Hello

thumper

New member
I have been on exportal for a while mainly lurking, and posting but a few times. My family recently had one of those hiccups in life, that kind of change your prospective on things. My son was recently diagnosed with a brain stem tumor. We found out in April, and he has just finished up his treatment. Before we found out he was an avid hiker with me, completing some short but difficult trails in Alaska. He had some bad reactions to the drugs in the chemo that left him with a trach to breath through, and a feeding tube (he can no longer swallow). The tumor is dead but it reeked havoc on his body before it went. He spent four months in a bed, and has serious balance issues that probably will not go away, so he uses a wheelchair when walking further than 10 yards. I am giving all of these details, not for the sob story aspect, but to get some serious advice. Please forgive me if I am asking dumb questions, but I really want to get my boy out there to see our wonderful world again. So here are my questions.

1. Is there a particular wheelchair that is better than others for off paved trail use? or are we better off sticking to paved trails when hiking.
2. Is there any mods that can be made to a used wheelchair that keeps it foldable but makes things easier for him to enjoy the trails?
3. Is there some type of battery pack that someone on here might use that can recharge on vehicle power, but is light enough to carry around for use to power a very small feeding machine (just to keep water in him), or a suction machine to clear his treach.
4. Am I over thinking his abilities, in other words and I expecting to much, he is just like he was before he went into the hospital with exception to the feeding, walking issues.

I have already converted my swing out tire carrier on the Jeep to a swing out wheelchair carrier, with plans to carry the spare tire on the roof rack. Any advice or ideas are appreciated, and thanks ahead of time.
 

adrenaline503

Explorer
Hello,

The only aspect that I might be able to help with is number 3. I am sure that there is some battery system that can be charged with 12V DC. What voltage does the feeding machine and suction pump run on? Do you know how many amps they use per hour? Its possible to build pretty much anything when it comes to power systems, you just figure out exactly what you need.
 

thumper

New member
The suction machine is 12v, and it says 33watts max, not sure if that helps on that.

The feeding machine is a Kangaroo Joey looks to be a 12v also but it does not say what the wattage is. Though the google results says it runs on as little as 5 watts.

They both have there own battery pack, but I want a main one that can recharge them both.
 

DjDrewDigital

Observer
I have been on exportal for a while mainly lurking, and posting but a few times. My family recently had one of those hiccups in life, that kind of change your prospective on things. My son was recently diagnosed with a brain stem tumor. We found out in April, and he has just finished up his treatment. Before we found out he was an avid hiker with me, completing some short but difficult trails in Alaska. He had some bad reactions to the drugs in the chemo that left him with a trach to breath through, and a feeding tube (he can no longer swallow). The tumor is dead but it reeked havoc on his body before it went. He spent four months in a bed, and has serious balance issues that probably will not go away, so he uses a wheelchair when walking further than 10 yards. I am giving all of these details, not for the sob story aspect, but to get some serious advice. Please forgive me if I am asking dumb questions, but I really want to get my boy out there to see our wonderful world again. So here are my questions.

1. Is there a particular wheelchair that is better than others for off paved trail use? or are we better off sticking to paved trails when hiking.
2. Is there any mods that can be made to a used wheelchair that keeps it foldable but makes things easier for him to enjoy the trails?
3. Is there some type of battery pack that someone on here might use that can recharge on vehicle power, but is light enough to carry around for use to power a very small feeding machine (just to keep water in him), or a suction machine to clear his treach.
4. Am I over thinking his abilities, in other words and I expecting to much, he is just like he was before he went into the hospital with exception to the feeding, walking issues.

I have already converted my swing out tire carrier on the Jeep to a swing out wheelchair carrier, with plans to carry the spare tire on the roof rack. Any advice or ideas are appreciated, and thanks ahead of time.


Hi,
I have some experiences that I can share with you. I have Muscular Dystrophy but it doesn't slow me down.
1. I use a Frontier X5 power wheelchair that is designed to go off-road. The awesome thing about the X5 is that its mid wheel technology makes it nimble enough to be used everyday indoors and still extremely capable off-road. Here's one of my videos demonstrating the capabilities: [ame="http://www.youtube.com/watch?v=fq6vSvtwfI0"]YouTube- ‪Rock'n the X5‬‎[/ame]
Find out more at http://mobility-usa.com.


2. I made a quick-release for the seat so the chair can be broken down and transported.

3. I installed a dual battery system in my van with a Hellroaring Battery Isolator/Combiner to power my respirator. An inverter can be used to charge the chair while driving. I also have a nifty Li-Ion power pack from Battery Geeks. It has 10 Ah capacity and only weighs 2 lbs: http://www.batterygeek.net/130Wh-Portable-Power-Station-PPS130-3V-28V-p/pps130_batterygeek.htm

4. Take a look at the trailer for the movie I'm making and judge for yourself: http://btcmovie.com

Just a heads up, If the lift you have is anything like mine, it can't be used off-road with a powerchair. Mine has broken 3 times, two of them involved the lift and chair being dragged behind my Jeep on the freeway. It was a good thing that my dad had a welding machine and was able to weld it back together each time. Even mild dirt roads put a lot of stress on the lift and the poor departure angle meant it would drag.

hdr0049.jpg
 
Last edited:

thumper

New member
Sorry I haven't replied yet. My son is back in the ICU again, but doing well. I showed your video to him and he just thought that was the coolest thing ever. Thanks for the advice, and keep doing what you do, cause it is an inspiration to him.:victory:
 

jh504

Explorer
Our portable suction devices we use on the ambulance are charged on AC power. One of them with a power converter would work for the suctioning needs.
 

FlexdXJ

Adventurer
Hi,
I have some experiences that I can share with you. I have Muscular Dystrophy but it doesn't slow me down.
1. I use a Frontier X5 power wheelchair that is designed to go off-road. The awesome thing about the X5 is that its mid wheel technology makes it nimble enough to be used everyday indoors and still extremely capable off-road. Here's one of my videos demonstrating the capabilities: YouTube- ‪Rock'n the X5‬‎
Find out more at http://mobility-usa.com.


2. I made a quick-release for the seat so the chair can be broken down and transported.

3. I installed a dual battery system in my van with a Hellroaring Battery Isolator/Combiner to power my respirator. An inverter can be used to charge the chair while driving. I also have a nifty Li-Ion power pack from Battery Geeks. It has 10 Ah capacity and only weighs 2 lbs: http://www.batterygeek.net/130Wh-Portable-Power-Station-PPS130-3V-28V-p/pps130_batterygeek.htm

4. Take a look at the trailer for the movie I'm making and judge for yourself: http://btcmovie.com

Just a heads up, If the lift you have is anything like mine, it can't be used off-road with a powerchair. Mine has broken 3 times, two of them involved the lift and chair being dragged behind my Jeep on the freeway. It was a good thing that my dad had a welding machine and was able to weld it back together each time. Even mild dirt roads put a lot of stress on the lift and the poor departure angle meant it would drag.

hdr0049.jpg

You sir are a ************ with that thing. Another guy with MD here. I have beckers so I'm not in a chair but I get out and enjoy the outdoors to. This is my Chariot.

DSCF0239.jpg


PM inbound.
 

1leglance

2007 Expedition Trophy Champion, Overland Certifie
He had some bad reactions to the drugs in the chemo that left him with a trach to breath through, and a feeding tube (he can no longer swallow).

, and has serious balance issues that probably will not go away,
so he uses a wheelchair when walking further than 10 yards.

1. Is there a particular wheelchair that is better than others for off paved trail use? or are we better off sticking to paved trails when hiking.
2. Is there any mods that can be made to a used wheelchair that keeps it foldable but makes things easier for him to enjoy the trails?
3. Is there some type of battery pack that someone on here might use that can recharge on vehicle power, but is light enough to carry around for use to power a very small feeding machine (just to keep water in him), or a suction machine to clear his treach.
4. Am I over thinking his abilities, in other words and I expecting to much, he is just like he was before he went into the hospital with exception to the feeding, walking issues.

I have already converted my swing out tire carrier on the Jeep to a swing out wheelchair carrier, with plans to carry the spare tire on the roof rack. Any advice or ideas are appreciated, and thanks ahead of time.

Not sure how I missed this post but glad I just saw it...
Sounds like motivation isn't a problem so maybe we can solve the other issues :)

Just to recap:
How old is your son?
And muscle issues or just balance?
It sounds like he has a peg tube for feeds. Do you bolus feed or does it have to be continuous?
Is he on any kind of ventilation with his trach or do you just need suction for secretions?
What are his thoughts about driving trails vs hiking?

Making some assumptions based on what you wrote (and of course your answers to the above questions will really help)...
I would say you would be fine with taking a 60ml syringe and bolus water to him when outdoors.
I would also say that the trach suction should have some sort of bulb thing also but that would require more investigation. Rutgers has a Spinal Cord Injury forum called Care Cures that would be worth posting to.
For an outdoor manual chair the bigger the tires the better, of course there are also off road handcycles that might be better and more fun.
Lastly if he would enjoy driving trails vs hiking then you are open to a ton of solutions and can make all kinds of cool things happen.
 

Forum statistics

Threads
185,530
Messages
2,875,574
Members
224,922
Latest member
Randy Towles
Top