My husband was diagnosed with PSP in Nov.

[Baytalon]

I live in the US, but yours is the first group I've found that allowed me to post in conversations and that's what I need. I am hyper vigilant with him. Every choke terrifies me. Thank you for this outlet.

I'm hot

[easterncedar]

Hi, Baytalon,

There are lots of us from the States here, and this community welcomes everyone. It's a wonderful support group. I say it often: it has saved my sanity more times than I can count. There is practical advice here, and loving support and good humor. It's a place to vent where you will be utterly understood. Whatever comes along, someone here generally has seen it before and can help you through. Although most of the members are in the UK, so the time difference can determine when replies appear, there are members from around the world, and it usually doesn't take too long for someone to chime in.

PSP is terrible, but it isn't the worst thing that happens to folks. It changes everything, but I do have my sweetheart here at home with me, and he is still his wonderful self. He was diagnosed in 2011.

So, welcome. Where in the US are you? I'm in Maine.

Peace, Easterncedar

[Marie_14 in reply to easterncedar]

Easterncedar you are a lovely lady and contribute so much. I know only too well how you are feeling Baytalon. People here are just wonderful. We have all been or still are in the same position. Someone somewhere wil always help you. Welcome, but I am sad you have had to join. Tell us your story and you will get advice that's for sure.

Marie x

[Baytalon in reply to Marie_14]

Thank you Marie. I am trying to cope. Some days I am sure my husband has PSP and is declining, but other days, I think this is just stroke damage. The area of his brain affected by the stroke controls swallowing and his balance issues are primarily on his left side which is also stroke damaged.

[Marie_14 in reply to Baytalon]

Baytalon

My husband kept leaning towards the right and it was his right leg which started to drag first. So it's very possible it is PSP. His swallowing was affected too as indeed all PSP patients seem to suffer. I know how hard it is to know if it's PSP or something else. My husband was fighting a rare Leukaemia when I noticed his walking was not right. It took a long time to see a Neurologist and by then he was in a wheelchair. He went downhill very quickly.

To confuse things further the Neurologist thought he was showing signs of PSP and MSA. Eventually before Xmas he was told they thought it was MSA and another Neurologist said the same in January. He died in February. It was so fast it was actually shocking to watch. So I went through the what if it's??? I am sure we all do to some degree. We want to hope it's something we can find a reason and understanding of. Secretly we all hope the doctors have got it wrong and it's something which can be treated successfully.

Don't bother feeling you have to reply if you are struggling with time and caring. We have all been there. However this is the best site and people on here really understand and help. That is a huge help when you are almost on your knees and nobody understands what youbvarebgoing through. So stay in touch when you can.

Marie x

[Baytalon in reply to easterncedar]

I'm sorry for my tardy reply. I'm finding it difficult to find computer time lately, and I don't like to type when my husband is with me. We live in Virginia on the Chesapeake Bay.

[easterncedar in reply to Baytalon]

Beautiful part of the country, the Chesapeake.

[easterncedar in reply to Baytalon]

I understand completely about how hard it is to find a moment for yourself. And sleep, I hear, is a fine thing. Peace, ec

[HARRADL in reply to easterncedar]

Until they wake numerous times durung the night, have to helped to the washroom at night or for some the night moans and groans. As all know, rest is critical for both caregiver and person with PSP. My mom is now about 5 or 6 years now with PSP. My dad is her key caregiver. It is getting tougher to manage. Time for a reassessment and to get more services. Hang in and be sure to look after you too. From Toronto area, 🇨🇦

[Brenive]

My husband was diagnosed with psp in oct 2016, I have been reading post on this site since christmas and everyone I have read gives excellent advice , lots of experience and stories of good and sad times.you will quickly find you think about the lovley people you have never met .and also find you care about them as they care about how your getting on...Brenda...

[Baytalon in reply to Brenive]

Thank you Brenda. You've been living with this diagnosis just a month more than we have.

[doglington]

Welcome.It really helps to know there are others who know exactly how you feel - the pain and the worthwhile moments.

love, Jean xx

[Baytalon in reply to doglington]

I need to be able to talk to people who know what this is. My sisters are supportive, but they don't know.

[Christine47]

We are also in the US (Los Angeles, CA). I also follow the CurePSP forum (not their facebook page) which is also helpful. Ask anything. Glad you found this site.

Christine

[Baytalon in reply to Christine47]

Thank you, Christine. I have joined CurePSP and tune in to their webinars, but frankly, I always wind up sobbing knowing what's coming.

[Christine47 in reply to Baytalon]

This morning I was thinking more about how we all, in our own way, handle this bolt of lightning that has struck our lives. PSP came in like little cat feet for us. And then the diagnosis delivered like a sucker punch in the stomach. Know that there is nothing at this time that the doctors can do except possibly relieve some symptoms. My reaction was to control what I could -- research, read, diet, supplements, driving to therapies, getting items that would solve an immediate problem, and things that make my life easier. I posted a list on the CurePSP forum. I am the sole 24/7 caregiver. My favorite expression is, "What fresh hell is this?"

As for getting though this, these support sites will help you plan ahead in advance of need. All of us have been where you are. CurePSP does list support groups (either on-line or in person) near you. You did not say how old your husband is or if he is a veteran or has insurance. The US group here can help.

I have been through all the emotions, the frustrations, the anger, even the denial. In public I attempt to fake normal, though our life has been turned upside down. I do know I am walking on thin ice emotionally, so I practice my yoga breathing. There is so much I don't do and should be doing, I am sure. That is when I pray God will hold me in the palm of his hand.

Breathe,

Christine

[Stevewithpsp in reply to Christine47]

Christine,

One researcher from Chicago refers to IT as a "cat out of the bag" disease. I guess he means there is nothing to be done once the diagnosis is made. Very appropriate, in my uninformed opinion.

With kindest regards, I remain, sincerely,

Steve

[Baytalon in reply to Christine47]

My husband turns 63 in June. He is not a vet, but he does have Medicare and a Medicare supplement. He has an excellent neurologist who made this diagnosis early. I pray we'll have a few more quality years.

[Patienan]

This forum has also helped me (the one with PSP) to understand the effect on my husband. I think, and hope that I am more understanding when he is tired but the reality is probably that I still react negatively and angrily if/when he does not respond quickly and happily to my needs.

[Baytalon in reply to Patienan]

I am sorry to hear of your diagnosis, but I am glad you find support here. My husband does not speak to me about his diagnosis. He accepts it, but just wants to go day by day.

[doglington in reply to Patienan]

My husband often doesn't respond to me at all. It distresses me a lot. Do you think he thinks he has responded or is unable to ?

[Baytalon in reply to doglington]

No, I think he prefers to focus on one day at a time...not at the inevitable decline Immediately after diagnosis, we made wills, did the powers of attorney and had the inevitable discussion of advanced directives.

[Nanny857]

Hi Baytalon, in one way happy that you have joined us but sorry you had to. Like you I find myself panicking when W (my hubby) has a coughing fit that seems to last forever, but a spoonful of yoghurt helps to ease it. You will find that as we are all on different time zones, someone will be here to chat with you. Love, Nanny857xx

[judith68 in reply to Nanny857]

Good advise with the yougurt. Txs

[HARRADL in reply to judith68]

Great tip. Thank you!

[easterncedar in reply to Nanny857]

I gave my guy a spoonful of honey the other morning. It was a dramatic cure. It seemed to distract him from his coughing reflex long enough for him to get past it. I don't know whether it will work twice, but a little honey does no harm!

[Baytalon in reply to Nanny857]

Thank you, Nanny. Thank you for the tip on yogurt. We always have it on hand.

[Nanny857 in reply to Baytalon]

You're welcome Baytalon. I'm also going to bear in mind EC'S tip on raising the arm Nanny857xx .

[rriddle]

Choking with eating or choking all the time?

[Baytalon in reply to rriddle]

Choking when eating....swallowing and mostly with liquids.

[Lucy602]

I'm in the US also. My dad had PSP for a short time and passed about 6 weeks ago. I still read posts now and then. It's a big help to know how many others are out there around the world dealing with the same issues. Lots of good advice on here, just ask. There is not just one right answer. Everyone has suggestions, and you just try different things until you find what's best for your situation.

[easterncedar in reply to Lucy602]

Hi, Lucy. So sorry about your father.

[Baytalon in reply to Lucy602]

I am sorry to read of your loss, Lucy.

[Cuttercat]

Dear Baytalon,

We are in Raleigh, NC. Yes, every choke and I jump up to hit his back. There are red spots and bruises from me trying to help him. It's crazy but he's my guy and I, like you, am hyper vigilant.

Where are you in U.S?

Cuttercat

[Baytalon in reply to Cuttercat]

Not far from you, relatively speaking. We are on Virginia's Eastern Shore on the Chesapeake Bay.

[Baytalon in reply to Cuttercat]

Cutter, I do the same thing. The helplessness is overwhelming.

[easterncedar in reply to Baytalon]

When the choking is bad, we raise, or have him raise his arms above his head. It does help and, as he said, it gives him something to do, so it helps stave off the panicky feeling that comes from choking.

[Baytalon in reply to easterncedar]

Thank you for the tip. I'm going to suggest that to him.

[Baytalon in reply to easterncedar]

We have tried this EC and you are right. At least he feels like he has something to do

[easterncedar in reply to Baytalon]

Oh, good. Glad to think we might have helped.

[Baytalon in reply to easterncedar]

You guys have no idea how much you have helped.

[rriddle]

On our list of "Top Resources" for PSP, please find the publication on "Falls and Dysphagia in PSP." This will give you a lot of suggestions for dealing with dysphagia (swallowing dysfunction) in PSP. It's a challenge.

brainsupportnetwork.org/edu...

[Baytalon]

Thank you, I found this really helpful.