On vacation in beautiful Maui, Hawaii

[Lavender Lady]

We are in beautiful Maui, 83+ degrees on the ocean watching whales breech and comming straight out of the water. Picturesque sunsets with the waves slapping the beach and surfers trying to ride the waves. Giant sea turtles out with the snorklers. Sounds like paradise!

I have hardly slept for three nights and my emotinal labilty is off the charts. I can hardly stand to get a shower with my husband having to help me. I feel like I am plumiting in my progression and it is very scary.

The condo is up stairs and I can barely make it to the top and then I start laughing which makes it worse. My speech is getting so slow I sound terrible. I feel like I am someone else living in my body. I am scared that this disease is going to take my life sooner then later. It is a nightmare I want to wake from.

 

[joni51]

Rox, The surroundings sound beautiful! Rnjoy this trip with you wondeful family. Know I am hoping you have a great time!

 

[laurel]

HI Rox. Do you have any sleeping pills with you? Hope so as I'm sure the declines you are feeling are due to fatigue. Lots of rest on the beach in the shade of a big umbrella sounds like what you need lots of. I'm sorry you are facing those stairs.
Laurel

 

[BarryG]

Maui in January sounds fantastic but like everything else with us PALS the effort of new things and change from routine is stressful and stress causes fatigue.
I hope that you can get some rest and I agree, a rest on the beach under and umbrella sounds like a good prescription.

 

[arobertson]

Hi Rox,

I want you to know that my dad was diagnosed in late July with ALS! So, he was barely diagnosed before you were. I say all this because my twin sister got married in Hawaii this November and dad made the trip! Yes, it was beautiful and a memory we will all cherish. On the trip, dad seemed to be doing MUCH worse and it really scared me! He too at the current time was having difficulty walking, talking, and everything else you mentioned! But, in Hawaii, it all seemed WAY worse to me. I want you to be comforted in the fact that once we got back home, he was much better! I think a lot of it just had to do with his comfort zone.....he was out of his comfort zone and all the adjustments we had made at home just weren't with us in Hawaii. So, try to enjoy it as much as possible....I know it must be easier said than done. But, I will pray that you are like my dad and just need to be in the comfort of your home! Praying ALWAYS!

 

[Al]

I agree with Barry and arobertson. When I'm out of my element I'm definately more tired and agitated. That's why we do 90% of our socializing at our house. Try to relax and have a good time. Save your energy for the things that you really want to do. Pass on the other stuff.

AL.

 

[Lavender Lady]

Aloha, Thank you everyone for your helpful hints and arobertson I think you are absolutely right. It stressful outside of our comfort zone and I feel comforted that I may be like your dad and be better when we are home. I actually got 8 hrs. of sleep last night felt good. Mahalo

 

[KC2U2]

Glad you got some rest! Enjoy your time there, sounds like a great time to make a deposit in the memory bank.

 

[abbas child]

Dear Rox, I hope you've had another good night's sleep and you're enjoying every moment of this fabulous trip.
Hugs and prayers,
Ann

 

[KC2U2]

Hi Rox!
Surf's up! Ride one in for me! :lol: Really, have a great day!

 

[tmasters]

My favorite spot on the planet. I especially love Kaanapali and the Barefoot Bar. Have one for me!

-Tom

 

[rcharlton]

Hi Rox

Sorry you weren't able to enjoy every second of your trip - hope the rest of your vacation was less stressful - sounds like there was a lot of natural eye candy.

As a PALS, it is a real struggle deciding whether or not to travel these days. On the one hand you are afraid to leave the comfort and safety of home - on the other hand you want to squeeze in as much travelling while you still can.

The thing I miss the most on the road is my bidet - I've bought about 6 travel bidets all of which were useless

I've racked up a ton of debt travelling to all my remaining dream destinations- but I think someone is trying to tell me my travelling days are over

Last year my bipap machine was temporarily lost in transit to the hotel.

and we just had a nightmare trip to disneyworld in early December for my daughter's 3rd birthday. It was cold. My wife, daughter and caregiver suffered through 3 successive episodes of stomach flu - vomiting every 30 minutes for 12 hours- my daughter barfed in the country bear jamboree. We were thinking that we would have to take my daughter to the hospital cause she could not hold anything down - at the same time my caregiver and I went out to get some gatorade for my daughter - and I had a trip and fall which resulted in me being knocked unconscious, a concussion, a bloody face, a bruised rib cage and hand - not to mention an ambulance trip, x-rays, catscan and a $7000 hospital bill - but I guess I was lucky not to have broken anything although any kind of movement was excruciatingly painful. The next day my caregiver was hit with the flu. By some miracle I was spared the flu.

What are you going to do?

 

[abbas child]

That is such an extremely bad experience; and you paid good money for all that misery.

Rox, I hope you're still doing better... downright great!

Ann

 

[Alyoop]

Rox, Hawaii sounds lovely, but it's a pity it's been so stressful for you. I am so sorry.

Rcharlton I am very pleased we have a socialized medical system and getting Ill does not break the bank! I just realized you were hurt in USA, did you have insurance? You poor thing what a disaster of a holiday.

Rox my husband just asked me a couple of hours ago, if I will go to Hawaii with him when he attends the American academy of neurology meeting. I would take my 12 year old son. I can decide if I can be bothered. Can you or anybody else tell me if it's worth visiting? I am not one to lie on a beach. We would be going in April?

Aly