. He gave me a very garbled message yesterday. When I rang back the number in the phone I was surprised to find it was about something and someone entirely different from what he'd told me. We find it best to joke about these things and he's well up for that fortunately.
Like you, I would like more than anything to know how quickly he is going to progress. It seems to be quicker recently. The main thing is you realise that it will only get worse so continue to do as much as you can while you can. This is going to be the BEST part of it so get out there and enjoy. Our restrictions are beginning due to occasional bowel incontinence which has occurred much earlier than expected but everyone's story/progression is different.
Just get on with all those enjoyable things which will be invaluable memories when things get harder. Good luck with it all. This site will help you I'm sure, as it does me.
Lots of love
Rosemary
Hey Mary, Andrea Birke here. I usually greet the new people on the block with long words of history and "wisdom". After reading everybody elses posts, I'd say the wisdom has been pretty well covered! So I will sum up by welcoming you to about the only good thing with PSP; this site!
My history is that my husband B, was diagnosed in March of '13.He is PEG fed as of 12/15. The beginning, before diagnosis, he was stumbling and falling like a tree.....(I thought he was having ministrokes); Lost his visual acuity, ability to write, and well standing and walking without falling all within a year or two of each other. Now sitting is his activity of choice, no talking and wheelchair bound..especially when we go somewhere. He seems to be sort of accepting of what's happening. When we talk about his future...(i've done a paltry job of it) again he is accepting.
When you go to London, be sure to ask them about the future. There are forms and decisions that are not easy to deal with. But once certain things are in place, the future is more...do-able (can't think of a better word)
I try to give my fellow carers a bit of spiritual strength form the Bible. I hope these words can be used and give you comfort. Welcome to our site, we are hear for you.
AVB
Though I walk in the midst of trouble, you will revive me; you shall stretch forth your hand against the wrath of my enemy , and your right hand shall save me
Psalm 138:7
Let us therefore come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in the time of need.
Hebrews 4:16
Thank you for those kind words.very much appreciated, hopefully will get a bit more info whilst I'm there.this site is new as is psp to me, but very informative. X
Hi Mary, sorry about your hubby having been diagnosed with PSP, all progress in different ways so slow some faster than others with all not having same symptoms, it's a weird disease, but this is such a wonderful site at times it's just to read everyone's views so helpful and kind of eases your heart at times you can cry, shout be angrily or happy we all understand and feel the same. Welcome aboard. Nettie
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