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By jcoff012 On 2015.06.28 12:43
We decided last night to schedule another trip back to see his NC week after returning home from Hawaii!

Call us crazy, but he sees his neurologist on July 20, and unless he feels it is unhealthy, we are making plans to fly back today...we spent two hours last night going over all possible scenarios, matched our scheduled appointments, tinkered with various airline possibilities...and this morning will make tentative plans.

He had promised to not overdo with them and to TELL them how he feels...he tries to avoid questions, etc...I think he knows how afraid they are of...After Mom, now you, am *I* next as a PWP? But, I told him it was time for him to say, I can't....and don't...

We will see how this goes...I keep telling him we have planned for the future, have excellent retirement income, and have full medical coverage, so I want to spend any of the money for him to be comfortable...with airfare and car, if it is possible, let's do it while we can...

By mylove On 2015.06.28 19:57
Go, Jane! :)

By jcoff012 On 2015.06.28 20:16
Actually, the trip to Hawaii would have been MORE than enough for me, but this was HIS idea...took a long time this morning, but we finally got short (5) hour flights and first class for $1200 less than the first ones we he is very pleased...have to travel Thursday morning to Thursday morning two weeks later, but that's ok! Being retired is a bonus when making travel arrangements!

By mylove On 2015.06.28 20:24
Very true! I'm looking at the first class upgrade. It's about $200 more. Worth it?

I'm also debating doing as one site advised and asking for the airport wheelchair even if we don't "need-need" it. Others have suggested it puts you on a different priority track and can help. Have you done this?

By lurkingforacure On 2015.06.28 21:41
I don't think you have to have a wheelchair to get some help at the airport. On our last airline trip we walked into the airport to find a mile-long line for husband almost passed out realizing how long he'd have to stand to get through the line, so we went up to an official, told them he had Parkinson's, and they move our entire family (all of us including kids) to a special line where there was no one going through. I think it was for disabled/handicapped people but also employees/flight attendants, etc.?. We did not have a wheelchair and although they asked us if we needed one, my husband declined. Use the chair if you need it, but don't feel that you have to have it to get some help for traveling with Parkinson's.

By jcoff012 On 2015.06.28 23:04
Michelle, the upgrade is WELL worth it...the seats are much larger, there are foot rests...but the main reason I opted to upgrade was for the restroom...a very short walk to the one in first class and VERY few people use it, so access is quick and is usually on the left, so we book on the left side of the plane. Also, the food and drink service is much better...the food is not just candies or pretzels...usually has fruits, etc...depends on the length of the flight. Also, you don't have to wait go through different lines and board early. as for a wheel chair or help...TELL everyone Ben has PD...On our way home from Las Vegas, the woman who was at the check in walked up to us and discretely said, "Would you like to board before anyone else, so that you have extra time?" We boarded before they even called first class! On the trip to Hawaii, one of the first class flight attendants told me her Dad had PD and she would hover around to make sure he experienced NO stress! Lol it was sweet!

I do agree that all you need to do is ask for and accept help...airlines are very accommodating.

That said, I would shop around...don't accept the first price as the best...we spent a LOT of time before we found nonstop, quick flights...and like I said, they were a LOT less remember, that booking four months in advance like we did made the price go down.

As for the price...we could have flown much cheaper by going coach, but you are back to long lines, crowded seats, etc...a BIG problem for Carl is he thinks his tremors bother others if we sit three across...that, and putting luggage in the overhead makes him feel like an old man,,...his words. Here is the way I figure it...we don't travel as much as we planned, so why not spend the money we saved and give him the luxury he deserves...I will be fine financially when we reach the end of this road, so spending the money now to make his life more pleasant seems to be a no-brainier. And, yes, we are lucky, I admit that, but even if we weren't secure, I would work to get the upgrade...all his life he has done things for others, so this is his payback time...Love this man!

By mylove On 2015.06.28 23:34
All great info! Jane, I'm so tickled Carl feels up to trips still. Ben's a trouper for wanting to tag along to Austin in August with me for a business trip. But we are taking an extra day and a half and making it a vacation. I heard Austin is arty.

We had a great experience recently at Safeco Field when we went to a ball game. Ben had his cane, we were standing in a very long admissions line, and a wonderful gate attendant noticed us. She came over and told him he didn't have to wait in that line, but could go right in through another access point. There was another gentleman in a chair that they'd bypassed through the regular line as well. It was a fabulous experience. Ben doesn't play the handicapped card often....I know it's hard for him. But he's realistic enough to know his limitations and that using what's available sometimes means he has enough energy to last through the day.

These are small victories for us, all of us.

By jcoff012 On 2015.07.01 17:49
I have tried three days in a row to post, but get dumped off the site, so I will make this short and sweet...

Michelle, as an artist, you will LOVe the RiverWalk! Shops, galleries, colors! Trendy and FULL of fun!

For Ben, it is a long, windy walk, but flat with lots of benches on which to rest...

More if this posts! Lol

By jcoff012 On 2015.07.12 17:12
Mid-July Update...

I have had two rounds of Avastin treatments, and although my eyes ae far from "better", they have improved! I have my third set of shots on July 24 and Carl has his appointment with his wonderful Dr. Christine. He makes me smile every time I see him treating Carl. ;)

We formalized our plans for Hawaii in mid September..going to both Oahu and Maui...

At the same time, we also planned a two week trip to North Carolina about a week after returning home..I think it is too much, but he is determined to go back to check on his family...His oldest sister is ailing, so that is a great motivator...when I said it was too long a trip, he found a five hour nonstop flight...took awhile to research, and he upgraded again, so what could I say?

I have nowhere else to vent, so forgive me...In order to go on these trips, he has ramped up his exercises and his walking, thus giving him cramps, sore muscles...and irritability BIG time. I realize he is the "big brother" to his family of five siblings, but going to such great lengths to NOT show them he is losing muscle mass, stamina, etc. seems dumb to me. Parkisnon's is what it is, right?

If it were you, would you just stand by and watch him go to these extreme lengths? He cannot recognize that he is overdoing, at least he SAYS he is "fine" and he HAS to "get in better shape". It is like he is trying to convince himself he IS fine...sad to me, because he is generally kind and levelheaded...

By the way, he is not overweight, has great blood pressure, etc., so he isn't doing any of this to lose weight...For the first time since his dx, he seems obcessed with "getting in shape". Go figure.

By LOHENGR1N On 2015.07.12 18:42
Jane, I've been quiet on this because I don't want to be waving a red flag but you're now questioning so. Carl started on an agonist awhile back. These can cause as we know compulsive behaviour, even mania in some. Your bringing up his going to extreme lengths might be cause to pause and revisit the agonist and behaviour. It may be something to consider.

By jcoff012 On 2015.07.13 11:44
Al, I always appreciate your input...we see Dr. Christine next Monday, so I will mention this...he has been on the Requip for a long time, but who knows?

Right now he is out walking...he will walk an hour (in the high heat here), then come home, drink some water, then start in on exercises, exercises with bands, LSVT exercises, etc...about TWO hours of this!

I know others are reading this, saying, 'Lands sake, I WISH my PWP could move like that. You are lucky." But, it doesn't feel feels scary. I cannot help but wonder how devastating it is going to be for him when he CAN'T go to these extremes. Also, I wonder if his not being able to see how overboard this is, is unhealthy?

As always, I am trying to permit him to handle PD in his own way...just hard to watch, thinking he may overdo and regret it soon.

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