Hi everyone. I came across the PSP Association online. I have never written on any kind of forum before so this is very new to me.
I wanted to share that my beloved husband Phil has two weeks ago been diagnosed with PSP. He is 41. So very young. We have been in total shock and disbelief. Neither of us know what to say to eachother. We are like zombies! We also have two girls age 10 and 13 ( who aren't aware of the diagnosis yet)
Two years ago i noticed Phil was losing his balance /being unsteady. But as he is a clumsy person i didnt take it too seriously and he denied it anyway.He also seemed to be suffering with fatigue . Last August he had 5 falls. All of which were down stairs, steps and his ladder. I also noticed he had a slight tremor in his left hand. His face seemed to look so stressed and i felt he had a personality change. After a gp visit , 2 mri's and eventually a neurology appointment ( in november 2016) it was felt that he was presenting parkinsons symptoms.It was also noted he had a problem with his vertical gaze. We were asked to observe the symptoms over the following 3 months. By now phil was losing his balance every day - not great seeing as he is an electrician! He was also complaining of the cramp from hell in his hands. They go into claws ( his explanation). And stiff neck. Fatigue seems worse.He has mood swings and is not interested in anything. He has been spilling his food when eating and accidentally urinating on the floor whilst using the toilet. He has also just had a chest infection. He was finally given a diagnosis 2 weeks ago of psp.
My question is. Are there any other psp sufferers on here who are in their 40's? We are completely devastated.
Apologies for my long story!!
Many thanks
Written by
Karibu
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Your story is certainly our story! But my husband is 67. His symptoms started 5 years ago this spring, and he was finally diagnosed last April. This group is very faithful in responding so if there are others with what I will call early onset I'm sure they'll sure. Love to you and your family.
Dear Karibu - I had never reached out to anyone or done anything online really before I found this place and am deeply grateful that I did. I could not have coped without all the advice and support I have received on this site, so, welcome.
41 is very young for this diagnosis, but it is not unheard of, I am sorry to say. All of those symptoms are very familiar. My guy was showing symptoms at 60, and was diagnosed at 64. He is now almost 71.
When the diagnosis was confirmed we went into what felt like an odd period of shock, although it's not odd at all, I have since learned. I sympathize entirely. It is devastating, but especially, I can imagine, at such a young age.
The falls and the chest infections are the most dangerous things. My guy takes a mild antidepressant, which I think helps his mood. We tried all the various parkinson's medications, because sometimes they do work for psp, although rarely. Nothing helped for him. I do think the very high doses, 1800 mgs daily of CoQ10, that he took for some time, may have helped to slow the progression. Expensive, but recommended by his neurologist. It helped to think we were doing something, anyway.
I hope you have a doctor on board whom you trust.
Best wishes. Please, keep in touch. We understand, and, since the community spans the globe. someone is usually awake to reply when you need to share.
Thank you. I have had a lovely long conversation with a lady from the psp association. She has sent me lots of info and was very helpful. We just feel in limbo at the moment. Not fully believing the diagnosis xx
I don't think anyone can believe it at first....it's a truly awful thing to be told, take time in adjusting! All I will say is this, after my dad was diagnosed he came out of the neurologist's room and cried, mum and I said hold on, your no different to how you were 5 minutes ago! Ok so we had no clue at that point about Psp but slowly you adjust, what other choice is there x
wow that so true....I can feel the earth sweptg from underneath your dads feet. Bruce and I didn't really think any harder on it than you do a cold....It was the experiences that knocked me for a blow...B was always stoic and able to meet it with a sort of casualness....By the time we found out I think apathy had its hold....
No apologies necessary. In fact I am sorry for you! 41 could be the youngest. My husband was 52 or so when diagnosed. Kids were just getting out of college etc.
The thing to do now is get out of zombie mode , if you're in the US, get him on disability....and then start taking he and the kids on fun, m,emorable trips. I know he is different and his personality has changed a bit but a few good vacations will be so worth it. You don't recover from PSP so make the best with what you've got .....your girls need to make memories...a family center such as disneyland with dad in a wheelchair....this curbs the falls and reduces his fatigue. When his behavior becomes difficult, well shoot honey I don't have any thing good for that, my husband didn't have that problem....Though anti depressants have been recommended.....Take lots of pictures and have your daughters journal if they are feeling wierd about it all ....even if they are not....making memories will be welcome in the future...This goes for you too....
As for you , you will have a difficult but doable job ahead of you. However you must take nourishemnt from
food...plenty of good stuff with vitamins iron calcium and othe important mnerals
water.....not diet coke.....water.......and as the ladies here say a glass of wine every once in a while! (don't over do that either)
emotional nourishment ..ask for help get some rest and don't get mad at his changing behavior it is PSP not your husband....and you and your daughters go out and do soemthing fun everyonce in a while....and always make a moment in your day PSP free!
Physical...take a yoga class...maybe with your husband learn how to shift him , transfer him, pick him up ....these are things we carers need a class of on this site.....Get enough rest if you are not healthy nor will your family....
Spiritual nourishment...if you are a praying person, do it . Ask Him for the strength and comfort your family will need. Depend on Him to give you a path that you can follow....And when you need a friend and feel like you have none, well will have HIM I promise!
You will also have this site to lean upon....so scream cry ask answer tell us how you're doing we are hear for you.
Good luck with your new endeavor....remember make these early days full of happy memories......
((HUGS))
AVB
And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the Lord’s people. Ephesians 6:18
Be joyful in hope, patient in affliction, faithful in prayer. Romans 12:12
I work as a carer and have done for many years. So I guess at least I have experience.
I am a praying person. I am a christian. I was baptised on this very day March 27th 2016. On Easter Sunday!. I guess He has been equipping me for this difficult path ahead.
Thank you for all being so welcoming and friendly.xx
So sorry to hear about your husband, he is so young, my husband is 70 we think he has had PSP for over 6 years, he was diagnosed is 2014 then again in 2015, enjoy your time together with the children, I agree do fun things while your husband still can. Sending you a big hug Yvonne xxxx
Like you, I don't do things like this site but it really is a life-belt. At times it feels no-one understands but here they do !!
I remember how stunned I was at the diagnosis. It still shocks me at times but we have to go on somehow. My husband was diagnosed just before his 80th birthday. My heart goes out to you as you are both young to have to cope with it all.
We will share tips but the first and most important one for now is to make memories while you can. You will find a way forward and we are all with you.
I also wanted to say that your husband is invited to talk on this site too...There are many friends who have PSP and would be able to talk with him about his own issues. So please encourage him to give us a write!
Bless him Jean! My Dad still can't accept it and bless him often wants to get up and out of bed, he has been in bed since May 4th 16, it's heartbreaking explaining that his legs don't work anymore and he refuses to be hoisted! X
Easily understood....but you don't have to make any occasions to have fun because of PSP.....you just want to go and do this or that...Not that you or he is kept in denial more that you want to spend time with him...."away from PSP"
Karibu my husband has PSP 10 years and is still in denial. This site is my haven no way would he discuss his problems but if he accepts his condition then I know it is much better at least the two of you can talk together. I have never had that his aim all the time is to do things himself and if he achieves that he is delighted but I can tell you mostly falls. Four dislocated shoulders in the last 9 months. I could not stop crying in the beginning it is so hard. You should try and do lots of things as a family at the moment for the girls sake. Please please take care of yourself. Come onto this site Scream Cry and Rant thats what we are hear for and everyone understands. xxxx
Thank you so much. I think one of the reasons why phil is in denial is because we havent received a clinical letter from the neurologist yet to confirm it. Phil wants to see it in black and white first. The neurologist said he would pop all the info regarding the condition and driving assessment etc in the post. But two weeks after disgnosis, we have heard nothing. We feel in limbo. I have phoned secretary four times and each time it goes to answer machine grr! Xx
Oh boy, Karibu and Phil - sounds like you have already gone through the wringer and back again - but welcome to our wonderful website, where I am sure you will soon become aware of what a fantastic, diverse and educated range of people we are - from carers through to people with a diagnosis of PSP - I am still not sure what to call ourselves as I strongly dislike the use of the word sufferer in this context. I am one of "those people" in case you hadn't gathered that!!!!!! and Phil, I suspect that being only 40ish, is just such a young age for a diagnosis - I am 62yrs young, and I felt it to be very unfair when I received my diagnosis (and I am still actively involved in clinical trials associated with PSP).
Anyway, welcome to you both and I am sorry you have need of us!
so sorry to hear this - my dad was about 55 when he started losing his memory but PEP symptoms did not show up till much later, around 70
have you asked the doctor for NPH? it's fluid-in-the-brain which can cause dementia like symptoms - but I am guessing it might not be that since he has the vertical gaze problem
they do a lumbar puncture (spinal tap) to check for NPH, which is very painful itself but unfortunately it also worsens PSP so it's a super high risk or potentially useless, in case the diagnosis is confirmed - but I'm not a doctor so plz ask a doc - BUT do your own research before doing anything major or invasive, I cannot stress this enough, whether it's a spinal tap or PEG tube or tracheotomy - a lot of doctors think academically and the quality of life of the patient is of lesser importance to them
this is a great place for advice and tips, please feel free to ask anything at all, without any hesitence
Welcome , Rog was young when his symptoms began, also a sparky!
No words can convey your feelings, I found sorting out the practicalities helped, the system can be confusing, the association are fab , get them to send you professional packs and give them to everyone, we have to raise awareness, also they know you won't take any messing!
We are way down the road, you will reach acceptance, the disease is progressive but not predictive, everyone has a different journey.
You will have strength you never thought you had, and yes there will be some laughs along the way!
Julie X still in bed as his nibs is still asleep yeah !!!!
So sorry to hear about your husband. Everyone with PSP has different symptoms. There is no pattern. He is very young and with two young children. My husband falls a lot, has swallowing problems and needs botox on his eyelids to keep them open his first symptoms started at about 55 years of age but not diagnosed until 60 years of age. Please keep in touch with this site as we all can understand everything you are going through. You take care of yourself and your two little girls. xxxx Big hug
Welcome to this site you will find some kind of comfort and reassurance here that you don't seem to get elsewhere except the Hospice. 41 is very young to be given the news that he has PSP. Ben, my husband was diagnosed at 62 but displayed symptoms a few years before that and he was in denial for a year after diagnosis. He has now accepted that he has PSP which makes it easier to discuss issues that arise connected with the disease. If you can manage to get to do things/go places with the family I would encourage you to do them asap. I send my little love and support to you and the girls as you face this journey, you will surprise yourself at how much strength you have inside yourself.
I was diagnosed at 49yrs, it was devastating at the time, it will be life-changing over time, but not life-ending. Given the correct medication, your husband's symptoms should diminish, at least initially. Each patients symptoms vary, the degeneration also varies from patient to patient, and it may take a little while to get the prescription right. There are much worse thingd than Parkinson's, but I accept this is relative.
Welcome to the site! It is a wonderful place to get support from the only people who really know. My husband has CBD and he started developing it around the age of 58 which still felt incredibly early so I understand your devastation at such an early onset. He is now 66. Looking at it positively your husband is probably young enough to benefit from all the research they are doing now. Enjoy every activity you can. I give my husband Co enzyme Q10 and I am sure it has helped although there is no medical evidence yet. Citalopram has helped with his mood swings xxx
My Liz's symptoms started at 54 years old and we thought that was early.
I know it probably seems preposterous to say, but there are still many good times still to be had. Its all about adjusting and trying to guess what will be needed as things deteriorate and getting stuff in place in advance if possible.
Caring is very stressful and tiring so get your support organised before you get desperate. We were very slow in doing that and I hit the 'not coping and exhausted zone' quite early on. Even though Liz's needs are much greater now we both cope better.
I cannot even begin to imagine how you will tell your daughters though I expect you know how best to deal with that. I had a neighbour once and the Mum did not tell the eight year old son about his fathers cancer, but sent him to her sisters for a couple of months. When he came home he was very shocked and confused at the state his father was in. If he had known earlier he would have been able to adjust and accept it better.
Anyway, welcome to the forum. I hope you find it as supportiove and informative as we have.
Have just read your second post so came back to read your story. Don't apologize! We understand and have taken the help when we needed, and then give back later!
My husband had CBD and diagnosis was only 3months prior to death. It was obvious to me, that something other than PD was wrong.
I agree with Kevin that being prepared is a big help!
When my 12 year old granddaughter saw her granddad walking strangely, I told her his brain had forgotten how to walk. She seemed to accept this and then shortly it was obvious that his brain was sick.
You have such a long, hard road ahead! We will be with you along the way and understand.
You will take from our combined experiences, thoughts, ideas, and difficulties. We have been there too!
Can I suggest that when you tell your girls, that you explain it in a similar manner.
Waiting with the diagnosis inside you is the hardest thing! There will come a time when the girls will notice and ask questions. Give them the simple answer first - what will answer their question! Bit like the questions on sexuality, really! At some point it will need to be explained more fully.
Diagnosis of PSP is as devastating as a cancer diagnosis! Less well understood but maybe more predictable. Get to know your enemy together, and fight it together! Enjoy life to its fullest together! Make memories as AVB says!
There will always be someone here on this site to listen to you both, and to help you to understand and fight this disease.
Just wanted to say hello. I've never posted on here before.
My Husband was diagnosed nearly six years ago at the age of 48. Our girls were pretty much the same age at the time. Your story is very similar to ours.
Somehow we are all still here 6 years later - it's not been easy though.
I don't know what help I can offer but over this time we've made lots of nice memories through having holidays, going to concerts etc. Even got a dog which everyone said was the worst thing to do but turned out to be one of the best !!
Now we are in a position where taking holidays abroad would be practically impossible so although we've spent a fortune I'm really glad we did it at the time.
We've had lots of good support for him from Physio's, OT's and speech therapy. Our GP practice has been fantastic.
I had hoped to try to sound a lot more positive in this reply but it is really tough.....but as i say we're still all here and the girls are doing well.
Tears in my eyes here as typing this is difficult for me............but as you can see from this forum, there are many people on the same journey.
I don't know if you will get much response. Your post is sort of buried and in a thread rather than standing on its own.
You might try copying it to a new stand alone post.
It is difficult being positive when being beset by so much. However there is no requirement to be positive here. This is one place where you can moan, shout and rail at it all.
It sounds like you have done really well getting organised. 48 years is very early, that must have been a shock.
Yes, we are all on the same journey. I do hope you will be able to post here again soon.
I have just seen your story, and felt as though I had to send you a message. As you also stated I don't post messages on any site, but I did write on here a few months ago because my husband was diagnosed 6 years ago - he is now 56; and I really wanted to find somebody else who was dealing with the issues that I was; because being younger and with a family still at home my fears and worries were so different from most people who appeared to be older when diagnosed with psp.
My husband is now very poorly and we have just moved onto mixed care - 4 days in a nursing home and 3 days at home a week; this was the last thing we wanted but everything became too much.
Thank you for your reply. It must be so hard when you have children at home. My children barely notice that Phil has this vile disease at the moment. It isnt obvious except for him losing his balance. But I do fear for the future. How will they cope seeing him deteriorate etc etc? ..
I have just read your posts - my husband is now 56 and in the final stages of psp. He was diagnosed with a Parkinson's type !! Illness six years ago and very quickly got the correct diagnosis of psp a short while later (through perseverance).
we attended a couple of psp assoc meetings but I found them really depressing because Paul wasn't that poorly he was still walking and working and it felt as though I was sat in a room looking at my future. And everybody was older, I just didn't feel as though my fears and concerns were really the same as the other people because we still have children at home/school.
It has been really tough, and I remember Paul giving up driving - which was huge for him, but I think he knew because he had had a couple of minor bumps never totally his fault but still showed a slowing of judgement.
It is a horrible disease and I have tried desperately over the years to 'read' the stages and keep asking where Paul is - but honestly it does appear that everybody is different. I think our defining moment was sorting out finances; I was so scared because Paul was self employed and obviously we hadn't expected him to stop work so young - but once we got some really useful financial advise I felt calmer and more able to just concentrate on Paul and not have that added worry.
Karibu understand your husband may never accept my husband has psp at least 9 years and I now realise he will never admit it. So just make sure to look after yourself, and remember we are all here for one another . Ronnie xx
Hi. I am so sorry. I feel for you all. My husband was diagnosed at 48. I feel he had it....the personality changes part....at maybe 46. He is 51 now and the disease ia moving rather quickly. He can not use hus hands at all. Period. Nothing. Stuff neck and eyes close and water often. Slurred speach but he can be understood. He has a 12 and 14 year old. Girls. It is a horriblw disease. I am 46 and loving his and caring for him the best i can. It is truly hard. God bless you. Keep in touch. Kelly
I am responding to a post that you submitted approximately 2 years ago, I am 40 years old and being diagnosed with PSP. Unfortunately your post sounds very similar to my situation, I hope this post reaches you and your husband doing well. I am curious how things have progressed for your husband and if you have any advice for me and my family.
so sorry to hear your story & your husband is so young & you have young children. My husband is 76 & has had PSP for 5 years. Not going to lie it’s a very hard journey you are going down. Hope you can get lots of help & all the support you need. Have you joined the PSP association, they can help a lot. There no is 0300 0110 122, email helpline@pspassociation.org.uk. Stay strong. Love to all your family xx
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