My husband Chris, who is 68, was officially diagnosed with PSP in summer 2017. Looking back, though, I now realize that I first began noticing symptoms in 2012. Right now, Chris has trouble with choking, constant coughing, weepy eyes from not blinking enough, and being mentally “foggy.” His speech is getting more difficult to understand. The worst, though, is the falling, stiffness, and general physical difficulties. Chris and I have always wanted to go on a cruise through New England and Canada (we’re in the US). A milestone anniversary is coming up in 2021, and I’m trying to save up for that cruise. Many in my family have suggested that we go as soon as possible. Do any of you who have more experience than I do have any advice in this matter? I would appreciate any guidance you might have. Thank you.
New here and need some advice : My husband... - PSP Association
New here and need some advice
Hi Lilybramble
Sorry that you've had to join this club. It's supportive and informative and I'm grateful for all the members but of course none of us really would have chosen this.
I suspect my husband is at a similar stage to yours. We've cruised a bit over the years. At this point in our lives i have been trying to squeeze in as much travel as i can figuring it's only going to get harder. In the past 6 months we've been to Mexico, France, Ireland, southern California and a cruise to Cuba.
France was a family trip so although it was difficult, my two adult sons were along and were real heros. Mexico and S. CAL. were with friends who were also very helpful.
The Cuba trip had been on my bucket list, like yours to New England. We didn't find anyone to join us so did this one as just the two of us. I chose a cruise thinking it would be the easiest way with lots of staff who were used to dealing with the handicapped. I was fully prepared to miss out seeing and doing some things I would otherwise love to do. As it turned out some of the most challenging parts were on the cruise itself. The door jams throughout the ship had big lips that made passage with the walker difficult. The doors were also narrow and heavy so being able to help my husband get through was difficult and awkward as well. All that said, neither of us were sorry we went. We did what we could which was all a lot more fun than sitting at home or visiting doctors.
Guess my bottom line is yes. Do it sooner rather then later and if you can bring extra support even better. Just know it may be that you just can't do it all but you can enjoy those thing you can do. Since tese last few trips I've decided I won't be traveling with my husband again unless I have friends, family or paid help along.
So I agree, take that trip as soon as possible and celebrate your big anniversary early. You can celebrate double if things work out for the better when the true date arrives.
Thank you, bsilverman, for the advice and for your last sentence. It’s a lovely way to look toward the future.
I agree with bsilverman. Do it now if possible. Call the cruise ship line to find out about accessibility for handicapped people.
Is Chris doing physical and speech therapy?
For the weepy eyes I use an eye oniment at night on Larry. It’s 3% mineral oil and 97% petroleum jelly. There are a number of over the counter brands. Makes his vision blurry which is why I do it at night. It helps with the tearing by coating the eye with a protective layer to keep the cornea from drying.
Thank you for the info on the eye ointment. We’ll give that a try tonight. I know Chris would feel much better if the weeping were lessened.
I forgot to tell you how to put it in. Pull the lower lid out and squeeze an 1/8 inch in. Good luck on making it an 1/8 inch. Whatever I get in goes in. In warm weather it flows very quickly. In the winter it is more solid.
Travel as you can now, 2021 is a ways off still and unfortunately these are progressive diseases. I've never done a cruise so don't have much info but I am sure they'd have some type of handicap assistance on it. Call them and ask questions, tell them your situation etc.
Ron
Thank you.
Good Morning Lily
If your hubby is up for the trip now - then I would go as soon as possible.
PSP travels at its own speed and each person seems to be different.
It might be nice if another couple or family member could join you in this adventure for support if needed.
Wishing you the Best and sending Hugs - Granni B
Thanks, GranniB.
Welcome Lilybramble 
Very sorry about your husband's dx but good for you planning fun things and keeping life interesting!
I agree with all the others here: you never know what the next thing coming is, and downturns can happen without warning. And much as BSilverman said, when the big anniversary does arrive you can have a party and show slides of the special trip (and you'll both be looking younger and fabulous, lol!)
Hugs and best wishes xx
Anne G.
It's comforting to be part of this community. I appreciate everyone's support and advice.
Dear Lilybramble
Welcome - I agree with others suggestions go for the travel adventures create new memories now and when travel gets more challenging you will have wonderful memories. My hubby diagnosed with PSP in 2013 but like yours clearly had symptoms for 5 years previous.
I think overseas travel is now off the agenda for us but he managed until last year.
Planning ahead and asking for assistance is vital to any travel but I have always been surprised how helpful people are.
Hope you find this site helpful - has been a sanity saver for me!!!
Love Tippy
I have found many strangers to be very helpful and compassionate. It's nice to see the good side of people.
I heartily agree with the others. My husband is in his 6th year and we just returned from a driving trip in another state so he could attend a family reunion. He said it was great, which made it all worthwhile. It really wasn't much different than life at home. We did a three week trip a couple of years ago. Lots of wonderful memories and never a dull moment. And Tippy is right -- plan ahead, make your list of needs, and total strangers will offer help.
Enjoy!
PS Even though my husband can walk with a walker, we used a transport wheel chair. That makes it easier for me. Every room I reserved was for the handicapped and I even took along a portable bed rail.
We've been taking both the walker and the wheelchair when we go to anywhere more complex than Walmart. We bought a medium-sized SVU just before the diagnosis, and that seems to be a very happy accident.
Do you do the "back in, bum first" style of entry to the car for him? We had to retrain hubby to approach such tasks differently for safety
Dear Lilybramble go as soon as you can. A constant regret for me is I haven't managed to take my Mary on a holiday to China and now her condition has deteriorated which makes such a trip impossible. She went down hill from September last year after showing first symptoms in March. Time is precious. Thinking of you. Rob
I'm so sorry you won't be able to take Mary on her dream trip. It must break your heart. My thoughts are with you and Mary.
Hi Lilybramle!
I am sorry that PSP has entered your lives.
By internal mail I send you our experiences with PSP since 2012.
Each patient is a world and, within a set of symptoms, each patient makes a similar but different path.
In our case, after 6.5 years from the first specific symptom we currently need the wheelchair continuously. This does not stop us from going shopping, have a walk for many days or making 1.5 hour plane trips, but it should be noted that this means accumulating an important fatigue from the patient who recovers in 24-48 hours.
In my case I would not dare to do a cruise in 2021. If the patient is in controllable conditions, if during the cruise the patient can be conveniently cared for and, finally, the cruise takes place in calm waters (fi- Mediterraneo) I would do the cruise trip the sooner the better.
Hugs and luck.
Luis
I've noticed that Chris tires much more easily now. We try to plan for rest times.
First of all sorry you are on this site but you will find it so helpful as the disease progresses. If you have the finances do the cruise now. One of our last holidays was a cruise as I thought if John was tired he could rest in the stateroom. It worked really well and we used the American cruise line Oceania which was excellent and they have smaller ships. Pauline x
I also like the idea of having the stateroom for rest whenever needed. On cruises you can do as much or as little as you want and still see new places and meet new people.
I agree with everyone else. Go away NOW! There is no law that states anniversaries have to be celebrated on the actual day. If it's special, then why not have lots of celebrations. PSP will not wait for you, you have to keep one step ahead, where you can. This is one of them. I frequently took Steve to South Africa from the UK, until it got too hard, sometimes we even managed to get there, a few days before PSP turned up. Very special days. Enjoy your cruise, but make sure you get all the assistance you can. Every aircraft company will offer wheelchair assistance free of charge. I promise, it IS the only way to fly! It's the only thing I miss about PSP.
Lots of love
Anne
That's quite a long flight to South Africa, isn't it? I'm glad you had the opportunity to make the trip.
Hi Lily, I definitely understand your situation. Bob and I did the first trip on our retirement bucket list last summer. We did a land/cruise trip to Alaska. It was a wonderful trip, although certainly not the trip that I had envisioned it would be ... no all-day excursions (needed naps) or evening shows (9:00 bedtimes), but it was beautiful and an adventure we shared. At the end of November, we will be flying to (from US) and cruising in Australia and New Zealand. It will be a two-week cruise and I have no idea how we will do. We have chosen excursions that are less than four hours and have minimal walking, as Bob is now using a walker; and who knows what the next three months will bring as he has already mentioned “how do we go about getting a wheelchair?” I have thought numerous times about cancelling this trip as I so don’t want to be “stuck” on a ship for two weeks wishing I was home. But I know that I could never disappoint Bob by cancelling it and I will go with the mindframe of making sure that he has a wonderful adventure.
I agree with everyone ... “Go now!”
xoDorie
Good Morning - Get the wheel chair if at all possible - I recently missed an important day in my granddaughter's life because I just could not manage my cane or walker that morning.
I was a Cub Scout Leader for years and yet I was not prepared . . .
Go Have Fun & Be Prepared! - Granni B
Even if Bob has less energy by the time your adventure starts, the views and the activities onboard will be nice. And you'll have that time together.
Hi Lilybramble,
By all means whilst your husband is able, go ahead with your cruise. It’s the safest place you can ever be as it has lifts and onboard doctors and help 24/7.
I took my husband (translate, dragged him) on a cruise on the 2nd year of his diagnosis and despite his sneering on cruises he actually enjoyed it.
As a matter of fact that’s the best travel option for people with PSP, as long flights and high altitude don’t mix well.
All the best,
Mx
I had to be persuaded to go on my first cruise, too. I thought it would be confining and boring. I was so wrong! Thanks for the reminder about 24/7 medical help. That's another great aspect of cruising.
Hi there, I, like the others on here say Go, Go Now. Leon and I sold everything and hit the road (Grey Nomads) over 8 years ago, travelling Australia in our Winnebago,(Motorhome) Leon had the best possible 7 years of travelling, as in the 1st year I realized something was amiss, looking back, like most, I can see earlier signs, had him to a Neurologist who said Parkinsonism, ?? wrongly diagnosed as with lots here also, 3 years later I actually worked out that he had P.S.P. incidious, horrid illness. Leon passed on 16.06.2018 after going into care for 4 months. I still think he had the best last years of his life travelling, he would have gone a lot earlier if trapped in 4 walls. I wish you all the best, but seriously, think about a wheelchair, it minimised the falls for us immensely. Cheers and Hugs Marg H, Howlong N.S.W. Australia
One year ago, my husband and I stole a short vacation to Universal Orlando for the first real vacation we had in 20 years. We navigated the park with the rental of scooters, well worth the price, and had a wonderful time. In one year's time, that would not be possible. I am glad we went when we did.
I'm glad you have those memories.
Go soon - BUT only if your husband is truly up to it - do not take unnecessary risks. My advice would be, based on what you wrote regarding his symptoms, to take another capable adult family member along. Also, if you do a cruise pay the money for a larger cabin for mobility and usually larger bathrooms. Do NOT leave your husband unattended at ANY time. Speaking from experience. My late mother had PSP and we, two of her children, took her abroad 4 months before she was diagnosed. She fell once on that trip and had other issues. Unfortunately it was her last trip after diagnosis. Travel while you can, but only in a thought out and safe manner for your husband. Best to you both.
I’m sorry for the loss of your mother.
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