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Topic Traveling success, so far...big test next week Go to previous topic Go to next topic Go to higher level

By jcoff012 On 2013.10.09 17:44
Well, we made the trip to North Carolina with few problems; most noticeable were the ones he had back at home...extreme exhaustion, irritability, etc...from overdoing, etc. Next, this weekend we went to a Hula Festival in Sacramento and then drove the three hours to Lake Tahoe. We had a beautiful hotel ON the lake (it was less than 200 feet from our room!) We gambled, went to a movie, had nice dinners and lunches out...Had two problems we have yet had to face...

We went to dinner at The Chart House and all was going well (no alcohol, so cannot blame it on that), when suddenly, just after ordering dessert (my first dessert in seven months!), he looked pale and said, "I HAVE to leave, Jane." Got up, stumbled upstairs and left me to pay the bill, etc...I waited the five minutes to bag up the dessert and left, too...when I got to the car, less than 5-7 minutes later, he had the seat reclining and was just staring at the roof of the car! I had 911 ready to dial on my phone and a waiter walked me to the car to make sure things were ok...He perked up, said he felt better...so, we sat there for ten minutes, then drove the 20 minutes back to the hotel. We both sat up a few hours more and in the morning he seemed fine. Hungry, but fine...odd...Then, on the way home he became highly agitated by a driver whom I didn't think "did" anything...he is usually a very passive driver...I uncharacteristically kept my mouth shut on both issues and let them play out...

We now are readying for the trip to Maui. We will be gone from home for 12 days because I convinced him that we needed to rest the day before and when we got home, instead of driving the three hours each way. We are going first class for the conveniences, too...our hotels/condos are right on the beach, so walking will be simple and easy, too.

Now, the reason for the post...for those of you still able to travel, should we be forewarned of anything? I have already spoken with concierges at both of our condos and have the phone numbers of the nearest hospitals, etc. I want him to pack duplicate meds to keep in the suitcases and in the carry on...Any other suggestions? We always have our insurance and now Medicare cards and doctors' phone numbers and I carry a list of our meds and prescription numbers in my purse. Hopefully, this won't be our last visit to Hawaii, but I feel as if *he* thinks it is, so I want to make him as comfortable as I can...any suggestions would be wonderful, as we leave for Sacramento next Wednesday, Maui on Thursday...Mahalo (thank you!) Jane

By carman96 On 2013.10.09 23:24
Jane, I am excited for you! Sounds like you have thought of everything. Maui should be wonderful!
The problem that I had when we went to Kauai in April was I didn't get a handicapped room and my husband had really hard time with the bathroom and shower since they didn't have handrails! He also found it really hard to walk in the sand.But sounds like your husband is still getting around pretty well. It's good that you still get to travel.
One question though. You let your husband drive home from Tahoe the day after his "episode" in the restaurant? This sounds dangerous to me. What if it happened when he was driving? I guess you know his limitations but still it seems kind of scary.
Have a really great time in Maui. Aloha!

By jcoff012 On 2013.10.10 16:22
It was a bit scary, but I did almost the entire trip home...especially through the mountains...I may be accepting of the disease, but I am not dumb...lolol...Well, maybe!...Yea, I am...He didn't even try to say no when I said I was driving home...he knows...and, yes, he is pretty active and high functioning...

Although, I am glad you mentioned the sand...hadn't thought of that...maybe we will limit it to early morning and late evening after his naps he takes! lol

Hugs and I, too, am glad we are finally going...this dumb disease has certainly taken over our retirement plans...been almost five years since we have been to Hawaii...when one lives on the West Coast, it isn't all that far (6 hours), so we used to go several times a year.

Jane

By parkinit On 2013.10.13 22:49
I wish I knew what that was, Jane! This has happened several times to me when my spouse was able to walk out (he is confined to a wheelchair now). He would leave me to take care of everything and he said, "I felt really bad." And, he, too, would be really pale, so I knew he really didn't feel good. I took BP, temp, oxygen level... all were normal.

I don't think anyone has mentioned this on the board before, so thank you for bringing it up.

By LOHENGR1N On 2013.10.14 00:39
I don't know for sure what made Him feel really bad but I can take a guess. Dining out can be stressful. No matter how well we plan our med's. You went to the Hula festival, then to lake Tahoe. You just got back from NC. It takes Us longer to recover from a trip then pre-Parkinson's Disease. (call it trip lag like Jet lag).

Okay now a peek inside a Parkinson's diseased mind.......All righty now, med's seem to be working well We both enjoyed eating out before so this should be a snap! Salad and bread have arrived all's well...glance over get a pleasant smile from significant other......humm what's the reassuring smile for? I feel okay. Gee it's taking awhile for the meal to get here, re access how the pills are working. Other person see's Us fidgeting asks the question.....how are you doing? P.D. mind = okay the med's must not be up to snuff She/He can see it!!!! Just get me through meal please that's all I ask! (still in a P.D. mind) Gosh We've been done eating for hours now what are they waiting for?! Waiter ..would you like Desert?!?! Mind.... He should have asked that yesterday right after the meal! Okay desert damn what's taking so long (tick, tick, tick times running out med's aren't going to work for much longer) I'm holding on by the skin of my teeth here! Along with the narrative we've got a sub-routine running telling Us all or symptoms are being magnified so all can see them. We stare down avert gazes because we think everyone is gawking at us. The hushed conversations become people remarking, whispering about Us. Stress building up as we try to hold on to get through, it reaches our fight or flight level and we have to go, just get out of the place. Voice from outside Us are you okay? Hell no I'm not okay I'm stressed to the max Parkinson's won this event! But I can't take time to tell you, I've got to get out..I get up and leave everyone and everything...lurching for safety ....ah there's the car! Safety at last! The next morning I'd rather forget the personal hell I went through the night before.....I really don't want to re-visit it. I'd have to go into detail of feelings and perceptions which trying to make me feel better would be responded to with reassuring oh no one noticed or I though you did fine. Here's where We Patients fail ourselves We don't want to relive it we don't want to explain or can't explain we may mumble I'll do better next time or something like that but.....most times P.D. wins. It sucks but it wins. We can't explain because We're using every ounce of energy fighting through these events. We can't string sentences together We can't divert our tunnel sight fighting to get through what's happening STRESS the stress of the event the stress of hanging on trying to keep it together and the stress of explaining or the ramifications of not explaining ...frustration of ourselves and our loved ones. And We are drained by it, sapped of energy. Add to it stubbornness or lack of experience being new to this and not realizing it's draining effect we try to drive? It's easy to see agitation again pop up we haven't processed the stress and agitation of the events the night before.

Well that's my guess for what it's worth and a peek inside the workings of a Parkinson's diseased mind. Take care, best of luck and hang in there.

We're all in the same game; Just different levels.
Dealing with the same Hell; Just different devils

By jcoff012 On 2013.10.14 11:20
As always, Al...wow! I do believe you hit the nail on the proverbial head! If I had to guess, that is EXACTLY what was going on...

In no way is having had cancer the same as dealing with PD, but the aftereffects of having to wear compression stockings (especially wearing shorts in Hawaii) a similar mindset as far as the "is everyone watching and staring at me" feeling. I will relate what you said to that. I have had self-imposed feelings like that, too. You have given me a great insight and I do humbly appreciate it, My Friend. I CAN relate to those awful feelings of people staring and wondering, etc..and I can learn to be more understanding and patient because of your explanation...

Again, thank you...I wish I could take this awful time from anyone with PD. Please KNOW people are NOT staring...Funny, but one thing my beautiful doctor told me early on..."Jane, do NOT let others define your life. Do NOT think everyone is staring and whispering...what you need to remember is that people are so wrapped up in THEMSELVES, that they MAY glance, but they are too self absorbed to dwell on YOU!!"

Thank you for reminding me of her words...I hope that sometime I may be able to help you, as you help so many.

Love and hugs to you and everyone, Jane

By parkinit On 2013.10.18 16:45
Jane -

I'm not for sure where you are at in the PD disease, but the stress of all these trips stacked up one right after another would be very stressful on a normal person and a person with PD, well, let's just say, as Al so aptly portrayed, don't handle stress very well.

I read Al's response and your original submission to my PWP, and he noted that we never would have ventured to plan so many trips one after another because of it's effect on him.

By jcoff012 On 2013.10.28 11:46
Back home...more when I unpack and get over the jetlag...we also are going to pickup Nigel early...we did Facetime one night and now Carl NEEDS to see him! lol

There were ups and downs, but mostly ups...we were both surprised it went so well...mostly, his back pain on the flights...but, going first class was the smartest thing we did...the extra room, legroom, the first class lounge, early boarding and attention really helped. I quietly told the flight attendants of the PD, and both coming and going at least one had a family member with PD! So, they treated him well and doted on him...it was very kind and very sweet...Gave me a big hug and said, "Good luck and take care of YOU, too." I cried.

I tried to log on several times, but was blocked over for some reason.

Had the hula pie three times in the ten days! But, we swam every day and did a lot of walking, so I only gained three pounds...not too bad for a total of two weeks...so, back to Weight Watchers...it was fun eating bread, desserts, and having drinks...lolol...

More later..hugs, Jane

By parkinit On 2013.10.29 20:32
Glad you had a good time and a memorable trip.


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