Status
Not open for further replies.

AzBabs

Active member
Joined
Aug 30, 2012
Messages
63
Reason
PALS
Diagnosis
08/2012
Country
US
State
AZ
City
Glendale
Hello All,

My heart goes out to all with this devestating disease. I was diagnosed this week with Bulbar onset ALS at Barrow Neurological Institute. So far I have slurred speech with tongue atrophy, weakness, & fasciculations. First noticed mild speech changes last September. In the past month I have started having frequent fasciculations in my arms and legs. I'm still able to eat, drink, and communicate orally. I have very mild weakness in my right arm.

I am trying to organize a family vacation to Disney World for next March. I am hoping I am still able to walk and possibly eat at that time. What do you think my chances are for this to happen? I am an RN (25 yrs experience) and have no problem getting a PEG or Trach.

Can any one help with this? Should just like to plan ahead. BTW I live in Phoenix and would like to drive to Florida with my parents to visit family in Texas and Mississippi. Hubby & kids will fly down to meet up w us. Am I being unrealistic.

Thank you so much for any responses.
 
Hi AzBabs, there's no right answer here, it all depends on your progession... but I'm willing to bet that if you plan for the worst (wheelchair, other aids) and hope for the best, you should probably be fine. Since you started bulbar, you may still be walking perfectly fine, and eating ok with some limitations. Plan for the limitations and LIVE your life,

Welcome to the forum!
 
Welcome and so sorry you have to be here
Unfortunately noone can predict how quickly or slowly this will progress. I pray it is very slow.
My PALS is limb onset so of course our issues are different than yours. We did Disneyworld 3 months after diagnosis and it was wonderful. Although she did not yet use any mobility aids at that time we did rent a scooter and if you are having any limb or fatigue issues when you go I would encourage you to do the same. Disney is very good at managing transport for wheelchairs and scooters.

Wishing you all the best
Nikki
 
so sorry you find yourself here, but welcome aboard.

There's so much variety in the manner in which we progress and also the rate of progression that it would be difficult for any of us to say with certainty that you could or could not do as you wish next year.

By all means travel, but build in some flexibility to your plans in case the disabilities need to be accommodated. Talk with your Doc as well to see what he/she thinks about your rate of progression and what if any accommodations you might need to make for that time frame.

good luck!
 
Hi! Sorry for your diagnosis! My husband is also bulbar onset....we went to Europe this summer, I sent his formula/bags for feeding ahead of us, he used his iPhone to speak and had a cane. Staff on the cruise ship were very accommodating. I would say do as much as you can while you can. We are heading for St Louis and baseball games in a couple of weeks, I've rented a scooter and we are flying business class where there is more room...

Jen
 
Thank you so much for your responses. I am still is the shell shocked stage as I was diagnosed this week. Ironical I am a pediatric RN specializing in home health with medically disabled children. I have taught many families on the use & care of peg tubs, Mickey buttons, trachs, c-pap, vents, and other adaptive devices over the years. I've been to Disneyland with a little girl in a w/c with O2 & feeding pump in tow. It is so daunting when the tables are turned.

I am flying to Oregon this week to visit my daughter at school (7-14) and trying to do all I can. I have clinic Sept 17 and will try to get more answers then.

Thank you all again!
 
Welcome Az. I'm sorry for your DX but glad you're here. Like has been said, keep living your life. It seems like you have a leg up on that. Good for you! :)
 
Welcome Az...sorry you have to be here. If you have any questions, ask away. There are a lot of great people here!
 
Welcome AzBabs, I'm sorry for your diagnosis of ALS. You are already doing things to make your life easier by asking for help. I commend you and wish you to live life to the fullest. Make plans, see people you care about, and do all you can to continue to be you. Please make sure you take the time to rest when you need it so you do not wear yourself out. Ask any questions you think of, we will all to help.
Kris
 
Welcome...sorry you find yourself here but the forum is full of support and knowledge.
 
Welcome AzBabs. So sorry you are here but so many kind folks will reach out to you on this forum. My husband was diagnosed with bulbar onset in February. We planned a trip to Disney World for October. So far so good with only a month to go! We were unsure just as you are. Guess every case is different but hopefully you can take heart to where my husband is in this journey. His symptoms are similar to yours, in the 7 months since diagnosis the only change has been more difficulty talking and eating, but still doing both! He has twitching and charlie horses in his limbs and neck, and fatigue, but all in all I think he is doing pretty well. We are SO looking forward to the trip with our kids and grandkids. We were thinking months ago that he might need a wheelchair by Ocotber but not at all. Still golfing! And no peg tube yet although I see that happening in the not so distant future as he does choke at meals. So I hope your trip in March finds you in the same shape as my husband. Best of luck to you!
 
So sorry Azbabs, I try to not put off till tomorrow what i can do today... and yet soooo much gets put off arggggh EG - i started doing some voice recordings 6 months ago simple 'pre recorded messages' i still dont have it finished ... and thought six months ago i may not have a voice in six months the way im going ... but i do! Not as good, and I now often get asked to repeat myself because of the slurriness..and the longer i talk for the harder it is... but you know, i have surprised myself the way i have taken most things in my stride... with time and adjusting (sometimes adjusting on a daily basis) -i so relate to your post and that panic and needing to know ...when will my voice go? etc etc and especially with you being a nurse - i armed myself with as much knowledge as possible (diet etc) and searched so much into all the latest trial/stem cell therapy etc ..... i do think the greatest 'healer' is love and forgiveness of your own body and what is happeneing - i am still learning daily to forgive my body and love myself unconditionally, ... no matter what!
 
Azbabs -another thought too.. one of things on my tick list last year was going hot air ballooning (along with so many other things) a few weeks after I added it to my too do list their was a terrible accident in NZ where about 8 ppl plummeted to the ground (i think the basket hot some wires and caught on fire.. anyway -they all died instantly - nobody really knows when there time is up or tradgety strikes them blind/paralyzed/cancer etc ... LIVE LOVE LEARN... i havnt gone hot air ballooning lolololololol ...yet ?
 
Thank you so much everyone for your support & suggestion.
MCpara your response really hit home. I'm reserving a room with wheelchair accessibility just in case.
Mostly worried about my 13 yo. We adopted him 6 years ago and he has so much loss already.

My love & prayers to all,

Barbara
 
Barbara,
Your story sounds similar to mine, starting with speech issues.

I told my kids (16 & 9) that ALS may rob me of my physical, but not my mind or feelings.
I told them I'm lucky because I've been given enough time to tell everyone I care about how much I love them.

Enjoy your trip, and enjoy every minute with the ones you love, because memories and feelings will get you through some of the dark times when they come up.

Welcome to the forum. Ask what you need, and share what you can.

Cheers,
Say "hi" to Goofy for me.

Casey
 
Status
Not open for further replies.
Back
Top