swalker
Very helpful member
- Joined
- Dec 11, 2014
- Messages
- 1,588
- Reason
- DX MND
- Diagnosis
- 07/2014
- Country
- US
- State
- CO
- City
- Vail
In this thread, I will hope to convey some of the adventures we had in preparing for and taking our spring trip to Yellowstone. I cannot begin to convey just how difficult this trip was. In a post on the PALS rollcall thread I posted a bit about our trip. In this thread, I hope to flesh out some of the challenges we faced and overcame.
The title of this thread is misleading! The adventure started well before our departure. I cannot believe that with all the challenges we faced that we actually embarked on the trip. In fact, several days into the trip my wife and I discussed what we would have done if we knew about the challenges a week earlier. We both emphatically agreed that we would NOT have embarked upon the trip. I am so glad that we did not know of the challenges, as the trip was magnificent! And, of course, the ensuing weeks presented even more challenges!
So, in this thread I plan to place a series of posts discussing the challenges that were presented and what we did to overcome them (or to simply endure them). I will undoubtedly omit many details! But, I hope to convey that with perseverance, amazing things are possible.
For me, the chief takeaway is that progression is real. For me, progression has been slow. In another month, I will celebrate 7 years since diagnosis. Yet slow progression does not equal no progression. On this trip, I was slapped in the face by the reality that progression has occurred. Of note, my ability to type has degraded. I will attempt to fix the many typos that I make, but please have patience for the inevitable mistakes I will make. I use a keyboard that has very light touch keys, but even with that, many key presses do not result in characters being generated!
Key factors are that I now MUST use NIV when sleeping. It is not an option. We prepared for this and had numerous backup strategies in place to ensure that the NIV would be available, even if power failed. Also, for the last 20 months I have slept in a hospital bed. This would be the first time that I would be sleeping in a regular bed. That was quite the challenge!
For the 3 weeks we spent in Yellowstone, we had no outside source of power. We relied on generators to provide the power to recharge my medical equipment batteries.
Despite the significant challenges that we faced, the trip was awesome. My personality has always been to embrace challenges and find ways to overcome them. That attribute was key to enjoying this trip! While I like challenges, I sure would have enjoyed having fewer of them on this trip!
A brief summary is:
1. Just under 2 years ago we bought a 38 foot diesel pusher motorhome to make such trips possible. We had migrated from a tent to a trailer. When it was no longer was practical to use the trailer we bought the motorhome. I can still make it up the 6 steps into the motorhome, but it is certainly a challenge!
2. We spent 3 weeks in Yellowstone National Park, a park we know well. We stayed at the Madison campground in an ADA campsite we have used for the last 5 years. We know many of the campground staff personally and have become good friend with quite a few. They were incredibly helpful! I really can't emphasize that enough.
3. After our stint in Yellowstone, we spent a week in the Grand Teton National Park.
4. We then returned home to Vail, Colorado and sorted out the carnage from the trip. We have not yet completed that task, but ,more on that later!
We saw amazing sights and encountered amazing people (as always).
Stay tuned for further posts about this trip!
Steve
The title of this thread is misleading! The adventure started well before our departure. I cannot believe that with all the challenges we faced that we actually embarked on the trip. In fact, several days into the trip my wife and I discussed what we would have done if we knew about the challenges a week earlier. We both emphatically agreed that we would NOT have embarked upon the trip. I am so glad that we did not know of the challenges, as the trip was magnificent! And, of course, the ensuing weeks presented even more challenges!
So, in this thread I plan to place a series of posts discussing the challenges that were presented and what we did to overcome them (or to simply endure them). I will undoubtedly omit many details! But, I hope to convey that with perseverance, amazing things are possible.
For me, the chief takeaway is that progression is real. For me, progression has been slow. In another month, I will celebrate 7 years since diagnosis. Yet slow progression does not equal no progression. On this trip, I was slapped in the face by the reality that progression has occurred. Of note, my ability to type has degraded. I will attempt to fix the many typos that I make, but please have patience for the inevitable mistakes I will make. I use a keyboard that has very light touch keys, but even with that, many key presses do not result in characters being generated!
Key factors are that I now MUST use NIV when sleeping. It is not an option. We prepared for this and had numerous backup strategies in place to ensure that the NIV would be available, even if power failed. Also, for the last 20 months I have slept in a hospital bed. This would be the first time that I would be sleeping in a regular bed. That was quite the challenge!
For the 3 weeks we spent in Yellowstone, we had no outside source of power. We relied on generators to provide the power to recharge my medical equipment batteries.
Despite the significant challenges that we faced, the trip was awesome. My personality has always been to embrace challenges and find ways to overcome them. That attribute was key to enjoying this trip! While I like challenges, I sure would have enjoyed having fewer of them on this trip!
A brief summary is:
1. Just under 2 years ago we bought a 38 foot diesel pusher motorhome to make such trips possible. We had migrated from a tent to a trailer. When it was no longer was practical to use the trailer we bought the motorhome. I can still make it up the 6 steps into the motorhome, but it is certainly a challenge!
2. We spent 3 weeks in Yellowstone National Park, a park we know well. We stayed at the Madison campground in an ADA campsite we have used for the last 5 years. We know many of the campground staff personally and have become good friend with quite a few. They were incredibly helpful! I really can't emphasize that enough.
3. After our stint in Yellowstone, we spent a week in the Grand Teton National Park.
4. We then returned home to Vail, Colorado and sorted out the carnage from the trip. We have not yet completed that task, but ,more on that later!
We saw amazing sights and encountered amazing people (as always).
Stay tuned for further posts about this trip!
Steve