Anyone backpack with disability

A young man who came on a off trail trip who wore his climbing helmet all the time. He had epilepsy and the helmet gave him protection from falls.

Hmmm.  The helmet was something I hadn’t considered were I to go with the DBS procedure.  I was so focused on the leads and stimulator in the chest possibly getting damaged or the irritation and discomfort resulting from a pack strap riding over it that hitting my head and breaking the leads was something that never occurred to me.  When I was mulling over whether or not to proceed with DBS, I stumbled on this for protecting the stimulator…

Might be a challenge fitting a pack strap over/around but something worth considering.  Its definitely a hurdle accepting the invasive nature and life-long follow-on maintenance related to DBS.  Clinical trials are under way for bi-lateral treatment using Focused Ultrasound and were that to be approved, it would be huge for me.  That would potentially mean effective treatment for both hands, something currently only approved for DBS (and possibly Gamma Knife).  Likely several years or more away though.

Unfortunately her knees (and my knees as well) do not tolerate biking.

Can you tell what is precisely the issue ?

Unfortunately her knees (and my knees as well) do not tolerate biking.
Can you tell what is precisely the issue ?

I apologize if this is way more information than you wanted. I tried to shrink it down.

It is a genetic disorder affecting connective tissues which in turn affects joints. The affected joints are unstable and go beyond the normal range of motion because the tendons, ligaments, etc are too stretchy. This extra stretch causes not only instability, but joint wear.

In my daughters case for example, her back is very hypermobile. Extending or folding her back didn’t hurt, but it eventually caused damage. At 21 she has arthritis in her lower back, and never had an “injury.”

Her ankles roll completely sideways without causing any pain. She can touch her thumb to her forearm with no pain. That is just two examples.

In order to compensate and provide stability the muscles work extra hard. The more joint damage and stretching from overextension of the joints the more the muscles must work. This leads to fatigue.

She started falling a couple of years ago for no apparent reason. After years of doctors, tests, and specialists we finally got a diagnosis. Although it would take a geneticist to absolutely confirm the doctors at UAMS said it was Ehlers Danlos. Among other things he said no stairs and no squats. He didn’t say no bicycles, but the knee pain is too great. I could not tolerate riding bicycles after about 12/14 years old. My family has always had knee issues, so we didn’t think much of it.

Now she has customized ankle foot orthotics (AFO) that will not let her ankles roll. In addition knee braces provide extra stability to the knees.

Ehlers Danlos does affect others systems beyond joints, but that isn’t as relevant to this forum. I did want to mention it as it is relevant to the condition.

So using a smaller gear or so wouldn’t help ? Because of the overextension.

So it is the making of the circular movement in itself, not the force needed to make that circular movement.

I took up cycling years ago due specifically to knee issues which is why I thought it might be worth considering.  I couldn’t handle the constant impact associated with running.  But I can see how the rotational motion might present other issues.  I found that once I had my saddle height/position dialed in and consigned myself to the fact that I wasn’t going to be doing any gear mashing, any discomfort I experienced associated to rotational motion went away as well.  It sounds like even these things may not be sufficient to make cycling a viable option for either of you.  Floating/rafting could be the ticket!

It sounds like even these things may not be sufficient to make cycling a viable option for either of you.

It is possible, I  suppose, that there is a way to make it viable.  I can ride without much discomfort on level ground, but once it starts up even a small incline I can’t. It has been many years, so I don’t remember all the details. But I did have a decent 10 speed, and I could never get it dialed in to make it comfortable. When riding with friends they would ride up the hills, and I had to get off and push. My knees just couldn’t handle it.  I tried again when my daughter was young, but it wasn’t very successful.

Stairs are not as bad for me. They are uncomfortable, but only a problem if there are a lot of them. I remember thinking it is strange that I can hike a very steep mountain all day without discomfort, but as soon as I tried to pedal my knees were having none of it.

My knees occasionally “lock” up. I can’t straighten it completely. I have to slowly move it back and forth until it “unlocks.”  It has been that way since I was a kid. It doesn’t do it often, but now I realize even occasionally is not normal.

And with electrical support ? If needed even in combination with a recumbent trike, I know, expensive but maybe a way to keep enjoying an active life.

I am constantly amazed by the ability of people to persist, and find solutions to seemingly overwhelming obstacles. I lost hearing by over 50% in my left ear in 2017, and then I lost nearly all the rest of it in the same ear in 2019, with an unyielding case of tinnitus in both. Not nearly the disability as compared with others, but it was a significant source of stress for me as I lost my ability to detect where sounds are actually coming from, and it did a number to my balance. The tinnitus keeps me from sleeping nearly as well as I used to. I loaded a white noise generator onto my iPhone, and have gotten into the habit of walking with my good ear  toward my buddies so I can hear them better. I often ask which is worse, losing a limb or losing an eye/ear/nose. I am still not sure, but I am always encouraged to see others overcoming their body’s disabilities, so thanks for creating the thread. I hope the OPs daughter is able to find a good way to enjoy backpacking again soon enough. Regarding hyper mobile joints, several of the PTs I’ve seen for several joint issues I’ve had (shoulders and lower back primarily) have told me that the hyper mobility can be somewhat mitigated by strengthening of the muscles holding those joints. I imagine it would not quite apply to your daughter’s situation with it more or less being systemic, but maybe stengthening the muscle groups associated with the backpacking activity  would help in minimizing the instability in addition to the orthotic help. I am unsure of how pain might be managed; I’m sure you’ve looked into it already.

Another thought worth considering is carrying a satcom device like an in-reach. Sometimes having that with you can mitigate anxiety which might otherwise cause you to consider abandoning your goals altogether before you’ve started.

Everything’s relative.

I was doing a short evening walk a couple of days ago to a viewpoint above Patterdale here in the English Lake District.

Not a high top, but pretty hard winter conditions, and dusk coming on.

Didn’t pass a soul till I came across the most inspiring thing I’ve seen for many a year.

This was the most profoundly disabled person I have ever seen out on the hills. He had matchstick legs with very little functionality, and some kind of extreme distortion of his spine. But he was hammering along on his crutches and gave me a cheery hello as we passed. He was well equipped and looked like he knew what he was doing.

OK, he was day-walking rather than backpacking and his able-bodied mate was carrying his stuff…

But whenever I’m feeling sorry for myself in the future I’m going to remember that guy and his indomitable spirit.

Indeed, there is more possible then you think. Just dare to think out-of-the-box.

A long shot, but perhaps a recumbent bicycle might work out.  Stresses and body geometry while pedaling are different, but only a little different for the knees.  I’ve seen places that rent them, might be worth a try.