New to the site. My husband has been diagnosed with PSP so just joined to find out more. Never heard of it before.
Intro!: New to the site. My husband has been... - PSP Association
Intro!
Written by
Dusty1956
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13 Replies
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Welcome to the site. If you let us know where approximately in the world you live we can tailor answers better. There is a vast amount of info here in back posts (use the search feature top of page) and just plain ol' asking questions or voicing concerns.
Just a few quick points.... get legal affairs in order as to medical procedures wanted or not wanted, appoint someone Power of Attorney and healthcare, any trips or adventures you and your husband may be considering do them sooner then later.
Ron
Welcome
Wealth of information and knowledgeable people here,ask away.
Some info for you
These are things that may help you if have not already done so.
Please get your health directive in order,DNR ( yes or no) peg feeding ( yes or no) any and all financial matters dealt with.
Do your research,do ask here or use the search bar on this psp site,so many knowledge people here with first hand experience.
Try to stay ahead of this disease, meaning that if your low income look for resources that may help with,shower chairs, wheelchair, hospital bed and even a shower and or location of sleeping area if you are in a two level home.
It can be a relief to have a diagnosis but it can also open a whirlwind of questions, what if’s, and a ton of confusion. Ask away, we all trudge along with each step of new normals. No two people are alike but our frustrations are real and on point.
Try to surround yourself with people who can support you, both physically and emotionally. You'll need to look after yourself as well as your husband.
Try to keep normality in your life. No two people react the same way with PSP and there is no single pathway of progression. We kept a watch for infections because it's these that knock sufferers back and speed progression. Good luck. I found great support here
My husband is in his fifth year ( since diagnosis!) and has his first chest infection . Poorly for several days before given antibiotics . But I was interested in your comment that infections can speed up the progress of PSP . He has had a dramatic dip and I’m wondering if this is permanent or he’ll improve somewhat once he’s over the infection . What is your experience ?
I can only describe my experience with Mary which was that she never returned to where she was before an infection which is why I took all precautions that I could (hygiene, infection control, keeping people w hi had colds etc away). In the end Mary gave up and refused food and drink. We respected her wishes and she was put on a syringe pump and passed peacefully last November. 2 years from diagnosis. Kind regards. Rob
Thankyou for your reply ... as he’s getting over the infection he seems to be a little more alert but definitely seems to have had a big dip. I’m very glad we organised carers just before this ... I couldn’t have coped on my own now .
It was kind of you to reply when you have so recently lost Mary
Hi Dusty welcome to this amazing group of people. This is somewhere you can ask questions, share experiences & thoughts or just rant. Whatever you need to do at the time. I found the advice here was so useful and it has been a great support for me. I hope you find it so too.
Hi Dusty, sorry to have to welcome you to this forum due to your husband's diagnosis, but at the same time so glad you have found us, because you will find people who have had and those who are going through the same as you. I found the knowlege, advice, support, friendship and even love that you will find here a big help especially when you are feeling alone, lost, angry, frustrated or just in need of a big (virtual) hug. Just feel free to ask anything, vent feelings, we have all done it, and best of all no one judges you. I lost my husband to PSP just 6 weeks ago after being diagnosed in 2014 and I have to confess this forum kept me sane but most importantly helped me to look after him and make sure he got the care he deserved from the NHS. I hope you find it is the same for you.
Lots of love Nanny857xx
Welcome. My husband has died now but this site was my lifebelt.
All the advice you have been given is really good but I would add that in order to survive the rocky road ahead you need a sense of humour. Do anything you have always intended intended to do NOW. It will get worse. Make memories , record your beloved, treasure every moment.
Love from Jean xxx
Hi Dusty,
My husband was also diagnosed recently. He is 65 years old and so far he is still independent. He always ends up coughing when he eats and hardly ever participates in conversations. He has had a few falls and his main discomfort comes from his eyes. What is your husband experiencing? Is he on medication?
I have read a lot about this condition but I still have so many questions since it seems that every patient will develop symptoms differently. I would like to keep in touch with you, it seems we are at the same stage of uncertainty and disbelieve..
Much love,
Ana
Hi AnaTere Yes it would be good to keep in touch for some support. My husband finds it difficult in walking and drags his feet sometimes. Also finds swallowing difficult at times. His memory is also starting to decline. He is taking medication however has only just started. As you say lots of questions ! Do keep in touch as you say so much uncertainty
