Anyone backpack with disability

[Sherry Thoeny]

My daughter (21) was recently diagnosed with a genetic disorder that affects her joints. Ehlers Danlos affects connective tissues. Her joints are very unstable, especially her ankles. And she shows signs of arthritis in her back. She now wears AFOs for her ankles. They work very well. She has had symptoms a couple of years that gradually got worse.  Diagnosis took a long time, and she was too unstable to risk backpacking. So we car camped and day hiked.

 

She is currently doing well and is stable with her AFOs. She tires easily because her muscles take on a larger workload to make up for her joint instability. But she no longer has her ankles and knees collapse and fall.

We are both hopeful she can backpack again. We are working on really lightening her load, especially her sleep system.  And we plan to take shorter trips. As well as at least initially have an exit plan if she can’t handle it.

Anyway I was wondering if any of you have health issues you have to deal with, and what adjustments you made to continue.

 

[Bonzo]

Nothing that severe, but yeah: matching back injuries that sidelined us for years.  Solution: lots of physical therapy that led to partial healing and pain relief, lather/rinse/repeat.  Lighter loads definitely help.

[Jason McSpadden]

I’ve had MS for 30 years.  Finding, reading, and implementing Ray Jardine’s Pacific Crest Trail Hiker’s Handbook was and still is a God-send for me.  My base weight is around 7 pounds–although I can get lower if conditions permit.  Hiking poles have also been a God-send.  Recently some focused physical therapy along with some new goals for my backpacking have been given me a real boost in my strength, balance, coordination, etc.  I like Bonzo’s “Lather/rinse/repeat” mantra.  My body and the disease seem to always be changing.

[Eric Blumensaadt]

Sherry, so sorry to hear of your daughter’s illnesses. It’s so tough when that happens at a young age. Car camping is a good way for her to get outdoors and for your to enjoy it with her.

My “underlying condition” is that I’m 77. Can’t go as fast for as long anymore but I can still go fairly well with (luckily) good knees.

The part that’s kinda depressing is that I know I have limited years of backpacking left, as in maybe 5 years. C’est la vie. I’m luckier than most my age. Car camping is in my future too.

Well, yeah, all my toes are numb from nerve damage in my spine, my shoulders need more screws in them and I’m due for cataract surgery soon. “Maintenance…”

“I’d rather wear out than rust out.”

[AK Granola]

I was first drawn to BPL because of my arthritis issues, and no longer being able to comfortably carry a heavy pack. I figured I was done backpacking, until I managed to lose a lot of pack weight. I have nothing as severe as what you are describing though. But lightening the load definitely helps with just about any physical challenge; weight carried in the pack adds to the loads your joints must support. It’s also just much more enjoyable without so much unnecessary stuff.

I also added hiking poles, which helps with the carry weight but also with my increasing clumsiness, also part of my disease. Finding footwear that really fits has helped immensely; that took a long time, and I did a lot of reading and testing. But your feet are the most critical tool, so making them comfortable is critical. Tons of threads on that topic.

I would assume there are groups for people with this disability? Maybe they can help with ideas for hiking, specific to this condition.

[Rex Sanders]

“I was wondering if any of you have health issues you have to deal with, and what adjustments you made to continue.”

Yes, and my list is long and always changing. But over time, I’ve learned to compensate, work around, or accept a certain level of suffering. Now, I don’t even think about it much.

I focus on trips within my abilities, and enjoy those. Sometimes I push the envelope, and must cut a trip short. Still learn something every time, and being outdoors is way better than sitting at home.

I’ll echo what others said: lighter loads make everything easier. And some of the easiest and cheapest weight savings come from leaving stuff behind you don’t really need. Takes practice and experience in lower-risk settings – maybe car camping or backyard outings.

If carrying more than a few pounds won’t work, look into hiking between backcountry huts or staffed camps where you can show up with little more than a change of clothes and a toothbrush. Or even guided trips with pack animals.

If that much walking is out of the question, check out whitewater rafting trips. Still traveling and camping in wild settings, and you don’t have to walk more than a few dozen yards most days.

I hope your daughter can find what works for her, then focus on the joy of doing that.

— Rex

[James Marco]

Yeah, I have back and shoulder problems from some rather extreme construction in my early thirties. Anyway, after back surgery I was told to limit things to 25 pounds. There are several prosthetics and braces out there to help stabilize joints. Ankles. knees and hips take the brunt of any packing. Back and shoulders make up a close second. Anyway, I reduced from typical 50+lb base loads to <10 lbs, or, UL loads. This was the first thing that helped me.

Secondly, in a time of a lot of resistance to hip belts, I use a good hip belt to get the weight off my shoulders and back…even with a UL pack. However, I am not sure this will work as well for your daughter. SUL techniques will certainly help a LOT. Prepare to spend money on the lightest gear possible: Dyneema tents, good quilts, good pads, UL cook kit (UL pot/cup, spoon, windscreen, alky stove and fuel at less than 8oz), packs around 8-10oz, and so on. Pick areas with a fair amount of water to reduce water loads. Less taxing trails, shorter distances per day, Reducing her pack load to less than ten pounds is certainly possible for 9 months per year. In summer, she can hit <5 pounds (SUL.) With help, she should be able to get lower. The wife and I have taken some XSUL loads (<3pounds base load) as a pair.

Iff she still has trouble, well…nothing you can do but car camp. But that is no reason NOT to head out. Good Luck!

[Brett A]

Interesting topic.  My personal challenges are related to Essential Tremor, certainly nothing compared to those your daughter faces but challenging all the same.  It primarily affects my hands and, to a lesser degree, my speech, gait and balance.  With my hands, it’s a rhythmic shaking that occurs when I try to eat (use utensils), lift a glass to my mouth, write, type, use tools, etc.  The shaking intensifies the longer I try to perform such tasks, to the point now where its sometimes difficult to perform them at all.

Backpacking-specific tasks such as using a compass, tying knots, using a stove safely, operating a headlamp, taking a picture or video, etc are becoming very challenging.  I’ve wondered if recruiting my wife to take videos of me trying to do these things might be helpful.  I get stubborn and resistant to taking advice for ideas of different techniques in order to adapt.  That’s not getting me anywhere!

Some things I have done thus far:

• Eliminate having to tie knots whenever possible.  Grosgrain with ladder locs or line loc 3’s and cord with pre-tied loops at either end on all tie-out points on shelters.
• Using a remote canister stove with wide pot supports in order to lower the pot’s center of gravity and provide a more stable base.  This also moves the regulator out from under the burner and away from the stove and pot,
• Using a small kettle rather than a pot.  The wider base and large bail of the kettle makes lifting and pouring much safer.
• Aqua Mira drops are not an option.  I carry Micropur tablets only as a backup because opening the packet and getting the tablet in a bottle are a challenge.  Primary water treatment is either a BeFree or Squeeze.
• Still looking for the perfect headlamp.  I’ve tried a number of brands and models.  BD, Princeton Tec, Petzl, Nitecore.  I love the NU25 but manipulating the buttons is a PITA.  Surprisingly, a cheap model with a large single button that I picked up from Walmart is the easiest to operate.  The tremor intensifies the colder my hands get.  Being able to operate the headlamp one-handed with a glove on is what I’m after.
• No electronics requiring coin-type batteries.  I would like to adapt/change to USB-C on all electronics.  Makes plugging things in easier.
• Large zipper pulls.  And no clothing with buttons.
• Always use trekking poles (gait and balance related)

My wife and I are planning on doing some off-trail day hikes to brush up on our map and compass skills.  We’ll see how that goes.  The Suunto global compass needles are supposed to settle more quickly so I may pick up one of those.  I don’t have much experience in that area.

Wish you both the best of luck on getting back on the trail.

[AK Granola]

One of the difficulties your daughter may encounter, even on trail, is the judgment or even comments by strangers, who don’t understand what she is facing. I have directly encountered this and been criticized to my face, buy someone who didn’t understand that I have a condition affecting use of my hands (I dropped my very friendly dog’s leash because he pulled too hard, and she freaked out). Our disabilities may not be obvious, and therefore people may conclude there is nothing wrong and feel the need to judge or give unasked for advice. I have a number of friends who are active and fit, and yet have conditions that limit them in various ways; you would never guess it by looking at them. It’s frustrating that we no longer have a societal practice of courtesy toward strangers, but that appears to be the case. I try to ignore such comments or stares, but in my less than proud moments have lashed out, as in the case above. I don’t know of a good way to deal with these people – I usually don’t even respond to them or speak to them at all. My issues are none of their business, and they haven’t learned to mind their own. This is an issue that affects many with “hidden” disabilities.

[Brett A]

Good point @granolagirlak. Something I’ve encountered is well-meaning individuals all too quickly stepping in and offering to do things for me. I know they mean well but its generally a matter of me wanting to remain as independent as possible. There are times that I need to set my pride aside and accept the assistance. More often than not my pride gets in the way though. Doesn’t help when I start cursing and throwing stuff. I do know that I’m extremely self-conscious about it…maybe anticipating a reaction like you describe. I suppose it’s hard not to when you look up after spilling your food everywhere and someone’s looking at you like you must be a drug addict!!! Something I need to get over for sure. It shouldn’t matter to me what they might think.

[Brett A]

@thoeny, I’m wondering if bike touring would be another option for you and your daughter to consider?  Sorry for my ignorance but I wasn’t sure if her condition would allow for such.

[Brett A]

This looked like a cool adventure in your neck of the woods!

[Sherry Thoeny]

I appreciate all of your replies. A rafting trip is a great idea. Definitely something we will keep in mind regardless of her success with backpacking again.

Unfortunately her knees (and my knees as well) do not tolerate biking. Biking and stairs are terrible for her knees. Hiking uphill doesn’t seem to impact them in a negative way.

Our last car camping trip she was able to day hike for 7 miles. She used ankle and knee braces, and they helped a tremendous amount. She also used poles for the first time, and as juch as she hated to admit it, she was surprised at how much they helped.

Thanks to gear swap we got a lighter shelter and moved from bags to quilts. So now both our quilts and shelter weigh less than just our previous shelter. In the past we new we carried more than was necessary. We know we will have to pare that down a lot. Food is going to be the most difficult to get right. Previously our packs with food was around 25 pounds or so, depending on the trip. I know we can drop that significantly. We tend to pack things we don’t need and redundant items. We will have to stop that habit. In the past we thought it was no problem we can do it. If she wanted to carry sketchbooks and two novels on a two night trip, I wasn’t going to argue about it. Now I will, if needed.

Trip planning is going to be critical. We have discussed some things. We will have short trips with just a couple nights. And the daily mileage will be low. We normally hike with my mom, her dog, andour dog.  We will plan hikes with the ability to cut it short if needed.

 

I wanted to say she does have issues she is dealing with. However, it is something she can deal with. She recently got custom made ankle foot orthotics. They give her ankle support. With them her ankles cannot roll and collapse. Those with soft knee braces make walking and hiking so much easier than it has been for the last couple of years. So although the disorder causes mobility issues, knowing the cause allows her to address them and greatly improve her mobility and pain levels. Prior to the proper diagnosis the instructions from doctors was actually detrimental.

 

Than you again for your replies. As we digested this reality, I started thinking about how many people deal with problems we are not aware of. I realized odds are there are people here that have health issues that make backpacking challenging. Thank you for sharing.

[Geoff Caplan]

Hi Sherry

I suffer from the fatigue disease M.E. which involves chronic pain and long periods of relapse when I can’t do much. Plus it’s difficult to predict my capacity from day-to-day so I’m always setting off into the unknown…

Of all the things I’ve learned, perhaps the most important is to be flexible and to enjoy what I can do, however little.

I discovered an innovative treatment that enabled me to return to serious projects in the mountains after decades after of relative disability. It’s hard to express the joy that has given me.

But at bad times I can still go for a gentle wander in the lovely parks on my doorstep and enjoy the flora and the fauna and the views. You simply learn to appreciate things on a smaller scale.

And if I’m in the hills and run out of steam, I simply adapt my plans. I may just sit down and enjoy being in a wild place. Or figure out a shorter route. At times when I’m a bit wobbly, I go for routes where I can bail out relatively easily if things aren’t going well.

And as I’ve moved to a place beside a famously beautiful lake, I’m taking up canoeing and dinghy sailing as something I can do in the outdoors whenever walking is beyond me. Second best – but still much better than nothing!

It’s really all a question of mindset. I try to enjoy the process of whatever I’m doing and not get too attached to my goals. If everything goes to plan, that’s a bonus. If not – what’s really lost? I’ve still been out in wild and beautiful country.

On the more practical side, I’ve focused a lot on ergonomics. The Aarn body-packs make load carrying much more enjoyable. The Pacer Poles are much the best designed and help conserve energy and protect a dodgy ankle. Low-stack zero-drop trail-shoes encourage a natural gait, which I find less tiring. They have also greatly reduced the frequency of ankle injuries. And of course, I’ve been getting somewhat obsessional about lightening my load. The combination has greatly extended my ability to enjoy the hills when I’m feeling iffy.

And finally, I’ve done a lot of study and experimentation about smart ways to exercise and keep my muscles in half-decent shape without undue fatigue. But that’s a big topic – ping me if you’re interested.

[James Marco]

Yeah, as I said, been there, done that. 99.9% of people on the trail never realize I have back problems, soo, I guess it is a hidden injury. Most of the time, I carry a UL pack, <10lbs base. Unless I tell them, most just assume I am out UL for fun, not “for cause.”

I have a couple suggestions. 1) Now that you are reducing your gear kit, you can likely pick up the load of the quilts, pads, tent…”Shared Gear.” This may end up with you carrying ~25pound loads for 3-4 nights out. Once you eliminate shared gear from her pack, you will find that there is little else she needs to carry: water bottles/treatment, snacks, a couple pieces of clothing, map/compass, etc. Her pack load can easily hit 5 pounds. As a corollary, a compression bag can be purchased to fit both quilts and sleeping cloths (long johns, socks.) It doubles as a pillow, so it is not just dead weight. Small items will also help keep volume down, and, usually weight. 2yds of duct tape will cover your first aid needs (with an ounce or two of alky.) Look for other ways to dual purpose gear and reduce it’s size/weight. 2) Most casual backpackers need about 1.75-2.0 pounds of food per day, usually calculated at 100C/oz. Increasing food density can help reduce carried food weight. Try to carry only things above 120C/oz. Potato Chips, Frito’s, etc are NOT something to be looked down on at 160C/oz. Little vegetable weight is a good goal. For up to a week, you don’t need vitamins and can substitute a few grams of vitamin pill. Roasts, steaks, etc can be had: dried, ground and mixed with Veg oil in a type of pemmican and can provide protein and Calories (about 60gm of protein per day per person at about 220C/oz. I know, mixing units…) Instant Cocoa is not real high but still provides 120C/oz and can be boosted with a half ounce of clarified butter or margarine. These are a few examples and a good starting point for a 10mi day (2500 C/day or 1pound per day per person.) (Olive Oil, is another easy add at around 1oz/day. Fats and oils provide about 250C/oz.) You should be able to carry a 25 pound pack and her carrying about 5pounds for 4 nights or a 40mi trip.

[Paul Wagner]

Just watched a documentary on 4-wheel Bob last night– an confined to a wheel chair who still tackles astonishing backpacking goals.  While most of the posts here seem to have come from those who share some physical issues, you might check out his story.  From the documentary, he is passionate about getting people with disabilities out into the wild…including adapting technology to make life easier on the trail.

here’s a link to one story:  https://www.outsideonline.com/2278771/bob-coomber-wants-cross-sierras-wheelchair

[Brett A]

@balzaccom,

Wow!  I find stories like this so inspirational and, at the same time, a way of keeping things in perspective.  A reminder that there are those who are finding ways to overcome far greater challenges than myself.  There’s a lot to be gleaned in just watching how those with physical challenges adapt, regardless if you face the same challenges yourself.

Another thing I’ve come to realize is its quite possible that I need to lean more on others.  Or more correctly, simply BE with others. Hiking with my wife or a friend has not only taught me that its okay to accept some assistance but allowed us to forge much deeper and meaningful relationships. As much as I dream about spending time alone on the trail, maybe what would benefit me (and them) in a much more lasting way is being on the trail together.

[Brett A]

@thoeny,

In the process of trying to lighten our loads we purchased an Exped dual sleeping pad and EE Accomplice dual quilt.  A bit of weight saved over two pads and quilts.  Of course, the two of you may prefer your own space.  Also, to echo @jamesdmarco ‘s tips about shared weight, my wife and I reduced our total pack weights to the point where she basically carries not much more than her personal clothing, toiletries, 10 essentials, and water.  While she could certainly carry more, I chose to be the pack mule.  Not so bad now that we’ve got our loads down to a reasonable amount.  The trade off being that she handles boiling the water!

[Elliott Wolin]

One of the many reasons my wife and I took up kayaking is the possibility that eventually we won’t be able to hike much.  Paddling is very gentle on the body, although you need a little upper body strength and a bit more of stamina.

And you get to see everything from the other side, from the perspective of being on the water rather than being in the woods.

[Brett A]

Arkansas and Missouri do offer many great opportunities for floating, which can often be combined with hiking/backpacking.  Hike upstream and float back.  The Courtios section of MO’s Ozark Trail is one example.  The Buffalo River Trail in AR might be a good option.  Lots of outfitters to help out if the need arises.

Look forward to hearing how things go.

[Geoff Caplan]

Brett

Another thing I’ve come to realize is its quite possible that I need to lean more on others.  Or more correctly, simply BE with others. Hiking with my wife or a friend has not only taught me that its okay to accept some assistance but allowed us to forge much deeper and meaningful relationships

That’s interesting, because I’ve generally taken the opposite approach. On the whole I go out alone so I don’t feel pressure to meet other peoples’ goals. That way I can pick my route and my pace or even bail out depending on how I’m feeling.

It seems to me that if you go out with others when you are walking with a disability you need to be confident that they will be sensitive to your limitations. Otherwise you could end up over-extending yourself so you don’t feel you are spoiling their day.

If you have a walking companion who is happy to fit in with your needs, you are fortunate indeed!

[Brett A]

@geoffcaplan,

Yeah, I see your point. Fortunately, my gait and balance are not severe enough to negatively impact my hiking partner’s experience. Well, I sure hope not anyway! I guess to say it another way, besides being a bit of a klutz, I’m able to hike just fine. When it comes to tasks that require fine motor skills such as tying knots, safely boiling water, etc, that’s when things get challenging. Those are the times where my frustrations have led to some conflict.  It’s been a learning experience, for sure.

My wife is a saint for putting up with me.

[Eric Blumensaadt]

There is one disability I forgot to mention. All 10 of my toes are always “asleep”, i.e. they feel numb due to an L4 &L5 disc compression problem.

As a result I have to buy backpacks that have a slightly longer torso than I would normally use so that virtually no weight is on my shoulders and all is on my hips via the frame/hip belt connection. It’s a way to cope that has worked well or a few decades. If yo have a spinal disc bulge problem this may work. YMMV.

[AK Granola]

One of the tough things about doing any outdoor or active hobby with a disability, is that your doctor may not really get the point of what you’re trying to do, and may even unnecessarily discourage you from doing it at all. A friend of mine with a heart arrhythmia, when the condition was first diagnosed, was told not to go mountain biking, but to “just stay home.” That was not going to happen. Had to find a cardiologist who helped athletes with heart issues, people who were not going to sit on the bench. Instead of banning activity, the new doc simply gave guidelines for what to watch out for, outlined risks, advice for specific situations, etc. It helps to get advice that corresponds to the condition you have, from someone who knows and understands why you want to keep living your life to the fullest. My friend was diagnosed 21 years ago and is still mountain biking 3+ times a week, on some serious hard rides.

[Brett A]

I’ve run into the same thing.  The difficulties I encounter as a result of my condition while backpacking are not bad at all.  Certainly not insurmountable.  As mentioned above, I’ve been able to make some easy adaptations to keep doing what I love to do.  Performing tasks in the “real world” is where things really become problematic.  My job requires a good bit of typing and hand writing, things that are becoming very difficult or impossible.  Typing this response has been interesting :)  Voice recognition software such as Dragon work ok for such things as email or Word documents but not so much with the proprietary software we use at work.  I’m fortunate to have people I can hand off much of this type of work to.  I use to program a lot and I miss the days of slipping into the “zone” and hammering away at the keyboard.  Kind of therapeutic!  Its a bitter pill to swallow when you use to able to type a gazillion words per minute and can’t manage ten now.  Playing (ok, attempting to play) guitar is something I miss as well.

After trying numerous medications with no noticeable benefits, my neurologist sent me to be evaluated for Deep Brain Stimulation, the most common surgical procedure for treating Essential Tremor.  Leads are implanted deep in the brain in a portion of the Thalamus.  After exiting the skull, the leads are ran under the scalp, down the neck, over the collarbone and attached to a stimulator implanted in the chest, similar to a pace maker.  The current sent from the stimulator to the brain basically offsets the messed up signals being sent to your hands.  Very invasive procedure(s).

So I already had a good idea going into the evaluation of what would be done and had serious concerns about the leads and/or stimulator being damaged by wearing a pack.  If that were to happen more surgery would be required to repair things.  I expressed these concerns to the neurosurgeon.  He simply told me that backpacking is something I should probably avoid altogether.  He had just performed an extensive repair on a gentleman who had his leads broken while riding a roller coaster (caused by contact with the shoulder harness).  He said he only had so much latitude when it came to locating the leads and stimulator and that even if the leads didn’t get damaged, I would likely experience a lot of discomfort and irritation from a strap rubbing back and forth over them.

That was all I needed to hear.  I wasn’t going to stop backpacking for anything.  At least not due to the DBS procedure.  At this point, I’m holding out for Focused Ultrasound, a newer non-invasive procedure, to be accepted by my insurance.  In the meantime, it’s been all about acceptance, adaptation and being grateful for what I have and am able to still do.  In the vast configuration of things, this is nothing!

[Author]

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