I’m 77, female,diagnosed since 2015.I would like to think of my PD as having slow progression, since I’m independent with daily tasks. What I have to accept is that those activities take longer to complete and that my partner is at the ready to do what I find difficult; everything from opening a jar to driving me to the store or doctor appointments when I don’t feel that great to wiping up a spill. As retirees we are blessed to be able to move at a relaxed pace in a home adapted for safety. As PD progressed, however,I find myself limiting travel more and more. I stopped using public transportation several years ago when I fell in a subway car because I wasn’t holding on when it started and couldn’t find a seat. Several subsequent falls I was able to attribute to tripping on cracks and such, but the last one occurred because my legs just gave out; probably due to dehydration.im at the point now where I don’t feel safe away from home other than driving very locally in good weather. My adult children don’t live in the area and one is a five plus hour flight away and my partner is afraid to fly.. Until this year I’ve flown alone, with increasing supports like wheelchair assistance in the airport, first class seats and a car service meeting at baggage claim. The problem is that when I finally get to my family I’m an invalid; just want to stay in bed. I finally had to admit to being unable to fly which sadly means that FaceTime calls and the family coming here will have to suffice. Sad, yes, but I feel relief. It’s so difficult to accept my limitations and give up the facade of telling my children that everything is fine. Who am I kidding? Can anyone relate?
When to stop traveling alone?: I’m 7... - Cure Parkinson's
When to stop traveling alone?
Lionore , I can completely relate to your situation and I am 59 years old, 18 years younger than you. Considering my situation, you're more fortunate, if that is indeed a thing.
I would say that you just take one day at a time and make the best of it. Be grateful for the wonders of technology that allows us to remain connected to the outside world and to our loved ones.. In short, just be happy to be alive without a looming deadline on your existence like some cancers and diseases of the heart or other organs.
I hope that this helps.
Hello Lionore
I think it has been along time since we talked last. I am 76 and I spent 30 years flying all over North America , renting cars ,staying in hotels, making presentations , arranging contracts etc alone . I was a seasoned traveler who knew all the tricks, ways to get on flights that were already full and get a room in hotels that were supposedly completely booked solid and drive out of an empty car rental lot . BUT I would not attempt to travel by plane alone now. I think that you made the right choice. Should I try to travel alone I think that the increase in stress would bring on the PD at the very worst time. I was pondering taking a trip by train through the Rocky mountains , a relaxed scenic tour but not alone and only if my care giver (wife) agress . I gave up driving 4 or5 years ago and maybe you should consider it also.
Gymsack, partner and I are still contemplating traveling across the country (US) by rail but it’s really a long time to be on a train even if we’re in a private room. I proposed that I contribute towards son and family fly here. As for driving I’ve set some boundaries. Avoid left turns, tricky intersections, freeways, unfamiliar places and never drive if not feeling safe. Signed up for paratransit, Uber, etc. Fortunately I live with a great guy. I’m grateful to you and others in this community for providing a roadmap for accepting loss.
Lionore, I understand your situation completely. Sounds much like me and my husband. I have PD, am 75 and still get around the house but have had a few falls. My husband steps in as well for anything I have difficulty with. Our daughter, her husband and our 3 year old grandaughter live a direct 2 hour flight away and I decided to go visit. My husband hates to fly. Now that I’ve purchased the ticket, I am starting to worry about falling, being exhausted and stiff etc. I have used wheelchair assistance to get to baggage claim or between flights in the past and it’s awkward. I worry their shower won’t have a safety bar etc. My balance can be precarious. I use a cane. I really get the pretending I’m fine. She wants me to be fine. They are all very active and on the go. It will be a challenge and my husband thinks I should stay home. It might be the last visit. I agree. Thank goodness for FaceTime.
Hi, I recently purchased an "electric tricycle" that is foldable, I love it...and it is approx 33#. when my legs are fatigued or freezing kicks in, this is a life saver.
Could you say a little more about this. It sounds very interesting.
PMATE ES32 on amazon..electric 'scooters."
sorry, It's TOPMATE..notPMATE
Wow so much like my story! Last visit I purchased a grab bar that clamps over the side of the tub; not ideal but with using my quad cane it’s crazy how much my functioning varies during the day. When dopamine levels are high I feel like I can do anything but when they drop look out! Don’t want to be alone at 38000 feet!
We should have dopamine gauges, like gas gauges, to let us know when dopamine levels are low...as that is the biggest "hold back" of me goi n g out..thst I will freeze or my gait will suck. I vary..with my video appts., with my neuro...some times I can hardly walk, and there are times i am doing jumping jacks for her...it's the UNPREDICTABILITY that is frustrating.
Goldencbc, you are less likely to get stiff after a two hour flight than cross country, especially if you’re able to stretch your legs. Your issue like mine is not having enough energy to keep up with your active family. Most people our age want to protect our family members from facing our decline be it from PD or another condition. I am mourning the old me who like Gymsack could travel anywhere with ease. I need to be grateful that thanks to suggestions here I’m doing ok.
58, had PD nine years, l-dopa starting to fail. I won't drive further than 30 mins, and then only at certain times. I got a friend to run me to Manchester (90 mins or so), but also to be with me in case of a rigidity flare up.
Yup, my world is getting smaller. Ad hoc trips to Switzerland are a thing of the past. Just hope I've enough juice left in me for one more.
After all, it will only have to be one-way.
There are other tx's around the corner..the "pumps," new meds that may be out at the end of the year, so there are exciting things out there...that will help us.😀
I appreciate that CJ, but as time goes on (60 years now since the "gold standard" treatment that was L-DOPA, and I'm starting to suspect it's more 9 carat than 24) it feels like I'm hanging on just for the chance of a lottery win. That is; a true "cure"...not a "slowing of progression", "reduction of symptoms" or other incremental improvement that will have me financially beholden to some big drug company for regular daily doses.
Eventually the suffering outweighs the hope.
I understand your feelings. Like you, I'm used to traveling alone as my husband is afraid of flying. The flight is 8 hours long and I have to rely on the kindness and helpfulness of the flight attendants. I tell myself I can still do it and go visit mum who is 88, but I can also feel the end of my traveling approaching.
I certainly can relate. My daughters are closer to me than your children are to you . I can drive it in about 3 1\2 hours and I am younger than you , so I think you are doing really well and are awesome!!
I have anxiety about taking the trip and sometimes just need to lay down when I arrive. They took me to a professional ball game for my birthday and it was a lot for me to walk all that distance and I needed to hold on to my daughters arm for part of it..
It is odd that sometimes I feel grate and can easily do things and other times I just don’t.
I think when they see me on the not so good side it scares them and I don’t like that. I have thought about flying to visit with my brother but I don’t know if I should.
So no answers here but I can relate
This post really inspires me. Thank you so much for posting about your travel experience. I have hopefully a few good enough years to get my travel bug on. And I'm going to do as much as I can while I can. Grateful for whatever is still possible.
Stanford Plasma Study
Total newbie to PD
When family and friends want to deny you have PD
50 YEARS ON
