The Time has Come, No Traveling

[NeuroNixed Craig]

Warning! This post might be a bummer for some, and then some may be glad to hear it.

Three years my immediate family has been planning a family reunion for this month with 7 days at Disney World and Universal Studios. We are booked at the Disney Polynesian Resort. My two grandsons are 6 and 8 years old and are both tall enough to go on every ride with the exception of the youngest, too short for two rides.

Due to progressive health circumstances and discussing this trip with my doctor, the final determination for me to go was, "Definitely NOT!" Everyone else is still going including my wife, which I was emphatic she have this first time everything experience with our grandsons. I will stay home.

I don't mind sharing with you this has been a very tough week. The sudden loss of Steve Jobs of Apple, who is my age and then realizing and still not being able to verbalize the fact I will never visit Disney World alive again, without choking up.

I do have some good news though. For those of you who have read my recent book, especially the section on my last wishes, success. After a long search I located and purchased the perfect Mickey Mouse Cookie Jar from a collector. Brand new and taken out of the box only for the photo. They stopped making this particular item in 1980. We are thrilled with finding it.

Should you be interested you can see photos of it on my personal blog in the most recent post. I think the link is in my profile.

I hope to be able to spend more time visiting here but there seems to be too much going on and I no longer have the endurance. I see people here are going in all kinds of directions with their own challenges and this board moves FAST.

Wishing you all hope and well being, may Peace be with you.

[M.A.F]

Hello Craig, i hear you, my days of BIG trips are about over, i love the race track-poker room & casino but its hard to get around them with a 4 wheel walker. i hope some day you can do somthing smaller with your family.mark

[kellygrn]

Been there for 8 years now

I keep on-line updates with friends & family. Since I can't speak, phone calls are out for now. Getting a DynaVox speech machine soon & can talk on phone with that. YEAH!!!

My PCP doc is 2 blocks away located in the same center with the grocery & drug store. There are accessible trails so I feel safe going that far by my self.

Life still goes on. You have to change the way you do things.

Keep smiling.

KK

[Sequoia]

I'm sorry to hear you can't make the family trip to Disney World, Craig. It's hard to recover from the blow of realizing we've reached the point where we can no longer do something we once loved. If I were standing in the room next to you, I'd give you a big hug.

Finding the Mickey Mouse jar at this time was a wonderful piece of serendipity, though.

Peace--and love--to you too, my MS brother.

[CasinoKathy]

Craig, congrats on finding the Mickey Mouse jar you wanted, but sorry you can't travel! I know how much you wanted to go.

FYI- this board may move fast-- but I don't think there is anything I do fast anymore!! I limp along and hope things get better.

Here's to better days (or hours, as with ms you never know) coming for you! Take care, Casino

[sunshine008]

I'm so sorry to hear that, sounds like you love that place.....

i'm curious also what about the trip did the dr. advise not to go? was it the flying?

i'm happy that you were able to locate the piece that you wanted though that's cool.

sending you positive thoughts......

[Shashi]

Craig, I'm so sorry about the trip! I know how disappointing that must be.

Glad you found your cookie jar though. The sun always shines, even on a cloudy day.

Big hugs,

Lisa

[hope32]

I'm also curious what it was about the trip that your dr said no to. My husband and I went when I was 23w pregnant with twins. There was no way I could walk or stand in line for more than a few minutes at a time so we just rented a wheelchair for me. It worked out well and my nephew and nieces would bug for turns to sit on my lap. Also got us to the head of the line at times!

[owlnona]

I'm so sorry Craig. I'm wondering too what your Dr. didn't want you doing?
I know my neuro now forbids me to fly,such a "bummer" so now I have to be driven everywhere I want to go.
My son drove me from Pa. To Disney & back,not a bad trip,we did spend the nite at the home of a friend of his,( he made the BEST grits I have ever tasted) sorry, good memories!
Now 2yrs ago I did fly ( nobody read this LOL) to my son's wedding in Las Vagas,but I SWEAR I'll never do it again.I'm in a wheelchair & to have to change planes & wait in airports & just the pressure in the cabin got to me.I wasn't alone there were 6 of us that flew,but if it wasn't my favorite son's wedding( nobody read that) & we didn't stay at the Mandolay Bay Hotel, I would have never risked it.
Have you thought of the train? I've done that,not to disney,but I taken Amtrack 2x's to Chicago.I pray you can get to go,keep us posted.
God Bless Nona Judy

[mjan]

LIFE=life learned lessons.. oops..first typed LESIONS LOL

Yes its disappointing but I wonder what you are supposed to do/learn in place of Disney? Hmm..and family need not be around while you learn it.

Sounds like a shift in priorities..again for you. Right?

What is it that your doc objected to? Flying? Exhaustion?
If you don't mind our asking.

You know you are loved here, No MS and all, because YOU are OUR gift!! You do know that ok?

Hugs and lotsa love~ Jan

[NeuroNixed Craig]

My Doctor's Reasoning for NO Traveling

You guys are so great with your warm supportive comments, I am so grateful and appreciative of you all.

Many of my symptoms are very similar to a severe advanced case of PPMS, yet my diagnosis is no longer MS. I have a brain and neurological degenerative disease with many more complicated and compounded symptoms.

My doctor is excellent and has seen the devastation to my body after the 16 day Hawaiian cruise. (Yes, I pushed it to the limit.) In addition to what a simple case of an upper respiratory infection has on me. I just returned on September 23rd from our yearly week at the beach and had to stay in bed and sleep most of the time while there. This is becoming more frequent.

I've been to Disney World 15 previous times and know fully the toll it can take on a healthy person. Leaving the house, my routine of no routine, daily living activities, schedules of eating and taking meds all create serious backlash. The physical aspects, information overload at such a high level, heat, early morning and late night hours during the trip, all cause him to feel - and believe - I may progress even more rapidly from this one trip and not recover. Thus, actually creating a new "set-point" of degeneration and progression of the disease. In addition to some other just discovered serious non-neurological problems, should an acute situation happen while down there the results may be devastating.

When you look at what it takes for me to simply go out for an appointment or dinner, I've reached a point with this disease traveling may push my body over the edge. I don't know how better to explain the seriousness and concern of my doctors, wife and other family members. (It's like you want light so you simply turn on the wall switch. I want light, I have to design and build the plant, lay out the grid, run the lines and wires all the way into the house, just to accomplish the same result.)

The bottom line when looking at the big picture, if I make the Disney trip I will definitely shorten my life expectancy irreparably. I'm sorry this is the best I can try to explain and answer your question and I hope you have a better understanding now.

[hope32]

I'm sorry to hear that. That has to be a tough adjustment to make. I hope you have peace with it.

[NeuroNixed Craig]

I'm sorry to hear that. That has to be a tough adjustment to make. I hope you have peace with it.

Thank you for your response. I have nothing to make peace with as I am not in conflict with my situation. I do the best I can to evaluate the overall situation, adapt the best I can from a positive perspective and overcome to move on with my life making the best of the blessings I do have remaining.

Interesting! I guess I just answered your question with a, "Yes, I am at peace with this." I appreciate you pointing this out.

[DianeD]

Similar situation

I think twice and then again about trips. It's mostly, for me, about what the trip entails.

While you are still alive and aware, you might rethink this because it is so obvious you want to be part of the trip to Disney.

Is your family willing to help you ?

Naturally you don't want to plan a trip where you won't receive support, but Disney is very friendly to the disabled.

Several years ago my hubby and I took my mom and dad to Disney World. I planned ahead. My Dad had three open heart surgerys. My mom had many ailments, so I planned accordingly and made sure to reserve wheelchairs.

We had a great trip. My dh and I each pushed a chair and we tried to go early or late day so we avoided the heat. We made reservations at nice restaurants, with AC and that was a nice respite.

We have stayed at about three of the hotels at the World. All have parking lots and you can go back and forth from the hotel to the entrance of Disney. We let mom and dad off with one of us and the other parked the car. If you have a handicapped sticker there is special parking. It's so much easier than the Disney 'bus' which is hot and has long waits.

Would you be able to modify your expectations to just enjoy some moments with the Grandkids? Would you enjoy seeing them do some of the rides or other exhibits and be able to spend other time in the room with some distractions like t.v, computer, videos, reading to pass the time?

I am going on a trip to Lk. Tahoe at Christmas. We rent a house there and there will be 10 of us. This is my only opportunity to see my g'kids at Christmas as my son and family live out of the country and only get home once a year.

I know I won't be skiing or skating, but there are things I enjoy doing and that's what I do. I can see the others doing their various things and I get a lot of happiness just being there.

Personally I lived in Florida and got to Disney many times, so I did do the rides, but I'm so 'over' that; it's okay to just watch the others. Most of the less adventurous rides have special waiting areas for those in wheel chairs and even areas the wheelchair can be put on the ride.

It's great since you don't have to wait in a long line; you are like a VIP! Wow, fun. Even the parades have special areas that you can watch from.

Good Luck on whatever you decide. Diane

[LAlkana]

I'm so sorry you will miss the trip to WDW. I know how hard it can be to get around there.

I use to work for Imagineering in Glendale. Hot as it could get in Anaheim, I just couldn't take the heat and humidity in Orlando. It could be brutal before breakfast.

Make sure your family takes lots of video and photos. Then you can sit down and relive the trip with them in the comfort of your living room.