Hi, my name is Anne, on here, known as Heady. My husband was diagnosed with PSP back in 2013, he lost his fight with this evil disease six months ago.
I can't get involved too much, any more. I am sure you will all understand.
One thing I do want to get across, especially to those that just read and don't get involved, is how much this site has helped me.
I joined, just like you, when Steve was first diagnosed. Had never heard of PSP, consultant told us to go home and google it. That was the sum help we got from him. It went down hill from there. I fought, like the rest of you, day and night to get help for my husband. The only place I found help and support, was here. The only people who knew what we were going through, who gave advise, told me what to expect, most of all, gave me a shoulder to cry on. Basically, got me and Steve through our journey with PSP. His life was certainly helped, if not prolonged, in a liveable state, because of the knowledge I got from this site.
Even now, I am getting support. I have just had the real pleasure of meeting one of my pen pals, Sawa, from South Africa. She is over in England at the moment. We were immediately at home in each other's presence, knowing we had both been through the same wringer.
The point I am trying to get across, by just reading, you won't feel that love and support, I felt and still get from the lovely people on this site. You have to get involved, you have to be brave and answer the post, you have an opinion on. Write that post, asking the question that has been worrying you, especially at 3.00am in the morning. The very reason, they ask for a user name, is to protect your anonymity, to make it easier for you to express your real feelings, that you won't/can't tell your closest friend. Anne would never have been able to open up, admit failure, ask for help. But as Heady, I could ( God bless my grandmother, it was her nick name!) she gave me the ability to ask questions, especially the seemingly silly ones. To shout and scream, kick and rant about how crap life was. Anne, is a wonderful actress and everything is fine. I am sure you recognise that!
Please if you are like me, change your name and get on here. This site IS the only place I got help, love and support from people who knew exactly what I was going through.
You are not alone in this terrible road called PSP, there are others out there, just like you, frightened, lonely, not knowing where to turn. Only together, reaching out to each other, will you make life bearable for your loved one and yourself.
My heart goes out to you all, going through this evil journey of PSP. You can make it, you can look after your loved one, but only with help. That help is here, with your fellow carers. Please join in.
Lots of love
Anne/Heady
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Heady
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Fantastic post heady!! As always you hit the nail on the head! You have been the most amazing support to me over the last 19/20 months and without you and the other dear people on here I don't know where I'd be now?!! Your post is 'spot on'!! Thank you darling for bringing this to everyone's attention x
Actually Anne that should have been more than thank you, what you have written is more than your experience, its telling me to open up more on here and not to worry so much about what I say, I feel so miserable, C is depressed and suicidal and I find that hard to deal with, but I don't write it on here as I feel, people hearing how I feel would not help them, but in fact it could and could probably help me.
So a massive big thank you and I will try to write my words and feelings more.
Hi Helen, that's my point. You writing your inner most fears, one, helps you understand and maybe find a solution. Two, the replies will make you know, what is going on, is actually normal and everyone is going through exactly the same. All the things that aren't written in the manual. Because everyone is on different parts of the journey, someone, will have gone through, what you are and maybe offer you some advise.
Is C on any sort of medication for his depression? Most sufferers are.
Yes he is on anti depressants has been for years, he now takes venlefaxin the highest he can take without being hospitalised. I've lived with his depression and suicide threats for years, but now it seems different, as there is no quality of life anymore, and I don't blame him it's crap and I can do nothing.
I understand that by me speaking out could help someone feeling the same or going through the same, but it's hard to express how I feel, when he is going through this, I feel I shud be grateful for it not being me but I'm not I just feel my life is completely on hold until his end has come, and that is selfish, I know he would not be caring for me if it was the other way round, see selfish. Don't get me wrong I feel very sorry for him and do everything I can to make his life easier and better. But I obviously feel resentful somehow.
Our marriage was over 20 years ago, but we lived together as a team, it was not possibly at the time for us to split completely, and we just carried on till this happened.
I love him to bits, we have been together for 45 years, life would be weird without him.
Helen, we all feel resentful. Our lives have been just as messed up as our loved ones with PSP. I always feel, it two going through this illness, one has PSP, the other suffers the symptoms. Every one puts carers up on the huge pedestal, yet we all know we are no angels and feel we fail every day. But we deserve to be up there. Instead of thinking where you fail, look where your husband would be, without your help and support.
I have only been here for a few months and I was told there was no cure for what I had and as you I was told to go home and Google CBD. I was shocked to read what it entailed and found this wonderful group on the next day. It took me a few weeks to come to terms with the diagnosis.
I live alone and I have no wish to burden my 4 children or sister with the job of looking after me as my problems develop. I have not yet asked here if anyone else has traveled this path on their own, but will ask this question soon.
It will be a hard road, doing this on your own, but with the right help, you should be able to do it, for a while. Just don't be shy about asking for that help, if you are, that will be the quickest way for it to go pear shaped!
Bravo Heady/Anne but you needn't think you can get rid of us that easily ,not a chance .Friends for life I am afraid .
Georgepa
Its ok , joking well kind of joking ,but the sentiments you are expressing will be useful to all those following this torturous path . I think I might change my site name to Geraldine a tad mre annonymous than Georgepa ,what do you think ?
Hey K1 hows you and the wife...i'm doing like I ought to be doing well usually. I need to find a job. Don't want to go back to teaching and quite skilless in anything else...not all that skilled there either, I am sure.....I don't want to work in food industry as I don't like the stuff that much.....can't work in a factory or any other large machined industry ; too dumb to work on or at a computer.... so whats left? hotel maid, college professor; marketing? hahah...Stand up comedy might be fun....
But its summer and we are still together. We get good care now, three times a day. That makes a huge difference.
But, to be honest I'm often tearful inside when I see her struggle to do even simple things.
Ah, I'm like you. Totally specialised in the mental health Field. I gave my license up and getting it back would require all sorts of training to show I am up to date. Its going to be supermarket shelf stacking for me I'm afraid!
Wishing you the best.
Lots of hugs from myself and Lizzie sends them too.
Oh Kevin, I think there just has to be some way for you to get paid to do what you are doing for us for free here - advising folks how to navigate the health care bureaucracy. You are such an expert!
So true Anne, adapting to life without our loved ones is not a bowl of cherries. No matter what social or family activity and new routine days, nothing fills the void, quickly, especially in the dark nights. Thanks for your good words, not just now but over the last 3 years which helped keep me sane. Hope you are moving on without too much grief.
Best wishes to you and all who have lost their loved one to PSP especially this year. Tim
I can understand the need for you to build a new life. PSP takes so much from us all?
I totally agree that people who read posts but don't share their experiences are not getting the best from this site. It has gone quiet recently and I wondered where everyone had gone. I always read the posts and help if I can. However there will probably come a day when I do as you are doing. So new people need to open up about their problems and they will be swamped with love and support. Otherwise the site will fade away and that would be tragic for all those newly diagnosed or to be diagnosed.
Perhaps we need a new group for widows and widowers/children who have survived PSP too?
Anne you have been so helpful to so many people. Enjoy the rest of your life. Perhaps you might send some of us a message from time to time?
Here here Marie....I don't think Anne is leaving I think she is encouraging those who are new to the site to become more involved. Like you said it seems to be fading . Maybe praise God, so is PSP! but if its still around then new people to this site, so should you be....I won't be going very far .... if someone wants to yell ,ask, tell, me a specific something feel free....I think that goes with the rest of us too
I'm not going any where. I still read every day, just find it difficult to find advise for some problems. As AVB has said, there is a site for bereaved people on Healthunlocked. Didn't find it helpful though.
Glad you are not vanishing totally. Wouldn't blame you if you did as you have been such a help to all and looked after Steve so well too. Time for you to have a life?
I do remember you having the odd meltdown too and I have to say it really helped to know others were feeling the way I felt. That's the kind of thing that is missing now as people are afraid to share their emotions?
I agree with you that the next step is crap too! I think maybe we expect too much of ourselves though? When you consider what we have all been through with our loved ones it's a wonder we are functioning and sane...well kind of! 😀
When are you going on holiday? I think you are really brave! I don't think I am ready for that just yet. I have no doubt there will be a day when I actually want to go somewhere. England is so beautiful when it's not raining that I am happy here for now. Might venture to Scotland eventually. Ireland too. Can work my way out? 😁
Thank you Anne for all your help and just hover in case you are desperately needed? I still feel it will take a while to become real again.
Wanting to hear the details of that holiday as I think it will do you good. Wish I had your strength.
Agree about the Bereavement site by the way! Although one of the people who runs it has posted a good report about grief just a day or two ago. Read it as it might help?
Yah, I try but it's nothing like this site...and the depression site keeps knocking at my door ....I don't want it . I'm sure it's useful but I don't know how to cancel it....I can happily say I am not depressed and don't want to get there....I read a booklet given to me by B's Hospice about grieving....it was what I was feeling to the T. They even talked about the grief feelings one has when they knew the end was near....So there, I am grieving...the hardest part about this is that I am in the "stuck Phase". But hey this site is about getting through PSP and I will keep it that way,,,
Hi Andrea, "the stuck phase" I keep thinking I am there, but have to remind myself, that is at least two years, if not more down the line. We are both still very new to this. I am going through the six month blues. Up, feeling perfectly normal one minute, then floods of tears the next. Haven't been like this, all the way through. Perhaps I feel I can now give into tears. Until recently, I was more than happy to be on my own, even preferred it. Now I hate it, feel so lonely and fed up. Hopefully, this will force me into getting out more, finding things to join in, meet new people. Start living again.
Yes Blood pressure up then it';s fine but my heart rate is a 110 then it's fine and then straight up anxiety ....I make myself walk the dog about two miles every day....two goals walk dog and no alcohol! been doing quite well on both goals.....eating is still well lets just say I eat every day......hahaha
Anne, Heady, lover of Steve, sister of everyone who's' been on this site for the last 4 years. That was a beautiful post. I too feel the same about my presence on this site. I want to encourage the folks who have just been diagnosed to write; ask; tell; rant and rave....You will find a love and camaraderie not found in the doctors office.
Like Anne, I encourage all those who are new to this diagnosis (be it patient or carer), to become a part of this post....who knows you, may help- someone with a word that will get through one more day week month even year......
Thank you again Anne Though not as participatory as I used to be, I do miss the gang ....
Dear Anne, As usual you have given us a very honest account of your experience and sound advice. I'm ashamed to say that this past while I've just been dipping in and out of the forum and commenting now and again which is just not fair to everyone who has helped me on my ongoing journey with PSP. So apologies to everyone.
Anne I hope you will not be too far from us as you are a fountain of knowledge but I can understand if it hurts and reminds you of the awful times you and Steve went through and it's time for a new start for you.
Thank you for being my 'friend' whom I'll never forget and for all the support and advice you gave. I wish you all the very best for the future. Sending love and hugs to you. Nanny857 xxx
Thank you. But I am not going anywhere. It just meeting Sawa the other day, made me realise, how much some people are missing, by not joining in fully. The love and that feeling, you are not alone. There is always someone who can sympathise and know exactly what you are going through.
Brava, Anne! You speak the truth, as always, bravely and directly and well. I love you, girlfriend, although we have never met.
Sarah, aka Easterncedar
( Like Heady/Anne, I originally didn't want to use my name, being concerned about protecting my sweetheart's privacy. That is no longer an issue so, while I loved being called Easterncedar and will not entirely give it up, for anyone who cares, my name is Sarah. Love and peace and courage to you all.)
Thank you, daddyt for your blog! I have gained a great deal of insight into how my J must have felt because of your openness.
I now feel strongly that early diagnosis of brain disease is most important. Hopefully, at that point and with this site, people will have the courage to share with their loved ones, how they are affected and can make the most of the quality time they still have, and for carers and loved ones to understand them too.
Hugs
Jen xxx
Again this site is so powerful for so many reasons.I thank you all for being here , knowing this is truly the last place anyone would want to be.
I have only just started to post as I felt it was disloyal discussing PSP issues but it is a very lonely time and knowing that others are also feeling the same does help. Thankyou for you post. J
There is nothing disloyal about discussing your loved ones problems on here. The amount of times Steve's life was improved, because I got that necessary bit of advise, or someone calmed me down, picking me up, when I couldn't go on any longer, doesn't bare thinking about. Without this site, my husband would have been in a nursing home for most of his illness, all my knowledge came from people on here. The medical profession were absolutely useless. Nobody EVER told us what to expect or how to deal with PSP. Only here did I learn the dreadful truth, which gave me the strength to fight for the necessary services he needed.
Thanks heady aka anne, when we were told Ivor had psp no other information was forth coming , no one knew any thing about it , let a lone pointing us in the right direction. If our daughter hadn't looked at this site we would have been floundering like a fish out of water.so I for one thank god for you and the other carer's who post such excellent advice , with good humour . And straight forward language, are there when we need a lift. I haven't needed to write and ask for advice.so many of our problems have been experienced by so many others, and already been discussed. So once again thank you for passing on you valued advice. Would like to meet you one day to thank you in person, you never know this may happen.....Brenda. .x
Yes Heady I am so grateful too.A year nearly has gone and I can talk to people who have never heard of PSP and not blub!Obviously I still read this site and try to offer my experience.Love to you all,Px
Thank you Heady, you are so right the only people who really, know, understand and do not judge are the members of the site. So many HCP have absolutely no idea the hell on earth that is PSP.
Some days there are no words and no energy to contribute. But as with most things in life the more we put in the more we get out. You and NannaB were the first people I came into contact with on this site. The care, support and love is amazing here.
Hope everyone has the best Saturday they can wherever in the world what ever stage of their journey.
Never a truer word spoken Anne, this site is basically the only true emotional support we get and we would be totally in the dark about the journey of PSP without it. Thankyou for all of your input, we are all very grateful for that and I hope that your pain is beginning to ease as the months pass. I will message you to get your details for when I manage to get down to Bristol and hope that w can meet up for a coffee.
Anne you are an amazing lady, you have helped so many of us, I can remember posts from you, always the wise one. You fought to get all the help for Steve, and then you helped us get the help, we were denied, you are truly amazing. Yvonne xxxx
Thank you, Anne. I so appreciate the help I've found here. Been kind of overwhelmed lately because my husband's symptoms are progressing at breakneck speed. All the "regular" stuff is worse. Plus now we're dealing with some wicked personality changes. I fear it's frontotemporal dementia. To those of you that have been sharing and supporting for some time now, thank you! Even when I'm silent I appreciate you knowledge and support.
Hi Chris, please don't be silent. That's when you need us the most. I always found just writing things down on here, knowing somebody would understand exactly what I was going through, helped me sooooo much. Steve never had any dementia, so I can't advise, but I am sure someone will. Write a post, asking for help. I wish you well and hope that your husband finds a plateau very quickly.
I just want to give thanks for all the friends on this site,both vetrans ans newcomers.We are all in this together and there is really no where else to turn for the best advice and encouragement when new problems or symptoms emerge. I love all of you!
Dear Anne, what a wonderful post 😊. And what a special treat to have been able to meet you in person. Folks, our dear Heady is even better in person and is the perfect hostess who gives the best hugs! I'm sorry this is such a quick visit but I'm looking forward to our next meet up.
What you say is so true. I found such amazing support from this site through our journey. The practical advice was a life saver on more than one occasion. But the unbelievable generosity of everyone, in the midst of struggling with the daily demands of PSP, to still share their knowledge, time and unstinting support to other members was humbling. And it also helped me to help others when I could. The participation helps everyone, the poster and the readers. What an unfortunate in PSP but fortunate group we are to have found each other!
Thanks Sharon. It was meeting you in person and the bond that was so obviously there, because we had taken the time and effort to communicate, that inspired me to write this post. Realising that some are missing out on that love and support I received from you and so many others.
Very well said and I totally agree. This is the best support you can ever get. Only from others going from the same thing can be so supportive. It's great to hear from you Heady. I hope you are doing well. Glad to hear you were able to meet with another person you've communicated with through the site. I've wondered how often that happens. I know it's a very difficult time for you, but it's time to take care of yourself and grief, get your life back together and decide what is next for you in life. Please check in once in awhile. There are so many people that need the wonderful advice you have. Love and prayers for you.
Anne: I am confrotned with this damn PSP with my wife.. the very tough part is the acceptance that I have NO control over this horrible disease. You are a brave lady and did what you possible could do for your husband. I sincerely wish you well one day at a time.
Hi Benjamin, you do have control, not a lot, granted. I suggest you write down things you can control and the you can't. You will be extremely surprised how big the control column is. OK, it might be only the small things, but it's still control. Might help. I never use to be a control freak, although my kids say different, so I totally understand your feelings, of trying to have some sort of say in your lives.
There hasn't been a single question of mine that have not received answers in this place. I am grateful to all of you who responded and am responding to the ones I can.
I would like you to know that your voice has been essential for Liz and I as we travelled this road. You've been quite a midwife for us!
So I would say, as you might, as you hand the baton on, "Please folks, there are no experts here, we share and we add to each other and even a simple question gives the opportunity for someone to post and in time you will start adding important stuff for us all.
Thanks Anne
I am glad you are moving on and we both wish you the very best of what you can envision for yourself and your folk.
Thank you! Thank you! Thank you! Heady/Anne, your wisdom, your kind words and unwavering support has gotten me through many a crisis and many meltdowns. Mere words are not enough to describe how you and so many others have helped me when I couldn't find any answers or any support. Your spirit as a caregiver gives me the courage to carry on with my sister.
I, too, feel guilty for not posting lately. I began to feel like I did nothing but rant or cry on everyone's massive shoulders and have nothing to contribute. As usual, your words of encouragement open my eyes to see the bigger picture and to come out of hiding.
I wish you brilliant and beautiful blessings as you continue in your journey. But, selfishly, I wish that you come around from time to time. Your wisdom and heavenly spirit are still needed by some of us and our loved ones still hanging around dealing with this dastardly disease.
Too true, Heady, Well said and thank you for saying it. I think I would have gone under without this site. It's like a second family and there is always someone willing to help you, as you are doing now. X
Well said Heady.Hope you are ok and enjoyed the good weather.My hubby had a stroke last week but poor lad cant walk or talk anyway,its just made him look more poorly.The nursing has proved to be amazing,superb care.He has now been there 6 months.We have another grandson due in 5 weeks.Sooo excited.Good to hear from you.Keep looking after yourself xxx
Hi Millywigg, sorry to hear about your husbands stroke. Steve had one right the beginning of his journey. That seem to bring on most of the PSP symptoms. Lovely to hear you have something very exciting to look forward. Nothing like holding a little bundle of joy, especially when you can hand them back!
Going through some posts and jumping in here as a newbie - as encouraged by Heady - as I know my mum has now posted a couple of times and I haven't wanted to post before she was comfortable doing so herself.
M and I read the posts and compare ideas and thoughts - this site has been so helpful and you guys really are so supportive - you're right - it's a lonely and frightening road and it's a struggle to go it alone.
M does an amazing job caring for my dad (who is the one affected by PSP) and what a rollercoaster it is!
All carers deserve angel wings! I help as much as I can but only see a snapshot of what M goes through with my dad.
I know each journey is different - but I am sure the emotional and physical exhaustion wreaks the same havoc.
WellDone CJ. The more you and Mum post, the more you will get out of it. You get to know other carers, even some fellow sufferers of PSP. Each gives you and insight to their journey, whilst different to yours, in many respects, exactly identical in others.
The best advise I can give you, in helping your Mum, is make sure she gets regular breaks. Either you sit with your Dad, or better still, find someone else and take her out. That way, you know she is relaxing and doing something nice. And NOT sat in the car around the corner crying because she doesn't know what to do. Believe me, I did that loads and I am sure everyone else has as well.
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Wishing you all a Happy Christmas
A word to say. THANK YOU ALL💘
this one is for all the family members and carers!!
\"Why am I so tired all the time?\"
