Watching the Struggle

[soonerwife]

My PALS and I just returned from a very nice vacation to Nashville Tennessee.

While we had a very nice time, it was so difficult to watch my husband fight for every step. He took his first tumble and tripped at the airport, luckily he was able to catch himself. So scary knowing that any time he could fall and really hurt himself. He is a very proud man's man and I'm sure will have to "learn the hard way" before he gives in to any assistance.

My husband has Bulbar Onset ALS, his speech is increasingly worse all the time. He had to write things down for me alot during this trip.

While I am extremely grateful for the trip we were able to have, it breaks my heart a little more each day watching what ALS is taking from him.

Thanks for letting me share my heartbreaks! I know I am not alone.

 

[JimInVA]

You are not alone. One of the most difficult parts of being a CALS is watching the little pieces and parts being slowly taken away. I've considered it my task to recognize what is being lost and to find new ways to compensate. Keeping quality of life good and manageable is a part of what I contribute to this ride. Right now we're dealing with it getting more and more difficult to move and click the mouse. Fortunately, she uses Dragon Naturally Speaking and can tell it to "click mouse" and get it to click when she can't do it with her finger.

I'm glad you made your trip. You will both look back on this fondly... even with the difficulties... time and time, again. There is a temptation to "stay in" and not go out. I would encourage you, even though it will become challenging, to find reasons to get out and about. Doesn't have to be long trips... short ones... even overnighters... can be a fun time. Once we decided that there was something that we wanted to accomplish, we found the way to make it happen.

Jim

 

[Staying strong]

we are on year 5 of my wife's bulbar and Tennessee ( pigeon forge and Graceland) were our last Real Vacation. It's great you were able to enjoy it together. We are sure to laugh and enjoy at least one part of everyday Together. It's a scary journey. But your not alone when you come here as I have found.

 

[gooseberry]

It was the worst part for me. I could look objectively and plan, as Jim said, but I reached a point where it was very, very difficult to see my husband the way he was.

 

[GregK]

It's interesting that you describe him as "proud".
Have him read this: https://www.alsforums.com/forum/gen...-pride-goeth-before-fall-cautionary-tale.html

 

[KatieNBoyd]

I am glad you took your trip. That is a good thing. It is scary to see our loved ones lose the skill and independence that has made them who they are, and the world continues to go on. These forums have been a place to come and know others truly understand what each of us is going through. Sending Hugs and strength.

 

[soonerwife]

Thanks everyone! Sometimes you just need to talk about what is happening. Here, everyone understands and it means so much. Thanks for listening.

My PALS and I had planned years ago that for our 20th anniversary (July '17) we would go to Hawaii to celebrate. We decided that we should take that trip of a lifetime early. We have booked a trip to go at the end of June '16... One more thing from our bucket list!

 

[gooseberry]

We didnt get to do our 25th anniversary quite how we wanted. We ended ip on a weekend trip to cumberland island national seashore hiking. Steve kept falling behind and I had to circle back or stop and wait. It was the beginning of the obvious signs.

 

[soonerwife]

On our trip to Nashville, I tried to walk very slow, I tend to be a fast walker but still had to stop and wait most of the time. We used Uber's for pretty much everywhere we needed to go. It was definitely a reality check.

 

[gooseberry]

Its funny how the small things make us have the big reality check.I knew something was wrong about a year before diagnosis. I could outbike, hike, etc Steve. In the past we pushed each other and he always won. Winning was very important to him. So for me to get ahead dar enough to wait for him, that was very odd.

 

[tripete]

I think as a PALS that trips/vacations are the most important thing I have done.

Last August my wife and I went on a 14 day transatlantic cruise. I was initially very concerned about the airport to get to London and all the stops, and how I would get around, would it be a waste of money, would I make it miserable for my wife, how would I handle the long flight etc....

I can still walk short distances and could then as well. However I bought a collapsible electric wheelchair off of Craigslist, and with some modifications it was the perfect tool to make the trip very enjoyable. I also took my trilogy to use when I slept. In short get and use the tools that will help.

The trip was one of the few things we both look at and smile about. We leave Thursday for a 8 night Baltic cruise. I know it will be the last, but I look forward to seeing my wife smile at least one more time.

 

[gooseberry]

Pete, Our travelling and planning trips was definitely very good for Stece. He so loved to see and explore new things. I hope your trip is amazing.

 

[tripete]

Steph, I love the exploring too, but it is the smile on my wife's face as she enjoys something like normalcy. I hope they are memories for her that help her to someday be happy again.

 

[konagirl]

I get this. We took the kids on a Disney cruise last month and while great memories were made, it was almost like a slap in my husbands face to remind him of all the things he couldn't do anymore. He has taken all of this with so much grace and dignity and rarely ever complains, it is soooo hard to sit by and watch when I just want to fix this for him. I want to plan something else soon, something for him. The Disney cruise was because he wants to be in the kids (3 and 8 ) memories of their first cruise. He is a big hotrod car guy though and car shows are a big part of our life, something we have always done with his dad and brother. I am thinking about taking him to Hot August nights in AZ (we live in FL). This is something he has always wanted to do, in addition to him getting to go there, the kids would get to take their first airplane ride with us as a family. But.....its AUGUST and who knows what his status will be at that point. Planning ahead is difficult.

 

[soonerwife]

konagirl, I hope you guys get to go. It feels really good to be able to make some of their dreams come true. I know I am a little worried about our Hawaii trip that is only 8 weeks away so I understand that completely.