Diagnosed with psp what now?

[BLUEPSP]

hUSBAND DIAGNOSE WITH PSP TODAY. Where do I start how do I support him. What good tips can you give? What to expect of the condition, what can be done to help him cope?

[AnneandChris]

I am so sorry your husband has had this diagnosis. However, you will find a wealth of information and support here both from those caring and those who have cared.

It would help to know where you are in the world as there is a wide gap in how this devastating disease is dealt with. If you are in the UK, then the NHS will be invaluable from Consultants, GPs, District Nurses, OT, physios and speech therapists.

Enjoy as much time as you can together before PSP starts to take hold of your loved one. Get your affairs in order with Lasting Power of Attorney for both wealth and the health and welfare one too. I know it sounds daunting but it is much easier to discuss these and action them while you can.

Above all, look after yourself as well, as you will need to be able to care for your loved one.

If you need to rant, then we are are hear to listen and support.

I'm sure you will have other replies from carers who are in a similar position.

So keep on keeping on.

Hugs

Anne

[Kevin_1]

Hi

And, welcome to a very friendly, warm and supportive forum.

Anne has already said it all, but I will add:

Read the PSP Association documents on their site. They are superb and will give you a good grounding about the illness, resources etc.

There is a huge wealth of experience , info., and compassionate ears here... Ask about any specific, or even vague concern and, you will get well grounded replies.

Lastly, the diagnosis is both a shock and a horror, I remember well my thoughts that the world had ended and that I could never cope, I was wrong, it is do-able and there is so much left to share with those we love.

So sorry to hear your situation. We all get through together here.

Warmly

Kevin

[Dadshelper]

Welcome to the site. Excellent advice has been given, I would add to read up on various topics using the search feature at top of page. Just type whatever topic you can think of.

Ron

[Aprilfool20]

I have CBD, the sister/brother disease. If you can find a support group join it. They will have a wealth of information. Best wishes, Jayne

[Dusty1956]

Hi my husband has just been diagnosed too so am in the same position as yourself. Just trying to find out more but it seems symptoms vary from person to person. Good to have this forum ! Take care

Hug

[AliBee1 in reply to Dusty1956]

Good luck. This forum will help you more than anyone xx There has been very good advice given to BluePSP so read the relpies to her. The PSPA association also have a help line. Love AliBee xx

[Railfan]

I have PSP and am stage 2. PSPA and CurePSP in the US both have a lot of good information. My wife is my caregiver. We interact with and read these forum topics on a near daily basis. You will see lots of sad information about the PSP Warrior here but don't let that turn you away. As you read the questions and get to know everyone better, you will come to see that we are all part of a greater family. We celebrate the highs and cry with the lows. We have smiles and laughs but also sympathy and tears. But for certain, this is a place to vent frustration, and have a moan in a safe environment whenever you need to. No judgement here.

So sorry you had to seek us out but welcome to our family.

Tony

[AJK2001]

So glad you have found this site, sometimes it's hard reading and I didn't want to know for a while but then I came back to it and it was an absolute life saver for me, looking after my Mum. The people on this site are far more informed about the condition than health professionals tend to be and offer practical advise in how to overcome challenges and emotional support when times are tough, but also love to share the good times with you.

Take heart. xxx

[AliBee1]

Good luck to you both. I cannot add to the advice given already as it is excellent as per usual but if you are in the UK then the PSP Association has a helpline. Love AliBee

[hero54321]

During the years that my wife had PSP (she passed away about 1 year ago), I learned that while there are some disabilities that are common to all who have the disease, symptoms often vary from patient to patient. You may wish to explore his participation in any clinical trials that may be ongoing. Try to cherish each day, and if you get frustrated at his gradual inability to live a normal life, remember to blame the disease and not him. Do not hesitate to seek help and support, as you will increasingly need it, I'm sorry to say. Try to maintain hope and a positive outlook. We all are looking forward to the day when an effective treatment is found, hopefully sooner rather than later. Best of luck, God bless.

[daddyt]

Nothing more to add really, that hasn't been said in the previous responses. DO take some time and read through the older posts and make more memories that you both can share. Buckle up, this will be a ride like you never been on before.

Tim x

[SusieTess]

So sorry for your husbands diagnosis....we are in this together even though we progress and have different experiences....for an in-depth, first hand guide as to what our loved one is feeling I recommend reading The Progressive Supernuclear Palsy Chronicles by Tim Brown...he participates in this forum and as the patient, he shares so much with us on his day by day routine including how he feels which helped me to a better understanding of how to respond and deal with this horrible disease....I found it very helpful from the patients point of view.....

All the other replies are greatly informative and will be there for you as your journey goes forward....remember you are not alone...

Sending hugs,....Kathy

[ncgardener799 in reply to SusieTess]

I live in US is Tim Browns book available here?

[SusieTess in reply to ncgardener799]

Yes...it’s on Amazon

[hero54321 in reply to ncgardener799]

It's available on Amazon.

[ForkLover]

As you see from the responses there is a wealth of information available here. My wife passed away last November and looking back the recommendation I can make is to never wait to do something together. We had planned to go back to Italy for our 40th and I considered going a year early but we didn't and she could not travel a year later.

[hero54321 in reply to ForkLover]

Great advice. I keep thinking of the "should have done" things also.

[Hidden]

Sorry you are here but you could not of found a better site for help with this journey. Ask away someone is always on line 24/7.

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.

Dee in BC

[BLUEPSP in reply to Hidden]

Thanks for advise