I'm relatively new to this group and have been more of a silent reader than an active member.
My father was diagnosed with psp in 2013 and is 64 years old. He is still fairly mobile but does need some help walking. He does suffer from stiffness, lack of sleep, restlessness, difficulties with his speech and occasional incontinence.
We have seen the disease progress but it has been pretty rapid in the past few months.
We've been reading up alot about stem cell therapy and are considering giving it a shot. We live in Mumbai, India and would have to travel to Europe or America for the treatment.
I would appreciate it if anyone could help me with travel tips, medication tips etc. even with your inflight experience when travelling long distance with a psp patient. Or any kind advice that would help in making this journey as easy and stress free for my dad.
On another note, I must say that I am so happy to have joined this group. Reading all your posts makes my days easier and sometimes,even smile. I admire all of you for your positivity and courage, for we all know how challengingand heart breaking this disease can be.
Much love,
Zsha
Written by
Zsha
To view profiles and participate in discussions please or .
Hey Zsha...cool name by the way is it pronounced Zee shah? I am just welcoming you to this site. I have no experience with stem cell...but we were just talking about it...so I know someone has....anyway welcome. keep the questions, rants, answers coming.....
Hi, Zsha! Welcome. Traveling isn't that bad as long as you are prepared for the incontinence, whether through proper briefs or a catheter. The external catheter arrangement can be very good for traveling, and I'd recommend looking into that if your father can agree. The airlines are pretty good with helping, providing wheelchairs and on-ground transport. Having an assigned assistant with the wheelchair to get us through security was very important. Even if your father thinks he doesn't need the help, I'd ask for it just to ease your way through the lines.
If you use the search function here to look for stem cell posts and travel posts you will find lots of information. Good luck! Easterncedar
Will definitely look into the external catheter. I had not heard of this until now...A catheter always sounded like a painful, uncomfortable contraption. Convincing my dad will be a bit of a task, but I will try...
Yes, the assigned attendee along with the wheelchair is defiantly a good idea!
Hi Zsha, welcome to the group. I haven't travelled by Plane since PSP and don't know anything about stem cell treatment so won't be much use to you but my husband wears a convene so incontinence when travelling isn't a problem. It's called a convene and is like an open ended condom. A tube is attached to the open end this goes to a bag strapped to his leg. It has a tap at the bottom so when we go out I take a bottle with me to empty the bag into when necessary.
I'd like to hear about the trip if you decide to go, as I'm sure everyone else does. I hope it all works out OK.
Thank you so much for the thoughtful welcome message.
I've been reading a lot of your posts, and I have to say, "You Are a superstar!"
A real inspiration to me! I often talk to my husband and mother about you ( and everyone else on this group ) and your stories. But most of all, your spirit and courage.
It feels like I know all of you here without actually haven't met any of you.. A strange yet comforting bond, of some sort.
Hope you are keeping well Jill, take care and a big hug to you!
Welcome to the site. I took my wife on a lot of trips that required air travel (cruises and yes, even to Miami for Stem Cell Therapy). In her early days with this disease, she was just a little incontinent and would have to make mad dashes to the toilet. On two occasions while flying, she felt she just had to go, right after takeoff and the plane was still almost vertical. The flight attendants fussed, but I told them she was insistent, so they allowed her to use to toilet. Was so embarrassing. I finally convinced her to wear adult pull up diapers (Depends). And later I had to start catheterizing her on a frequent basis. When we traveled, it was easier for me to insert a Foley catheter and attach a leg bag.
As for Stem Cells, we went to StemGenix to have hers processed. She was probably in her 5th or 6th year with the disease. It didn't seem to do a bit of good. She lived 2 more years following the procedure. What was a miracle, they also injected some of her stem cells in her lower back (we told them about her degenerated disc that caused her a lot of pain in her right leg and foot). Praise God, a month later ... no more pain.
I think stem cells have a lot of promise and if you have the procedure before a lot of damage is done to the brain, I think it could successfully work.
I'll be praying for you and wishing you all the best!
Chris has a convene [ like nanna B described ]. It makes a huge difference when travelling. We had many tricky times with various bottles. His aim and co-ordination was not great !
Your Dad is so lucky to have a caring daughter like you. This disease tests us all, but in between the anxiety, stress and frustration, you will see and experience things that warm your heart. This site is one of them. God bless you. X
Thank you for your kind words, I do find that kindness and support is what gets us thru our " tough" days..
This disease is truly horrible, and no one can understand other than those who have cared for or lived with a psp patient. So I'm extremely greatful to have found this group, and all the compassion that comes with it.
Thank you so much for the hug, I need it today. B. has fallen once, I have had to deal with noise and dust as we are having a new conservatory roof, the fridge freezer has stopped working, two overflow pipes are overflowing , a light switch needed replacing and I can't lock one of the outside doors. I am now waiting for the locksmith and have had 5 different workmen calling and working here today. I feel filthy, despite having got up at the crack of dawn to have a shower and still have to clean up and do the popping tea.( I pop the microwave ready meals.) Large glass of vino later on for me, I think! X
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
My Warriar gained his angel wings this morning 
Mom with PSP in PA & helpful book
hello I am the wife of a newly diagnosed husband joining your lovely supportive group.
