I joined about a month ago, but this is my first posting. My husband John has PSP - diagnosed about 2 years ago. We are not as advanced as most of the texts I have read. I believe this originates in the UK. John and I live in Wisconsin, USA so thank you for allowing us to tag along. I don't always understand some of the abbreviations I've read, so please forgive me going forward if I ask repetitive questions. Trying to learn so much about this disease that never seems to have any answers.
Looking forward to getting to know more of you and your journeys.
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Abrecheisen53
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Hi Alice , welcome .There are some fantastic people here.I live in Texas , with my husband Jim.He has PBP too. This disease consume me , I want to learn as much as I can.I understand your feelings of helplessness .
There is a very active UK presence here - They have known each other for a long time. Don't for a minute feel like you don't belong. Chime in anyway You are here for information and support. It's here. There are people from all over on the forum - Costa Rica, Spain, Australia, India..... and don't forget to use the "search" for topics you need information about. Even tho the posts are older - the information is still relevant - You can grab the lingo you need to ask your questions. Ask away. Take care.
This site is wonderful. Another new one you might follow is SmartPatients. It is through the CurePSP group, a US based organization. Feel free to ask anything.
I live in Oregon, USA. My husband was also diagnosed a little over 2 years ago. He got a early diagnosed in his disease. He is still very active family and friends still can hardly tell there is anything wrong. Being his wife I do I see how he struggles with everyday tasks. I would be very interested in Johns first symptoms and first few years of symptoms if you don't mind sharing. Age ect...
John is 64 and his very first symptoms came in 2012 when he fell from his horse three times. He broke three ribs that year but we just teased him for being klutzy because the horse was usually standing still. Looking back however, I believe those were the first signs. Confusion gradually came later. I actually lost him in Atlanta's International Airport when we returned from Spain. He just wandered off. Major panic that day! We started visiting Dr.'s in 2013 and of course ran the gamut of diagnoses from Parkinson Plus, to Lewy Body to finally PSP. He has had numerous MRI's and two neuropsychological examinations. The last exam showed maintenance in a few areas (mid-range) but an acute decline in cognitive and executive functioning. John has razor sharp focus, yet the attention span of a gnat. I know that makes no sense. John also struggles with everyday tasks and the thought process is extremely slow and often flawed. John falls often and has a cane which he refuses to use if I am close by. John is as active as I keep him or he would sit all day. We walk daily (45 min), do his PT exercises, eat a Paleo diet, take NUMEROUS supplements and drink green tea three times a day. We have traveled extensively once we knew he was sick. I have literally dragged him around the world. Our last trip is in June to Russia. I am so worried that planning this last one is a mistake. It is exhausting now as it is very much like traveling with a child, yet he enjoys it so much. I want him to experience as much as possible before he no longer can. The changes have been gradual, but steady. Only when I reflect back do I realize how collectively significantly they are. I would be very interested in learning more about your journey.
My husband has died and I felt I needed to encourage you to do as much as you can manage. Like you, with hindsight I can recognise changes well before diagnosis. As nothing can be done for PSP I think its good that we continued travelling etc. We travelled extensively.
I will reply back to you soon. I'm going to sit down and write our journey from the first. Give me a few days to get back with you. It's amazing how similar and different everyone seems to be. There is just no way my husband could travel but yet he's on a tractor today. I think my husband has PSP-Parkinsonism one of the different kinds. We started doctoring 2015, symptoms were starting at least 1 year before if not 222
Hi Alice, this probably isn't too helpful, but I've seen a few of our members talk about travel with "care assistance" or "respite vacations" in the past (i.e. companies helping people whose partners need extra care...) Don't know - may just be a British thing, but hopefully someone will notice this and respond with their experience??? Sounds like a HUGE business opportunity for some company, given the increasing numbers of us who are surviving the years only to find ourselves living with neuro-disease - and still want to get out while we can!!
I don't know if those things are available in the US or not. I was going to check into assistance at the airport. Not sure how you go about getting help. Any ideas?
John is ambulatory but he lumbers. If we have to make a connecting flight, I'm sure it looks like I'm dragging the poor man! All I know is that by the time we make it to the next gate I feel like I've run a marathon and I could drink a bottle of wine!
You're right though - it does sound like a great business to get into! Have to take care of all of us baby boomers!
Sorry, I don't actually know anything. But I've seen some of the Brits post things that look like there is travel assistance in their trip. I saw AliBee post something about a group called Revitalise (though that may be entirely different) and sorry, darned if I can remember who's posted re "assisted travel". Most airlines in N. America will have at least some kind of wheelchair-and-aide assistance for travellers who need help (Your John for instance). The customer service folk at your chosen airline should help. What I haven't heard of, is anything at the hotel level - but then, up to now I haven't searched. Maybe if I call a hotel and say "we are handicapped - what have you got for us?" I'll find out more.
Reason to research is, in some ways it will be easier to "bring hubby along" on a trip than to find respite care for him.... So maybe certain locations, certain vacation towns, certain hotels, will cater more to guests who want/need to "stay put" while their spouse tours around... Just a thought!
And if there isn't such a thing here - let's go into business!!
There is never a stupid question. (but I'm so good at asking those anyway )
We are all trying to learn and trying to find a way to make things as best we can for our loved ones.
One of the lessons I was slow to learn was that to be able to make the best of it we need to look after ourselves as carers. Seriously you need to be rested, informed and able to care. So please care for yourself too.
I'm sorry you are both having to face this. It seems an impossible mountain at first - It is difficult but, totally doable.
You can expect good things too. The diagnosis is not the end to warmth sharing and good memories making.
Welcome and just ask about abbreviations... No one will mind. Folk here really do look after each other and respect each others intelligence and the task each of us is facing. It's a good place.
Welcome Alice - You've taken an important step in caring for yourself (which means better support for hubby) - by joining this site. It will be a sanity saver for you!
I too am a newcomer to the group as Bob was just diagnosed with PSP in January (Parkinson’s diagnosis six years ago). Bob, too, is not as advanced as many of the others ... although has had his share of broken ribs, back (with subsequent surgery), dislocated finger (also with subsequent surgery), a number of lacerations, and more than enough bruises! Some days, Bob thinks he’s ‘normal’ but his strength is going and his slow thinking is heartbreaking.
And although many here are further along in their journey, I find myself very drawn here ... a lot of good ideas, answers, suggestions, and, most importantly, understanding!
Look forward to comparing more notes (with yellowmarine too)!
I wrote our journey with psp today. It's way to long for this site. But I needed to write it long for myself. So now I need to shorten it or else no one would read it probably way to much details for this site.
I hope writing out your journey was cathartic. By that I mean, sometimes when you take a look back you often see things that you missed along the way. Too often it's easiest just to remember the hard or bad days. So easy to get sucked down with all the doom and gloom. Some days it's just all too clinical. Joining this group has made me stop and think about John's and my journey. Some obstacles were turned into opportunities; like discussing things heart to heart that otherwise we may never have discussed. We have shared fears, tears and everything in between. It made us realize how precious our time is together. To not waste our time. Some couples never realize that. Most of all, I have realized just how strong we are. I try never to miss an opportunity to tell him how much I love him, because I know that someday that will stop.
I really look forward to reading your condensed version.
Hi, you are very close to a clinical trial in Chicago. A new one will begin in the summer, I urge you to look into the U of Chicago neurology dept. my husband is in the study going on right now, and has had no further progression of the disease. Good luck!
Hi Donna, yes I will look into them this week! Has your husband had any side effects from the trials? Chicago is just 2 hours away - best news I've heard of in a while! Thanks, Alice
John has had no side effects, and actually feels energized afterwards. I would contact the neurology dept as a soon as possible as qualifying for the clinical takes awhile. (Pre-screening, physicals etc.)
My husband did the 6 month clinical trial with the drug Salsalate it is not a blind study. My husband did not progress at all during the 6 months. He has progress since, but very slowly, not sure if it was the drug or his PSP is slower than others. I will get into it more when I send my journey of our PSP life the last 4 years. I will send it soon.
Welcome Alice, you will find good information and lots of support on this forum, I know I have as I am going through this awful journey with my Jim who was diagnosed with PSP 2016. Joyce from Minnesota
My husband was diagnosed 3 years ago with frontotemporal dementia (PPA subtype). He was also diagnosed with parkinsonism. He was diagnosed with PSP last June. We live in Redmond,Washington.
Welcome Abrecheisen, glad you found this site but sorry your husband has been diagnosed with PSP. There is a wealth of info to be found here from those who are at the same stage as you, many who are further along their journey or those whose journey has ended but stay with us. So ask away, and vent your frustrations/anger, this family will be here for you. Lots of love Nanny857xx
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