Psp

[Jazzercise]

Hello my husband has just been diagnosed with psp plus dementia very scared as we had never heard of this awful disease, perhaps you can help me on my journey to cope with the future.jill

[Hidden]

Welcome. No one wants to get this diagnosis. You are in the right place for support and information. Ask any question about anything. Vent when you need to do so.

You didn’t list the country you are in. Depending on where you are will make a difference as to what help is available.

[Jazzercise in reply to Hidden]

We are in Cambridge England

[Dadshelper]

Welcome to the site. As Jeff166 stated knowing what part of the world you hail from will help in getting answers to you in regards to support etc. Search back posts also, there is good info there.

Ron

[Jazzercise in reply to Dadshelper]

We are in Cambridge England

[AnneandChris]

Dear Jill

So sorry you've have the need to join us on this site.

Here in the UK, there is a wealth of information and friendship on this forum.

You will be able to research past posts which can help you through this scary time. We are all on a journey, some further down the road than others. Some, sadly have lost their loved ones already, others are nearing the end of this journey.

PSPA here in the UK holds meetings and you may find a support group near you, which again is a good source of information and support.

So, all I can advise is try to do as much together whilst you can and my mantra is to keep on keeping on.

Hugs

Anne

[Hiking13]

Hello Jill this site is a fantastic support at whatever stage you are at and full of lovely people that are always able to offer advice, answer a question etc so you are not alone . Sending you hugs Sarahx

[LuisRodicioRodicio]

Hi Jazzercise!

I'm sorry PSP has entered your family.

I am not a phisicyan. My studies have a relationship with Physics, Chemistry and the Environment.

By private mail I send you our particular experiences on PSP-RS that we hope you can find useful.

The information I send you by private mail is a compilation of our own experiences and of the people who participate in the PSP chat. The information is made with good will and my best technical criteria that I have been able to contribute, thinking above all in guiding caregivers who have exception made of PSP associations chats and support to face this unknown disease.

Hug and luck.

Luis

[Dickenson2]

Sorry to hear your husband has been diagnosed with PSP.living in Cambridge you will no doubt come under Professor James Rowe and his team at Addenbrookes who are excellent. My husband was diagnosed in 2015 and he has taken part in lots of research at the unit. Just try and do the things you want whilst you are able. Also remember everyone will progress at a different rate and maybe nit experience all the symptoms xx

[Jazzercise in reply to Dickenson2]

Thank you yes my husband is under professor Rowe and is helping with doing some research.x

[Tippyleaf]

Dear Jazzercise

Welcome to the site - sorry you have had to join us but you will find a wealth of knowledge and support here.

My hubby has PSP diagnosed 5 years ago the best thing I ever did in terms of support was join this site 3 years ago. We live in London, UK.

Ask away with any questions you have someone here will have experienced something similar. There is also a search option. Top Right hand screen type in a key word and previous posts on the topic will come up.

Be prepared for the lack of knowledge of PSP in healthcare professionals or the continual mention of Parkinson’s!! PSP association has great resources for families and healthcare professionals- I gave a copy to our GP!!!

Welcome with Love Tippy

Xxx

[SewBears]

Hi Jazzercise,

I’m in the US. Receiving news of this disease is frightening. We’ve all been in your shoes at one time or another. May I ask how old your husband is? My husband just celebrated his 65th birthday. The doctors keep going back and forth with his diagnosis. It’s CBD, no... it’s Lewy-body, no it’s Parkinsonism... a word I never heard of just came up at his last appointment called Myoclonus... all of these are somehow thrown in the mix together. The clinical scans just don’t match up with his symptoms so it’s a mystery how to go about a treatment plan. I’ve been on an emotional roller coaster ride for several years now and it’s extremely exhausting and very frustrating. Everyday is precious though, and I will tell you that I stopped worrying about the future. We live for today, we try to cherish every moment that we have together. Some days are better than others but we do what we can to make the best of it. Laughter is precious. Watch the sunrise and the sunsets together and take lots and lots of photos. Start journaling. Remember that no two people are alike and therefore what someone else is going through doesn’t mean that it’ll be the same for you. It’s too easy to panic over the unknown or what cannot be controlled. Live in the now. Fortunately my husband and I are old enough to have traveled a lot and a good part of our bucket list has been fulfilled. I’m dreaming about a cruise this year so we aren’t done yet 😀.

I like your Jazzercise name so you probably already know how exercise is important. For you as a caregiver and for your loved one with the diagnosis. Keep that up if you can.

Ask away. Someone will have input. This is a wonderful support group and you’ve found a new virtual family. Some of the folks on this site have met in person and have become great true friends. It’s a unique family!

Hang in there and smile. It’ll go a long way.

Sending hugs,

From I SewBears

[Jazzercise in reply to SewBears]

Thank you my husband is 70yrs old x

[Hidden in reply to SewBears]

Read your lovely, supportive response to a recent post - you struck just the right note - just wanted to let you know.

[AJK2001]

I don't think any of us had heard of PSP until we or the one we care for got the diagnosis, so absolutely identify with how you feel at the moment. Glad that you have found this site so quickly, my Mum has had PSP for 5 years and I only found this site last year and it has been a god send. As Tippy said, so many medical professionals have never heard of the disease, so are only able to offer limited help, which is where this forum is such a support, as someone, somewhere has normally experienced something similar and can offer a coping strategy. And it's a great place to vent.

Welcome aboard.