New to PSP

[E-shooter75]

New to the group. Just heard of your existence. PSP is very hard to detect and only recently has my husband been diagnosed after taking Parkinsons medication for the last seven years. He is now in a nursing home and they are aware and understand his condition. I would just like to have contact with people who have loved ones in the same situation and help me to deal with this complex disease.

[Christine47]

Welcome to the group. You will find the support, virtual hugs, and any information you need here. If you are in the UK you have the opportunity to meet many in person. The rest of us seem spread around the world. We are in Los Angeles, CA, USA. Ask anything, lift a glass of your favorite beverage, and know you are among friends who have walked in your shoes.

Christine

[Dadshelper]

Sorry you had to find the site but it's a good thing you did. There is a wealth of information here in the form of back posts (use search at top of page) and just plain ol' asking questions.

Dad got diagnosis of CBD in Jan 2016. I was caring for him a few yrs prior to that and about 1.5 post, he is now in a nursing home. Letting us know what part of the world you hail from will help in getting proper responses to your questions, especially care giving support, medical resources available etc.

Ron

[Kevin_1]

Hi E-shooter75

Echoing the other two replies.

So, Welcome

Dealing with these illnesses is hard, emotionally and practically.So I'm sorry you have a need to be here.

This forum major's on many things... But for me two things primarily:

No question is foolish... We've all had to learn. Emotional support is what folk here do. We all have our different vulnerabilities and strengths. The folk here focus on support and understanding.

Secondly, folk here, like you probably, have had to work out solutions to make care and treatment the best they can be. There is a lot of hard learned expertise here.

I hope this place is helpful for you both.

Waving a welcome

Kevin

[Hidden]

Welcome

A wealth of knowledge and first hand experiences.

Ask away,sorry you have joined the group no one wants to belong to.

Dee in BC

[raincitygirl]

Hello E-shooter and Welcome

There are over 7 years of post-strings here on every conceivable topic related to PSP, CBD and caregiving for same. Let us know if you'd like help navigating the search functions. It's easier, for instance, to look at a particular question or topic rather than say "what's PSP all about?" Gosh - who can answer such a big question!

Also, if it hasn't been mentioned yet, do look up the PSP Association of the UK website: theirs is particularly helpful and well resourced. If you are in the US you may also want to look at CurePSP.

The good news may not be in time for our loved ones right now - but there is positive research being done - and even the "research failures" give valuable information to the researchers. All brain research has the potential to give the special piece that we're waiting for.

Keep in touch, and best wishes

Anne G.

[margh2468]

Hi there and welcome. This site is invaluable. I only stumbled upon it, but it gives me so much support, knowing that I am not the only one out there who has gone through this incidious illness with a loved one. No question is silly, so ask away, as most of the others have said. Hugs to you from Howlong N.S.W. Australia

[Sarah1972]

Welcome to what I believe is an amazing group. I have had nothing but support. This site is so valuable xxx

[LuisRodicioRodicio]

Hi E-shooter75!

I am sorry that PSP has entered their lives but the experience with PD will most likely help you.

I'm not a doctor. I comment what I have read:

There is a type of PSP called Parkinsonism (PSP-P) whose symptoms are very similar to PD in the begining. I have read that in PSP-P there is no fall of the Blood Pressure and in PD it occurs.

The medication for PD (Carbidopa / Levadopa / Sinemet) works for PSP-P for at least 4 years improving normally the bradykinesia and rigidity. Then the medications stop acting progressively and the patient is showing the typical symptoms of a PSP type (PSP-RS, PSP-CBS, etc).

By private internal mail I send you our experiences with PSP-RS with the desire that they may be useful to you.

Hug and luck.

Luis

[Hidden]

Hello and welcome (shame you need to be here).

I wish I had found this site earlier in my brother's diagnosis, as everyone is so kind and there is a wealth of knowledge here.

You are not alone.

Hugs

Sue x

[Beads0122]

E-Shooter,

You have come to the right place. I’m sorry that you need this forum, but confident you find comfort and support here. Although this forum offers information on the disease, insights in managing health care schemes across the globe, and equipment to address symptoms, the most beneficial aspect to me is that I have a global community of caring individuals who understand what I am going through with a loved one with all phases of CBD/PSP. It also gives you an opportunity to give back to others, which is emotionally healing.

I wish you wisdom and peace as you navigate this time in your life with a loved one with PSP.

Bobby

[mwv1]

There is a psp support group that meets at Emory next Saturday morning at 10:00

[daddyt]

Hi E-shooter, Welcome, you've certainly come to the right place with plenty of support and experience.

[racinlady]

Welcome E-shooter, I know you'll find plenty of support and answers here. Also, just having a place to go to when you're not sure about an issue is so comforting. Sometimes, I figure out a problem just by seeing my question in writing. Writing things out adds clarity to a lot of problems, at least for me. I just wish I had found this site much earlier in my husband's PSP journey.

Pat (in the US)