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Sorry so many posts but this is important!!

Kevin and I have just been chatting and we want to know a few things. The reason is that we want to obviously raise more awareness about Psp and at the same time raise more awareness about this Psp forum!

So Kevin and I talked about our forthcoming meet up and how this makes us feel.....for me personally, I genuinely love you lot, without you over the last 2 and half years me and my mum and dad would be goodness knows where?! I’ve attended a Psp meeting and didn’t really like it, found it a bit bloody scary to be honest, so to come on here and find every answer I’ve ever needed has been an absolute blessing!

So we will definitely now arrange future meet ups around the UK, not just in London! And these meet ups will be time off (as Kevin put it) a time to laugh, chat, eat, drink and have fun! I often forget what fun is, expect you do too?!

What has this forum done for you? Could you live without it? Have you met anyone from it in person? What particularly good advice have you received? Your answers are needed so as we can get the forum to exactly where it should be! So c’mon share!

Thank you

Amanda x

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Waiving :)

This forum is a wonderful place where we can share information and reach out to each other.

Currently it is a poorly promoted stub of the PSP Assoc. (Who are an incredibly effective organisation doing fantastic things with poor funds.)

My experience of local PSP Assoc. groups has not been so great. Face to face folk are cautious about sharing the darker side of caring and suffering. That is understandable and meeting carers and sufferers is important, it has its place.

Forums have an advantage that folk can share their fears and doubts anonymously and can get support.

Some of us are 'up front', but some of us , quite rightly read and form their opinions privately. That is the beauty of a forum.

My experience is that this forum is also a place where we can pool an enormous amount of experience and also clinical information handed down to us from clinicians across the globe.

It's a remarkable space for me, quite unique.

I think it's time to raise the profile of this forum.

Let's get it better established and more widely known.

What might be very helpful is if folk wrote a few lines here about how it has been a help for them.

Also any criticisms.

Please, if you feel OK about it, folk who just read - please write a few words. You needn't get caught up in a conversation. Just write and walk away from responses - that's OK.

Some of us are looking at ways to develop this into ways of creating local networks for those who want them.

We are not talking about change, this works, we are merely looking at creating additional opportunities.

So... please post any thoughts and ideas on this and any comments about how this forum has helped or hindered you.

Wishing folk well

And thanks for all that you have given me and Liz on our difficult journey. We could not have done it without you.

Warmly

Kevin

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Wow you are clever Kevin! You write beautifully, thank you x

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I agree with you there Amanda.

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Tsht. You are too kind.

xx

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Well said Kevin!

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PS

BTW thank you Kevin for your help on getting a CHC checklist done from the hospital. It’s been done and submitted so just awaiting for appointment for further assessment.

Thanks again for your tips

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Good luck - Its an anxious wait eh? I shiver when I remember we are reviewed in May!

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This forum provided me with , medical advisors, mentors, psychologists, psychiatrists, friends, comforters, reassurers, confessors, and especially, when I was down, big hugs! It sustained me when my lovely husband was suffering the devastating effects of PSP. He died on 19th January free from the dreadful disease. I will never be free from the trauma or hatred of it and if we can fight it in any way, I am with you.

We had PSP envelopes at the funeral and last Christmas, my cards had a small PSP information card with them ( obtainable free from the PSP Association UK.)

Meeting up? Great. I'm in Yorkshire, anyone else out there?

Well done and thanks Kevin and Satt. X

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Bless you Robbo! I like how you included Psp cards at the funeral, a very good idea on your part! Will we meet you? Yorkshire to London? Wow that’s a loooong way my lovely x

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This is a work in progress Pauline for future meets...x

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Well I can't match Kevin, but I will try and put my thoughts to the ether.

This site has been an extremely safe place for me to rant and rave about the evilness of PSP. For others to tell me the truth about the future, without Steve being in earshot, so I could take it in, get my head around the future and be prepared for what was to follow. To understand my thoughts, my fears, in the privacy of my own space. To actually be in contact with people whom have heard of PSP, who understand its horrors.

I have never been a person who opens up to anyone, always hidden behind that final closed door, that nobody was allowed to enter. Except you lot! I can't hide from you. You know when I am telling porky pies (lies for our US friends !!!) because you are in exactly the same place as me. That freedom, has really opened my eyes to the real Anne. I am postive that helped me be a better carer for Steve. Being on here has shown me, actually I am a strong person, I can/could cope with what life had thrown at me and Steve. Kind folk have said how wise I am, I'm not, but trying to see things from a far, helped me put things into perspective and writing replies, helped me to understand what I was going through. I think we all reply to ourselves, just as much as we reply to the actual post.

We did go to our local support group. At first I hated it, but Steve found comfort, so we kept going. Best thing we ever did. Got loads of support and help, which I have past on. Mary, our local coordinator, is the best. She held the group together, whilst looking after her husband. She still keeps going now, two years after her husband died. We have all benefited from this special lady. We have always promoted Healthunlocked at the meetings. Please remember, it's not part of the PSPA, they kindly put a link on their site.

There are other sites out there. Cure PSP have a page, not that I have ever been on it. Also, Facebook have a site, didn't realise, Steve's son was on this one. I think he got help from it.

I don't know how we can help promote this site more. It can only be word of mouth and how many of us actually meet another family going through this nightmare. Although, a friend of a friend has just been diagnosed with PSP. I have passed on my details, the PSPA and this site. Whether they have joined I dont know, i doubt it yet. I mean, who wants to know the future, where this evil disease is concerned.

All we can do, is help promote PSP awareness, which just by surviving, we do each day. Everyone of our GP's, no matter how useless, now has heard of this illness and hopefully will recognise the symptoms, that tiny bit earlier, which WILL eventually lead to knowledge that will help cure this evil disease. We ARE doing our bit. I know it's not enough. Perhaps Amanda has found a way that will make a difference. Us getting together, to have fun, a good old natter, giving us strength to recognise that we can make a difference. Strength for those still going through the nightmare and a purpose for those of us on the wrong side of PSP.

Sorry to ramble, for those who have bravely read this to the end.

HEALTHUNLOCKED RULES OK,!!!!

Lots of love

Anne

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Wow Anne, brilliant, your reply actually made me cry! Thank you for sharing darling x

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Brilliant post Amanda! I too, have got a tear in my eye, reading everyone's comments.

Lots of love

Anne

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Well said Anne.

As usual you and Kevin have eloquently said all there is to say. This site has been my support, so thank you all.

xx

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Couldn't have put it better Anne, this site is a lifesaver when you have such little hope and nothing to look forward to. Sending you lots of love m'dear.

Kate xxx

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Amanda I cant write as eloquently as Kevin or Heady but here goes. Nobody told me about the forum, I found it when looking up the PSPA website and joined when W was in the early stage. It has been a godsend. Reading the posts from those who had been there and were further advanced helped me prepare both mentally and practically for what lay ahead for us. But most importantly was the feeling of being part of a loving, caring online family who understood you, more so than actual family.

W and I attended our local support group and when I mentioned this forum nobody had heard of it. Unfortunately our group, which was the only one in Northern Ireland, has now folded, so this forum is all I've got to keep me informed and keep my sanity.

I'll watch out for your meeting up dates and hopefully join you. Lots of love Nanny857 xx

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Fantastic reply nanny857, and I hope one day we will meet! X

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If I can arrange for someone to sit with W and I can get flights that don't cost an arm and a leg, I will be there. Would love to meet everyone. xx

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Oh my goodness!! That would be absolutely amazing nanny857!! X

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Hi, I found this site almost by accident while on Facebook, I think I was on a different PSP page and health unlocked was suggested. I had seen that the PSPA had an on line support group but without looking at it assumed it was only for asking for specific help, I also wondered if it would be relevant to me as I am not the primary carer. I only recently found out that this group is the PSPA one.

I am not one for asking for things, it doesn't sit easily, but the knowledge that some people share on here has been wonderful. I have learnt things and shared them with my Dad, who is my Mum's main carer, and it has been useful.

The isolation that this rare illness brings makes it hard, I still have not met anyone else that has even heard of it, so to know that on this site we are all dealing with the same thing really helps me.

I am not sure what could be done to reach a wider audience, if someone is not in the right place mentally they won't even want to join if sent a personal invite. My sister still does not like to hear about what the future might hold for our Mum.

The other thing that makes this site work is that you do start to get to know names and that helps it feel like a friendship group. I worry that if loads of people were on here then that personal feeling might not be so obvious, yet it is so good it is horrible to think that people who need it, are not aware of it so can't access all you wonderful sharers of knowledge. Julie

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I get what your saying Julie! And your opinion is great fully received x

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Hi everyone

practical tips have been so helpful from this site but knowing someone understood was the life saver

I have met Heady but Bristol is a long drive and I have been having chemo so days are good but often not so good

During a cancer related procedure the really nice doctor asked about family and I explained I had lost Des to PSP.SHe asked to be enlightened Appointments are for 15mins would have talked for an hour and not covered all its horrors.We really need to get everyone from the top down to the less trained to understand this awful disease.

I would love it to be a theme in a drama on TV but realise people like happy endings and PSP cannot provide one.

Love to everyone who has been there or is still there

Pauline

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Bless you Pauline, thank you for sharing and sending you the hugest of hugs x

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Hi Pauline, there is a drama called a Short Stay in Switzerland starring Julie Walters, a true story about a doctor who had nursed her husband with a similar disease and was the diagnosed with PSP. She chose to go to Dignitas in Switzerland. It is a difficult watch!

Love Kate xxx

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I’m gonna watch this! X

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When was this on? What channel? I think I would like to see it.

Lots of love

Anne

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I think it 2099 bbc1, I might see if it is available on Amazon or eBay, if I get it Anne, I’ll send to you after I’ve watched it, I’ll let you know if I find it x

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I have saw it at youtube

Wear1947

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Anne, it’s a good few years ago so would either be archived on bbc or utube. I watched it’s years and years ago, way before Ben became ill. xxx

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Yes. I remember it too. After Chris was diagnosed I'm sure I saw the book mentioned when I was browsing PSP

x

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I found this site by accident, when I was looking for psp info.but what a great site this is, I have,earned so much ( and cried so often ) of what to expect when I am getting worse one day, I should be prepared,

.the only regret I have is that my husband, my primary carer, doesn't Want to know about the future, he takes it as it comes each day . Which is a great pity, because I would want to share my feelings,. He is a great carer for me, but I think it would be good for him to attend with me one of your future meetings, as we can’t make it this time.

I think you are all wonderful people, and I would suggest any psp patient to follow the discussions on this site, unfortunately, living in France as we do,, doesn’t help a lot, as this is is an English speaking site. Maybe I should try to set something up in France ,in French ???

Wishing you all a great meeting ,

Je vous embrasse très fort, Anne Baer

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Hey Anne what a brilliant idea you’ve had!! Ive never thought about that! Sending you much love my darling, take care x

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Well I find this forum essential. My husband has CBD which is a bit different but there are plenty of people with the same thing who also post and of course there are huge similarities with PSP.

Here are my thoughts. I tend to be a reader rather than a poster for several reasons. I work full time so tend to read it late at night when I am really tired. I mean to post but then don't. I also find it difficult to share really challenging things because I am aware that there are people who have just joined the forum who might be frightened by it. I find the fact that people are so honest is fantastic, as at home I am so conscious of trying to protect his dignity, which is really difficult when such a horrible illness affects him in awful ways.

I do find the local group really useful and go when I can. I have also found the PSPA helpline really good and tend to ring them when I am really up against it. The last time was when he was in hospital and the consultant said they would no longer treat him. PSPA helpline support just to listen and make suggestions was great.

I have found all your posts so helpful and life affirming. For example I read your advice a lot when we were going through the CHC process. Whoever posted the conference presentations about oral health was also great - I now have the community dentist visiting him at home.

I am also really grateful to people who continue to post after the death of their loved one. We all know it will be us in that situation soon and it is really comforting.

I think meeting up in a pub sounds great and I am sure people may be a little more relaxed in that situation!

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Thank you Rowan for your very honest reply x

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Hoping to be there on 6th......

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Whoop whoop!! X

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I came across this site whilst browsing the internet on the recommendation of the neurologist and became addicted !

I've found it an invaluable source of information on all aspects of PSP. I have met up with a couple of friends I met at the local group both of whom post on here.

The main value of this site for me has been the support, understanding and love I've received here. Like many, I expect, I am very good at putting on a brave face. I always cope. I am private and my main support has always been my husband. So when seen outside we would laugh at the problems if at all possible.

So it was special to have a place for the lonely times, the despairing times, the frightening times when I can offload, rant etc. and know every one knows exactly how I feel. Also I could offer the support back. It does feel like a family - the friends I feel I know so well, who can share the bleak humour.

I'm glad to read that we who have moved to the next stage are still useful. I sometimes read the posts and cry , remembering my own experiences. I think it helps my grieving.

Looking forward to meeting some of those I feel I know.

love to all, Jean x

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Bless you jean thank you for sharing and I very much look forward to seeing you on the 6th x

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I have found much help and comfort on this forum,both while my husband Don was still alive and since his passing.My main reason for still coming on,reading,and occasionally posting,is to try in some small way to be a help to someone who is still struggling with this horrendous disease.If I can answer a question someone has or be supportive in some way,that is my goal.

I also find that I am amazed by the awesomeness of those of you who post your heartfelt feelings and worries here.The disease that we all share in common robs us of the person we once knew,but we can share memories of who that person was with others who understand! I am deeply grateful for you all!

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Again Jane I so appreciate your input on this post, very useful, thank you x

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Thank you for your post Amanda and I think it would be wonderful to meet up for a friendly fun filled afternoon . I too, took mum to a PSP meeting in Liverpool 2 years ago now and it scared the life out of me .. my poor mum was just silent looking around ... I know what she was thinking and yes she has progressed .

What has this forum done for me?

When I first came on this site if I’m honest it really upset me reading all the posts . The grieving process had begun! However this forum has helped me face up to what is happening to mum and man up so to speak and learn from the experience of everyone on here how best to care for lovely mum.

What advice have I received?

I received invaluable advice on all the stages that mum has gone through and is going to go through so I am as prepared as I can be. Advice with therapists has been gratefully received . Advice on devices that may help mum have all come from this site.

The support of people going or gone through the same thing and having compassion here is precious and invaluable .

God Bless you all

Jude x

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Jude a lovely response, thank you for the invaluable reply x

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When I was new, you welcomed me in to the "tribe" to stand by the fire and be warmed;

When I thought I was alone, you showed me I was not;

When I was falling in darkness, you spread a net under me;

When I was frightened, you comforted me;

When I was confused, you provided me with clear information;

When I was bored and resentful, you suggested an online party!

When I was angry, you listened and yelled along with me;

When I despaired, you provided a ladder to me to climb up step by step out of the depth;

When I wondered if I could handle "the end", you stayed, after your journey was already complete, and showed me how to get through.

I love you all: I cannot express sufficiently the depth of my respect for you, for all the different voices and thoughts, and the importance of this site to me.

In gratitude,

Anne G.

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Wow! Beautiful Anne! X

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Amanda, I just made a suggestion under the post right under this one...What do you think?

Anne G.

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I’ve replied under your other reply, sounds like a great idea! X

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Very powerful Anne. Thank you. I hope the people at HEALTHUNLOCKED have read this, to show them how wonderful this site is and how much we appreciate their efforts.

Lots of love

Anne

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Anne, Amanda; I notice HealthUnlocked has some kind of "awards" thing going: Under their Blog section (see the company categories at the bottom of their page): Maybe we should vote that THEY (HealthUnlocked) are the ones we eat to vote for as making the biggest difference in our life at present! What do you think?

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WANT...not eat..yikes!

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Ooh I’ve not seen that, sounds great! X

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Your words of wisdom speak volumes Anne, totally sums up our innermost feelings.

Thankyou for such indepth thoughts

Love Kate xxx

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Wow, this made me cry,it expresses exactly , I think, what each one of us feels.

Thank you so much, Anne Baer

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I found this forum by chance before mick had been diagnosed officially with psp,at that time I used to just read on the odd day .then after diagnosis I was reading every day but it scared the life out of me so I stopped.mick got put on siminet and other pills for his anxiety and things settled down life changed but settled into a new pattern and more isolated,so I started reading again you have made me laugh cry and be very thankful for all your help even though I don't always respond I am so grateful for this lifeline it makes us feel normal .💕

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Thank you for sharing, and I agree this forum does make you feel a bit more normal when you feel like your actually going insane x

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Sorry all away on my break, I agree with what you are all saying, withoutyou all I would of felt so lost, you are all there to pick me up and dust me off so I am carry on, my journey has been hard, but you are all so caring helping us all to understand that we are not evil, you are not bad for not being g able to cope with this bloody illness. I would like to thank you allfrom the bottom of my heart for being there for me and helping me through this horrible time. I love you all and can’t wait to meet up, I am coming with a lady called Pauline who’s husband has psp, she reads the posts, but doesn’t post, will bring her to meet all you lovely people. I am away at the moment feeling guilty, worried if my phone rings that something has happened to George, still feel guilty but I need a rest, he is being well looked after. Thank you all for being there can’t wait to see you all xxxxxx

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briliant Yvonne. Can't wait to meet you at long last.

I know you feel guilty for being away, keep telling yourself the truth! You need this rest, for George's sake, to help care for him that tiny bit better. Remember, Each hour of rest, equals another day of being able cope! Waste that hour feeling guilty, that's one less day of coping.

Lots of love

Anne

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Please Yvonne try and enjoy your break, let the guilt go, at least a little bit! Like you say George is being well looked after! Looking forward to meeting you and Pauline x

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Make the most of your down time, enjoy before returning to the world of PSP, you need the break and will have more energy to cope when you get back.

Love Kate xxx

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Hi Yvonne, enjoy your break and don't feel guilty, easier said than done I'm sure, but you have done brilliantly looking after George. You deserve this and I'm sure George doesn't begrudge you it one little bit. Just think of all the stories you can share with him on your return. I'm enjoying having the morning to myself at home while W is out for a drive with one of his ex workmates. Lots of love Nanny857 xx

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💕💕💕💕💕💕💕💕

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This site is a total life saver for me. It is the first thing I read in the morning when I am having my coffee. It helps me realize I am not alone on this miserable journey with my husband's shitty PSP!

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Bless you I totally agree x

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It's the only thing keeping me sane. I love everyone on the site. Each person gives of themselves so other can manage. It is a godsend in every way.

Cuttercat

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Thanks Cuttercat, I agree this forum is often a life saver! X

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Hear! Hear! Kevin and Anne!

I’ve heard of this forum a long time ago BUT resisted joining for awhile - as I suppose I was unknowingly in denial about Tony’s condition.

I have just joined and what an eye opener for me. Not only has it provided so much information BUT a lot of comfort and support - THANK you all!

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I have been reading this sight for the past six months and have found it invaluable.There is so much to be learnt in preparation for the next thing that happens to my husband. I find knowledge is strength and knowing you are not the only one dealing with this awful disease is somehow comforting

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Agree Denny and yes sadly it is a comfort knowing your not alone x

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Apologies for the brief reply. Will write a more thought through post when I have more than 10 mins spare. I've been meaning to post something for quite some time now (I'm a reader- haven't had the head space or confidence to say hello yet).

Anyway, I just wanted to say, this forum has been a godsend to my husband and me over the last year. Without it we would still be in the dark about PSP and its complexity. Like others, we didn't want to know at the start, we didn't want to hear about what was coming. Every morning the Health Unlocked notification would pop up and we'd be presented with more doom and gloom. BUT, after getting over our own issues, we would not be without this forum now. It's a lifeline. A wealth of information for those at the start, middle and end of the PSP journey. It's made us realise we're not dealing with this on our own.

Very briefly, my mother-in-law, Olive, was diagnosed with PSP about 6 months ago, having been misdiagnosed with Parkinson's about 2 years before that. This time last year Olive was living in the home she'd lived in for 50+ years in North Wales, functioning well. Now she's in a Nursing Home near us in Cardiff, unable to walk or feed herself. She's a different person. It's been shocking how quickly the illness has taken over. Thanks to everyone in this forum. You keep us sane xx

Clare & Neil

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So very heartbreaking Clare and I understand completely because my Dad is in a nursing home too and completely helpless, literally breaks my heart! X

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...and the guilt...heartbreaking indeed. Sorry to hear about your Dad. Deep breaths now xxxx

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Like everyone else here, this site kept me going during those long years of caring. Folk have advised me, laughed with me, cried with me, got angry and been thankful. When I first found the site, and I can’t remember how I did, I made it my mission to spread the word so told my GP surgery, the Hospice and those I met at the support group, writing down the web address and handing it out. After one meeting, a lady came up to me and said, “Are you Nanna B?”. (Remember Jean?). I said I was and asked her how she knew. She said she had overheard me talking to a man and there couldn’t be many carers of loved ones with PSP, who played the ukulele. We met several times after that with our husbands and I’m looking forward to catching up very soon.

I’m meeting someone else from the site later today and another tomorrow. I have met several folk from this site and am looking forward to meeting even more on 6th March.

I was talking to my son at the weekend and mentioned the meet ups in London and locally this week. He said he was surprised I still looked at the site as he thought I’d want to keep away from everything to do with PSP. I told him I’d learnt nearly everything from those who had gone through it when I first joined several years ago and if they had all left I wouldn’t have been so prepared for what was going to happen to his dad. The advice I received made me get everything we needed, equipment, adaptations to the house etc, in advance so it was all in place when things suddenly changed. I also told him that as I’d been corresponding with some of you for years, leaving the site would be like dropping old friends.

Thanks Amanda and Kevin for what you are doing for us all now and to everyone else who has helped so much over the years.

Love to all

Bev

AKA Nanna B

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Hi Bev, I agree with you, not only would I lose some valued friends if I left this site, how can I ever repay those old friends that are no longer with us. The only way, is to make sure their valuable knowledge is passed down to those that need it now.

See you soon, (oh boy, do I like those words!!!,)

Lots of love

Anne

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Yeh! See you soon ❤️XxxX

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Wow Bev, that’s a very strange coincidence at the support group ! What a small world!

Bev I need to thank you from the bottom of my heart, you’ve helped me soooo much over the last couple of years, your advice and understanding and support has been invaluable and I absolutely cannot wait to meet the lovely NannaB!! X

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Oh dear...you may be very disappointed 😱. That’s what is so good about this site. Whatever we are/we’re going through, someone else has already been there. I’m so pleased you had the idea and get up and go to arrange this meet. It’s been mentioned several times over the years but you set it in motion. Well done and thanks Amanda.

XxxX

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Meeting? When ? Where? We have trains from Yorkshire, I'm sure they go to London.....X

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Lol, Victoria London

6th March at the Brass Monkey Pub 2 minutes walk from Victoria Station from 12pm

Wow are you really coming along? X

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Waiting for an appointment date in March. If I can't make this one, please keep me informed about the next one and I'll do my best to be there. X

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Ok darling, no problem

Big hugs x

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I only ever went to one PSPsuport group meeting, I was lucky the meeting I attended introduced me to a support worker from PSP ass who was helpful, otherwise I'd have said the 40 mile round trip was a waste of time, far more help and support on this forum xx

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Hey Debbie haven’t heard from you in ages! How are you? And thanks for your very helpful reply! X

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This site is unique in that is provides both practical and emotional support. I often trust the experience and knowledge of the caregivers here above that of the doctors. Thank all of you for consistantly being there, and being willing to help.

I have also felt a true bond with many of you. As you eloquently state how you are feeling, I often want to jump up and say “me too”.

💜👍🏽👊

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Thank you, great reply x

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I have been a "lurker" here for about the last 6 months but never felt able to post as my situation was so different to the rest of you. I am a carer and looked after a lady with PSP for many years.

As a retired nurse, I had never heard of the disease before and, like so many others, my friend was initially diagnosed with PD. PSP had progressed slowly to start with but there was a rapid decline from July 2017 (when I joined the site) until she died in January. The information here was invaluable, as was the information from the PSPA. We were invited to local group meetings but were never able to attend for varying reasons.

I did manage to get PSP listed on her death certificate and her small funeral had a collection for the PSPA. I had already decided before Christmas that I wanted to fundraise for PSPA and to raise awareness of PSP this year but her relatively sudden death (other health issues got there first) has really hit me hard.

Yes I am grieving.

Yes I am angry.

Yes I know this is normal but the apathy I am feeling is extremely difficult for me to understand! I had only known her for a few years but we had become like mother and daughter.

This forum and the extremely knowledgeable people on it helped me know what was in the future so that we could deal with every "problem" as it arose.

As so many others have said, we all owe a debt of gratitude to those who have already travelled this road and continue to pass on their wisdom to those who are starting on their journey.

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