Summer is coming!! and is vacation time..... - Cure Parkinson's

Cure Parkinson's

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Summer is coming!! and is vacation time.... but I’m afraid 😱 do we pwp go on vacation??

Chicafromchitown profile image

I’m so scared to even make plans, I’m afraid I won’t be able to handle it, I used to be one of those people that could walk, walk and more walk and now I need to have c/l every two/three hours in order to be able to walk normal, not looking like I am walking 🚶‍♀️ in slow motion. My husband wants to treat me to a very good vacation, we like water, beaches, sand, but I want to take my grandkid to Disney World even though he is only 6 months old, and if we end up going, this will be my 4th time, it’s my favorite place!!! But a lot of walking 😲 should I go? would I be able to handle it? Do pwp still goes on vacations? How do you handle it? do you fly or drive? If you fly a long flight how do you do it? I sound like I’ve never flown before, it’s been a while since I’ve had and a longggg!! time since I’ve been on vacation. I get so mad 😠 at myself because I’m not living my life, PD and FEAR have me trapped, I barely leave my house. Any advice, suggestions would be very much appreciate it. Thank you 🙏🏽

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Chicafromchitown profile image
Chicafromchitown
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23 Replies
Malcomx profile image
Malcomx

Go and enjoy yourself. Plan and prepare. Pace yourself too. Have a great summer.

Gioc profile image
Gioc

Although I work so much physically, since going on vacation, I am an authority, :-)

easy!

try to double the problem, even if only in terms of imaginary project.

Imagine taking a longer and more demanding holiday with so many people who don't know you, up and down the buses and so on, places to visit with long walks, bathrooms that you can't find, etc...

Okay?

Now take a look at your problem with your holiday at Disney.

The big problem ate the small one.

Moral: if you reduce your sphere of influence then soon the small problems will seem enormous. We can delay it a bit....

Lionore profile image
Lionore

Personally I wouldn’t enjoy a Disney trip especially with a six month old and especially in the heat and humidity of a Florida summer! That child will not remember anything, but if you want to go, enjoy! Vacations, properly planned, can do wonders for us!

Flying vs driving; either way allow more time and plan around your most difficult periods. When I fly across the country alone I avoid early morning flights, try to get an aisle seat for easier access to the bathroom, try to get out of my seat as much as possible to avoid stiffness and drink plenty of water. I carry as little as possible while navigating the airport. Driving; my other half and I plan for a shorter day even if it means paying for an extra night in a hotel. Stretch your legs at every rest stop.

Figure out a way for you to escape to a cool, quiet hotel room when fatigue sneaks up on you. We did this decades ago with young children every day after lunch; returned in the late afternoon. If you know that you can easily retreat to your comfortable home base, you will feel less anxious.

park_bear profile image
park_bear

A vacation is for the purpose of relaxation. Your husband has the right idea – hanging out on the beach without the need to do anything. It is important to adapt to your new circumstances and recognize what will work for you now.

GinnyBerry profile image
GinnyBerry

You didn’t say when you were last at Disney World. It’s wildly busy now. So expect craziness.

I like DisneyWorld, and I can relax there. But, in my opinion, the key to a relaxing Disney vacation is staying on property and it’s best to book well in advance so you can take advantage of Fastpass. I haven’t been in a couple years, but you can use it to get reserve seating for parades and fireworks, so you wouldn’t feel rushed.

It’s always so busy that no one can walk fast. But the distances are far.

If you have reasonable expectations, not to pack too much into a days, you could have a great time. If you can afford to stay at the Polynesian or Wilderness Lodge, you can take the boat to Magic Kingdom. So, it could be fun to plan to spend most of your time at the resort, and then do a short excursion to Magic Kingdom each day; plan a character meal and a few rides. I would not try to do multiple parks — that gets more hectic and stressful.

I think your grandchild would have more fun next year. My daughter first went at about 2, and she had fun. We would usually just try to do 2-3 rides a day, not the whole park. We understood that we were going to skip a lot.

Chicafromchitown profile image
Chicafromchitown

Thank you all they’re great suggestions!!!

Love you all ❤️😄

richardo123 profile image
richardo123

I live in Nova Scotia Canada . When I went to Florida on vacation a few years ago my pd seemed to be at bay. I took my daily routine of medication but walked for miles. Did not feel like I had pd. When I got back home the pd seemed to have raised its ugly head. I think Florida was a very non stress place for me and that’s why I functioned so well.

Chicafromchitown profile image
Chicafromchitown in reply to richardo123

Richardo123

I’m glad that you got to enjoy your vacation, and that PD behaved.

PDGal4 profile image
PDGal4

I also get anxious when it comes to travel. I just came back from Charleston and Savannah with my husband. We traditionally walk a lot on vacations, especially in cities. The first day, between stress of travel and anxiety in general plus very hot, humid weather, I struggled walking. My meds did not fully kick in. I thought, how will I handle this? Day 2 was better. Don’t know if from winds blowing in cooler, dryer air, being away from day-to-day obligations and activities, or increased physical activity (we averaged 7 miles a day total walking), but for the remaining 6 days, my meds worked optimally. I had very few off times and minimal dyskinesia.

We factored in an extra day to drive, I did rest/nap before dinner, which were late, around 8.00 or 8.30 every night. I have accepted/realized that travel for me, whether driving or flying, will involve a difficult traveling period. But I decided I cannot live my life out of fear. I embrace the concept of impermanence. The off, difficult, stressful day is transitory.

Chicafromchitown profile image
Chicafromchitown in reply to PDGal4

PDgal thank you!!!

Very encouraging now I am starting to get excited just planning it!!!

unsinkable profile image
unsinkable

I would encourage you to go.I just got back from a very long road trip to Disney. I live in Vancouver area,BC, and we powered straight through,to California,left at 8am Fri and got to Disney about 7am Sat. My son and his wife shared the driving, so they could both take turns relaxing, so it was my 3 Granddaughters ages 11-15, and myself sitting in the back seats saying "are we there yet"? lol We went straight into Disney, check in to the place we were staying wasn't until later so we cleaned up,had some strong coffee and stayed until about 2. I can't believe i managed as well as I did. I went 41 hours with no sleep! I am a light sleeper so sleeping in the car was impossible. You can do it! I am more of a sandy quiet beach person,but my kids had asked me many times to go with, so with extra meds,eating healthy as I could, staying hydrated, I made up my mind to have a great adventure! We went for 12 days, and on the busy days ,I ate less and instead of talking 1 sinemet I took 1.5, also sometimes I stayed back and just relaxed . With the support of you Family I am sure you will have a great experience! Take care......

Chicafromchitown profile image
Chicafromchitown in reply to unsinkable

Thank you for sharing your great adventure 😃

GinnyBerry profile image
GinnyBerry

Did you decide to go somewhere? I hope so! I remembered that someone posted a thread on this forum that, when they travel, they actually feel better and several people agreed. Here is that post.

healthunlocked.com/parkinso...

I fly about 4 times per month. The airport is the worst part of any trip. The flying itself is not so bad. I don’t know what airport you will fly out of. Some are much worse than others. I have found that 3:00 on a weekday is the least busy time. Also Sunday evening.

chas747 profile image
chas747

chica

i just got back from Universal Studios Orland and what i did (reluctantly) was rent a scooter. We took the grandkids and had fun. I also went to Costa Rica and had a hard time on the hanging bridges it threw my balance off badly. Since my diagnosis 10 years ago i have been all over the world and i purchased and developed a farm! I had to sell my cattle because the cows got out while we were in costa rica. I am planning on going to Jerusalem and hope to walk the Villa Dolorosa.

Chicafromchitown profile image
Chicafromchitown in reply to chas747

Chas747

Good for you, I was also dx 10 yrs ago, I which I had the courage you have to enjoy life even with Pd. a lot of my friends are against me taking my 6 month old grandson, they say to wait till he’s at least 2 yrs old, the problem is I don’t know how am I going to be health wise. Any adult rides you can recommend since it’s been a while since I was last there. Also when you go to Jerusalem and you the walk the Villa Dolorosa pray for all of us parkies.

Thank you 🙏🏽

chas747 profile image
chas747

I enjoy life because there is someone somewhere who has it worse than me! I tell you circumstances can always be worse ,go and enjoy and tell me all about it.

Kwww profile image
Kwww

My advice would be to think of doing things that make everything easy, even if they seem a bit strange to others. Ie go on cruise and don't get off, get driven to cruise. Very little walking involved. Take a apartment in middle of flat resort near sea again little walking involved. Take a hotel next to a cinema. Go everyday. Picking your accommodation location is key

Chicafromchitown profile image
Chicafromchitown in reply to Kwww

Thank you for your suggestion!!

colourmepurple profile image
colourmepurple

My husband doesn't like holidays so my daughter and I go away for a week every year. We book a cottage in a nice place where everything is on the level, and there is a suitable bathroom for me - a wetroom whenever possible. In the past we have hired a wheelchair as I can't walk too far, but this year I have bought my own wheelchair. I walk as far as I can and when I get tired she is happy to push me around and we get to look at some wonderful gardens in this way. We usually go to the theatre one evening, and dine out most of the others, and, altogether, we have a wonderful time. i know this isn't everyone's idea of a holiday but it suits us, and we have quality time toegether.

Chicafromchitown profile image
Chicafromchitown in reply to colourmepurple

As long as you have a good time.

dfasci profile image
dfasci

I'm 58 and had this for 13 years. I take fourteen pills everyday and most times I'm stuck in a chair. I don't even go out. If you can handle going out, do it while you can.

Chicafromchitown profile image
Chicafromchitown in reply to dfasci

I am sorry to hear that, that’s what I tell myself when I’m lazy and don’t want to get out of bed.

dfasci profile image
dfasci in reply to Chicafromchitown

On the days I want to get something done, I don't eat.

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