Is anyone from the USA?

[BrianM]

This site seems to be intended for people in the UK but there are a few brave souls in the USA, so I have to ask. If you are from the USA, please let yourselves be known here, and maybe we can do something...

[bettynader]

Yes I am from the US, we live in Philadelphia, PA. and my husband Ed has PSP, was diagnosed in August of 2010. We are in a drug study at the U OF P for 6 weeks now. Will run for a year. We are hanging in. One day at a time.

[judy1962 in reply to bettynader]

Hi Betty,

My husband Dave is in the trial at U OF P. We live in upstate NY but get down to Philly every 13 weeks. I would live to meet up with you and keep in touch.

Love,

Judy

[bettynader in reply to judy1962]

That woud be great Judy. Ed has just completed week 6 today.

Our next visit will be in 7 weeks. Let me know when you are in town, and maybe we could set something up.

My email address is [e-mail]. I am also on FB name is Betty DeBenedetto Nader. If you have a FB page send me a friend request. Great to hear from you.

[judy1962 in reply to bettynader]

So good to hear from you Betty. My email address is [e-mail], I added you as a friend on facebook. I dont get on facebook too much. I have found this sits so helpful so I get on here everyday. Dave started in the trial on Dec. 22, 2010. We go down every 13 weeks now. I would be open to coming down to Philly as my husband loves to go to the Phillies game. I will try to get tickets and get a place sto stay and we can plan to meet around those plans. Does Ed like baseball?

[Sugardart in reply to bettynader]

Greetings Betty, My mother has PSP. We live in northern MN. I am wondering what you have found beneficial for what ailments? Kathy

[DougK]

I'm from Green Bay, Wi. & my wife has PSP diagnosed at Mayo Clinic about 3 yrs. ago. One day at a time is all you can do.

[bettynader in reply to DougK]

Your are so right Doug. I hate to look long range, when we get up in the morning my first words to Ed are, can you get out of this bed today. And the fact that he still can makes me so very happy. For however long it may last. One day at a time.

[Sugardart in reply to DougK]

Greetings, My mother has PSP. We live in northern MN. What have you beneficial regarding medications and symptoms? Kathy

[Annette-in-Colorado]

Hi, We are in Colorado where a second support group for PSP and related disorders is being formed. They are wonderful shareing their experiences and helping the care givers stay semi-sane.

[riosenior]

In the US you have a site curepsp.org that you should visit. It is to support people with PSP and their carers etc , has a forum etc

[judy1962 in reply to riosenior]

This forum has been so much more helpful and supportive so thank you UK!

[aliciamq in reply to judy1962]

I agree!!!!!!! Thumbs up for the UK Forum

[tlovins in reply to judy1962]

I agree

[Uscarol in reply to riosenior]

thanks for this link... very helpful

[Sugardart]

My mother was diagnosed in 12/09 at the age of 81 with PSP. We live in northern Minnesota where she currently resides in an assisted living home. We use the medical system in Duluth, MN. I am looking for information in an attempt to deal with this disease proactively so was pleasantly surprised to find this site. Thanks for the comments. It is daunting to say the least. Kathy

[edmee]

We live in New York and my husband, who is 84 has had PSP for at least 2years. He can no longer walk without a large walker because he has NO balance. Currently we are setting up a speech therapy program at Burke Rehab. in White Plains. I do not use facebook or twitter...too time consuming but would love to hear of any news or ideas you have come across at U. of P. Edmee

[BrianM]

I live in Mystic, CT, and my email address is [e-mail]

I was diagnosed with PSP one year ago (July, 2010). I am 57, and although I can already feel myself slipping (I sold my cars, have accelerated my falls, etc.), I will go to my DR again on Monday with a list of questions...

P.S. Thank you to the UK for this forum!

[Lucylidbeck]

Of course we are here. You don't think the UK has the corner on PSP do you? I am in Fergus Falls, MN and from the blogs deduce I am in the early stages and am aware of a man in Park Rapids, MN who is farther along than I. We bpth were diagnosed at Mayo. This site is such a help. Lucille

[Sugardart in reply to Lucylidbeck]

Lucy - I live in Grand Rapids MN.. My mother has PSP and we use Duluth neurologist. How are you doing? What have you found that is helpful? Where do you go for medical attention? Kathy

[granny2956]

I am in stover missouri I have not been diagnosed yet but I do have a lot of the symptoms everyone is talking about.

[aliciamq]

Detroit, Michigan

[NHGrace]

My mom was dxd in 2016 at 76yo. We live in Massachusetts, but she's originally from NH. There are great services at Mass General Hospital, support groups, etc. We did a lot of PT,OT, speech and swallowing, and various exercise programs immediately after diagnosis, but she's declined a lot and is more apathetic now. It was probably going on for 1-2 years before diagnosis.

[johns65]

We live in Minnesota. Good to hear there are more people from the USA as I was beginning to think we were here by ourselves. Love this site and gain so much information from it. We are struggling together with my husbands PSP that he's been suffering with for several years. Nothing gets better but I found that nothing lasts forever either. One day at a time. It's a nice morning in Minnesota.

[mcramon]

Writing from Orlando, FL. My mother has PSP for 2 years and living in my care. I'm trying to learn and be able to give her the best care possible. Thank you all for every caring suggestion.

[raincitygirl in reply to mcramon]

Hi Mcramon: I just happened to be looking at "historic" posts including this one that was started 7 years ago - and saw that you and Krmaier6896 just posted within the last few hours. Because it's an old post, members may not be visiting it and see your comments so you may not get the benefit of multiple responses from folk!

See my reply to Krmaier just below your post here. If it's helpful, great! If not, just ignore it

Welcome, and I hope you find it as helpful as we all do.

Anne G. (raincitygirl)

[Krmaier6896]

I’m from USA. New to site. Have read a lot these past few days. In a desperate mood today...good days, bad days. Overwhelmed

[raincitygirl in reply to Krmaier6896]

Hello krmaier and welcome!

Your post is on a string started years ago. Will you post a new thread telling us about yourself and your situation? There are wonderful caring people here who are so helpful. You are welcomed and supported!

Anne G.

[Krmaier6896 in reply to raincitygirl]

Help me to get started. Thank you for replying & I noticed after I replied it was a long time post. But I’m sure it’ll get me into a discussion with help I need at this time

[raincitygirl in reply to Krmaier6896]

At the top of the page on the left are 4 icons. The first is a little house: this is your home page. Click on that and at the top of that page should be a big space with "What's Your Question?" as the heading. Post your comment there. People often start with something like: "New From Tulsa (..or wherever..!) and overwhelmed with Husband's PSP diagnosis" or whatever seems true for you. Then write a few words about your situation. Members will respond, ask you questions, give info etc.

And if you need help navigating the site, don't be afraid to ask questions about that! We were all new at some point, and everyone wants to get the most from the site.

Welcome, and please feel free to message me anytime. I'm in the Pacific Standard time zone. You can private message by clicking on the icon that shows 2 little conversation bubbles, also on the top left of the page. Good luck!

Anne G. (Raincitygirl)

[Dadshelper]

Live near St. Louis MO, Dad was in Las Vegas NV until he fell one to many times and needed help so he moved in with us.

Ron

[Judyskid]

I am in Texas, but my mom is in Wa. state out on the peninsula. She was totally independent 4 months ago and is now failing out of the rehab that she has been for 3 weeks. They "think" it is PSP as they cannot find anything else. We are desperately trying to find a placement that has skilled nursing for mom and assisted living for dad. Mom is a 2 person plus lift transfer so nobody really wants her and we cannot afford 2 aids around the clock 24/7 in the home. None of the assisted living places offer that kind of help and no way to afford 2 aids and ALF. There is 1 nursing home where they live and dad refuses that option. The nursing home is 12k a month and dad's ALF will be from 3-4. Even selling there home the money will be gone in 2 years. This has all happened so suddenly we are just scrambling. So I found this site and look here for ideas and inspiration. I cannot quit my job and move as I have a mortgage etc..... it is just a crazy situation.

[tlovins]

My Dad has PSP, we live in a small town in north west Ohio.

[Jaeffbee in reply to tlovins]

My mother has PSP and we also live in a small town in North west Ohio!

[tlovins in reply to Jaeffbee]

We live in Wauseon, about 30miles west of Toledo. I am amazed my family doc has heard of PSP and has had a patient in the past with it. Also was amazed that my dad's Urology NP has heard of it. Not many others have. Certainly his family doc never heard of it as he just kept saying "oh he must have had a stroke at some point" for the last two years.

[racinlady]

My husband has PSP. We are in La Grange, CA, a small rural community in Central California.

[RotaMarine]

I am from the USA. My wife has been diagnosed with PSP for 3 years. Original diagnosis was Parkinson's Disease. Managing it.