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Sunvista

Active member
Joined
Sep 28, 2014
Messages
55
Reason
PALS
Diagnosis
09/2014
Country
US
State
Virginia
City
Virginia Beach
I am recently diagnosed with bulbar onset ALS. Right now my main symptom is slurred speech. This is a scary time for me. My wife wants to take a vacation to the Carribean. Should I be worried about being out of the country with ALS? I'd hate to find myself on a third world island and suddenly not be able to breathe or swallow (or worse). What is considered fast progression? Days...weeks....months?
 
I will let someone with bulbar onset discuss progression with you... but I would think that a week or two in the islands would not be a problem (unless you're scheduling it far, far in advance). Our first year was inadvertently taken from us. Being misdiagnosed with CIDP, a recoverable autoimmune disorder, we postponed doing a lot of fun things until she'd be better. Had we known that we were dealing with ALS, we would have squeezed everything would could have from that first year. We now look for things that we can do... even if with difficulty or having to be creative... that we might not be able to do again if we wait. It is our way of coping... of staring into the face of ALS and laughing at it. Unable to get off, we may have to ride this train... but WE still have a whole heck of a lot of control over HOW we ride this train. And so we love, laugh and find ways to appreciate and enjoy every new day...

Jim
 
As Jim said, I'll let someone else address progression...

But as to vacations or travel: do as much as you can while you can.
 
I'm no expert on bulbar, but I know limb-progression fairly well. My wife had a super fast progression from footdrop to death in nine months. The only vacation we could have had was in the first month.

The Caribbean is not so much a Third World country, really. Vacations there tend to be in resorts with an on-call doctor who could stabilize an emergency. Any hospital can also evacuate you if you can't arrange it yourself, although an air ambulance is really expensive.

I'd go on vacation while you can.
 
I agree, go while you can. Our last trip was to Lanai for a week. Despite the sadness of diagnosis we had a pretty good time. I bemoaned not being able to hike the island. I tried a swan song scuba dive to discover that my inhalation wasn't strong enough to bring air from the tank. That was sad. We even scheduled another trip to the Florida Keys but canceled it to stay home close to services. Now I just do short afternoon trips to parks in the area. Go now if the Carribean appeals to you. Alex
 
I am recently diagnosed with bulbar onset ALS. Right now my main symptom is slurred speech. This is a scary time for me. My wife wants to take a vacation to the Carribean. Should I be worried about being out of the country with ALS? I'd hate to find myself on a third world island and suddenly not be able to breathe or swallow (or worse). What is considered fast progression? Days...weeks....months?
As someone with bulbar onset ALS. Take the vacation, I was diagnosed August 2013 my symptoms started December 2012 which started with the slurred speech, my symptoms have progressed from the neck up and some weakness in hands but I try to not let it stand in my way of having fun with my family and friends. I have completely lost my ability to communicate through speech which is difficult at times.
So go have fun with your wife! Do all you can do!
 
Absolutely! Go now before it progresses somewhere else. My hubby also has bulbar and we spent the last two winters in sunny Florida. Now, after 2 years, it is iffy. Live every day to the max, and let tomorrow's worries happen tomorrow ! (Except for important planning ahead things like legal documents! See anticipatory planning sticky for those items!)
 
Thanks, I guess I'll just go for it. And buy the trip insurance too including med-evac. Might be my last vacation.
 
HELL YES.... go on vacation! Many of us PALS see very little change in 3 month clinic increments. It sounds like you are in the very beginnings of your symptoms......so go live a little, it could be a great diversion of reality for your wife as well.:)
 
All trip insurance I've seen has exclusions for per existing conditions.
 
All trip insurance I've seen has exclusions for per existing conditions.

I recommend the insurance anyway. Although the ALS is pre-existing, there might be other medical complications that you'll want to be insured against. Talk to your travel agent.
 
Definitely go! I've been to Hawaii twice since Dx and able to snorkel both times. The warm salt water of the ocean feels fantastic, soothing and calming. Go for it, the sooner the better!
 
My husband has bulbar onset as well. I think it depends where you are at in the disease. How is your breathing? My husband presented with breathing issues and has started to progress again rather quickly after a stable period of 3-4 months. It probably depends on your comfort level on handling problems and planning the most. His fvc is below 20%. We will not be leaving the country but we are traveling with in the USA
 
My vote is to take a vacation. My mom has cancer and her favorite place in the world was Las Vegas. She always hoped she would get through chemo and be strong enough for just one more trip there. She ended up making it there three more times before her passing. I know where I live you can get helicopter insurance rather you have any health issues or not. But, I don't know what is out there for that far way.
 
If you fly, opt for the Preauthoriized TSA certification. It costs $40 for 3 years, and saves hours of time standing in lines. The other option is a wheelchair.

GB
 
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