Proud Papa Considering Segway for MD boy(s)...

[dnikora]

Hello Everyone,
I am the proud papa of 2 very fantastic boys. Unfortunately both were diagnosed with Muscular Dystrophy a couple of years ago. Our family is entering into the period where my oldest is beginning to have some stamina issues with longer walks. Talks with the MDA and other doctors will only provide scooters, which both my son and I agree, are NOT conducive to emitting a cool and active lifestyle. Not only are they bulky and slow, but would restrict areas that he would otherwise be able to go.

So I scheduled an appointment at a "Segway Experience" here in Kansas city to see how my 9 year old would take to a segway...would he weigh enough...would he be coordinated enough...? I tell you this...that within 30 seconds of being on an i2, he was a master. He rode around KC's Union Station like a super hero. I couldn't tell you whose smile was bigger; mine or his.

To see the level of freedom he had on that i2, to be able to get on a tight elevator with a crowd of people, to maneuver it through a narrow doorway...after only 10 minutes of ever seeing one in his life, and for me to have to ask him to wait up for me for once...I tell you honestly I can't describe.

So now that the decision is obvious for us, we enter into the realm of bureaucratic nonsense and hair splitting. Since the segway isn't recognized as an official handicapped aid, the normal channels for assistance are "very" closed. I have registered on Draft and am researching possibilities for assistance, but I would welcome anyone with information that could point me in the right direction for organizations that may provide funding help.

Thank you to everyone...

Dustin
http://www.nikora.net

[Bob.Kerns]

Hello Everyone,
I am the proud papa of 2 very fantastic boys. Unfortunately both were diagnosed with Muscular Dystrophy a couple of years ago. Our family is entering into the period where my oldest is beginning to have some stamina issues with longer walks. Talks with the MDA and other doctors will only provide scooters, which both my son and I agree, are NOT conducive to emitting a cool and active lifestyle. Not only are they bulky and slow, but would restrict areas that he would otherwise be able to go.

So I scheduled an appointment at a "Segway Experience" here in Kansas city to see how my 9 year old would take to a segway...would he weigh enough...would he be coordinated enough...? I tell you this...that within 30 seconds of being on an i2, he was a master. He rode around KC's Union Station like a super hero. I couldn't tell you whose smile was bigger; mine or his.

To see the level of freedom he had on that i2, to be able to get on a tight elevator with a crowd of people, to maneuver it through a narrow doorway...after only 10 minutes of ever seeing one in his life, and for me to have to ask him to wait up for me for once...I tell you honestly I can't describe.

So now that the decision is obvious for us, we enter into the realm of bureaucratic nonsense and hair splitting. Since the segway isn't recognized as an official handicapped aid, the normal channels for assistance are "very" closed. I have registered on Draft and am researching possibilities for assistance, but I would welcome anyone with information that could point me in the right direction for organizations that may provide funding help.

Thank you to everyone...

Dustin
http://www.nikora.net

I've raised the issue with people in the MDA at the bottom of the totem pole, and gotten the same response as you. (I already have my Segway, so it wasn't a matter of helping myself out, but of exploring whether they were prepared to help others, as I, as do you, feel a Segway is a much superior solution to a scooter).

I'm interested in helping to argue the case that they should revise this policy and consider Segways as an alternative.

One point to remember -- there ARE no "official handicap aids". There is no such list. However, there is the matter of FDA clearance to marketing as a handicap aid. That is binding ONLY on the manufacturers and those acting on their behalf. It is NOT a barrier to use of any suitable device, nor to doctors recommending it, nor to the MDA recognizing it and offering it among their services.

It might be helpful if we knew whether there are other registered "members" (or whatever the terminology is -- that's that form they give you, with diagnosis, etc.), who currently use Segways. I believe I have seen reference to others, but I don't specifically recall.

I don't have MD, but CMT, a separate condition (neurological, rather than muscular) that falls under the MDA umbrella for some reason -- similar impacts on life, etc., I suppose.

[LibertySegway]

Your story made me smile. The Segway is an amazing equalizer. I wish you and yoour family all the best in your endevour. :)

[dnikora]

Thanks Bob. That's good information on the regulatory aspect of handicapped aids. Unfortunately, only time and (good) publicity will increase the sentiment that a segway IS a (superior) mobility device over a scooter based on standing ability.

I say "sentiment" because societal norms are almost inadept to change. An electric wheelchair or scooter is an obvious handicapped aid. There's no "regular" person that would ride around on those if there wasn't a real need, and thus the "regular" people can easily classify and delineate between the handicapped and everyone else. Since there are many non-handicapped people that ride Segways, that line becomes blurred, and the possible handicapped aid is viewed as an expensive toy by hind-sighted health care.

That blurred line is exactly what draws the mobility challenged to the device. The independance, freedom and the possibility of being viewed as a regular person.

OK...I'm off my soap box now...

Thanks Again Bob!!

[dnikora]

Thanks to everyone for the information provided. Now that it looks to be a foregone conclusion that I will be purchasing an i2 for my oldest son on my own, I'll be looking for the best deal possible. I see alot of "cheap" i2's on ebay. Many of them say 500 miles, 1400 miles... Is that alot? Are they on the verge of breaking down? Should I stay away from what seems to be a 1500 to 2000 dollar savings?

PS:
P.S. Our boys are in a clinical trial here at the KU medical center that maintains our hope high. Although not a cure, it would halt the progression, but the current reduced mobility would remain, thus the interest in the segway as more than a "short term" mobility aid.

Find out more here:
http://www.ptcbio.com/3.1.1_genetic_disorders.aspx

[wwhopper]

Make sure you connect with someone who will train your boys to ride the Segway.

We have a young man in Virginia with similar issues as your sons, it took a good day in training him to use the machine. (of course it has taken several years to teach his father - but that is another story :p)

Talk to some of the DRAFT people. Training is so important, probably more so than the deal on the Segway. Look for both!

Our Segway Chat members, many of whom will look at machines that you want to buy for you, and a number of them have experience in training people with mobility issues. Use them as a resource.

[Bob.Kerns]

Thanks to everyone for the information provided. Now that it looks to be a foregone conclusion that I will be purchasing an i2 for my oldest son on my own, I'll be looking for the best deal possible. I see alot of "cheap" i2's on ebay. Many of them say 500 miles, 1400 miles... Is that alot? Are they on the verge of breaking down? Should I stay away from what seems to be a 1500 to 2000 dollar savings?

PS:
P.S. Our boys are in a clinical trial here at the KU medical center that maintains our hope high. Although not a cure, it would halt the progression, but the current reduced mobility would remain, thus the interest in the segway as more than a "short term" mobility aid.

Find out more here:
http://www.ptcbio.com/3.1.1_genetic_disorders.aspx

The big variable would typically be the condition of the batteries. If it has gone for an extended time without being plugged in, the batteries could be dead and even unrecoverable. If it's old, the batteries may be near the end of their expected life. The batteries are expensive. However, the i2 model isn't that old, so even an old i2 should have some life in the batteries, if they haven't been neglected.

I have 1907 miles on my i2, purchased in July, 2008. I expect I'll be running around 3000 miles/year. Mine's still in good condition, though the front bag is beginning to disassemble -- it's seen hard usage. Fortunately, I got two of them, and I'll switch at some point soon.

The tires will need to be replaced about every 1500 miles, more or less, depending on usage. They're not expensive.

One thing to consider is warranty. As this will become a rather critical item for your son, being able to repair it in the event of any failures will be important to him. Weigh the savings, vs your ability to pay out-of-pocket for any issues that may arise. That said, the i2 is a pretty rugged machine.

There's a lot to say about training. This is a kid; he's going to act like a kid. Make sure he wears a helmet, and pay careful attention with him about what things could get him hurt.

#1 on the list would be cars.
#2 would be dropping a wheel off a curb, likely while screwing around, showing off, or simply not paying attention.

The rest of the list I'd round off with making sure he understands about traction and slopes and different surfaces and ground clearance. I've come off my Segway 4 times in >2000 miles. With one exception, these were all expected -- I was experimenting to find the limits. The exception: A bicyclist fell on me, and I could hit the dirt, or ride down the embankment into the canal.

The first time was from ground clearance -- which left one wheel without traction.

The second was a steep, dusty hill, where I lost traction. You need traction to balance. Very little traction if you're going at a constant speed and already balanced. But a lot more on a steep hill. Interestingly, I was not hurt in the fall -- but when I tried to get up, I slid DOWN that hill on my hands-and-knees, and got badly scraped up. So the Segway didn't do too bad, but beware of steep slopes with loose materials, wet leaves, etc.

The third time was the bicyclist.

The fourth time was in soft, deep slushy snow, trying to go up a (very short) slope.

The other category of falls that I've seen (on YouTube -- I've NEVER seen anyone else fall in person, though I've not watched a Segway Polo game), are collisions. Collide with a curb at any speed, and you'll go over and do a face plant. Run one Segway's wheels into another, and you'll go down, too.

I'd recommend a gradual program of exploration, gradually building up to going over small curb-like obstructions (not more than a couple inches, but less at first). And steep paved hills. Those will be scary at first, so build up to it.

Re: hills -- new people sometimes get rather confused by them. The basic issue, I believe, is that the contact patch on the tires -- the point over which you must balance -- is further back when going down, or further forward when going up. Especially as he is light in weight, he may need to shift his feet to the rear to go down, or forward to go up.

Gareth Brandwood has a little book you'll find helpful: The Unofficial Segway Code (http://www.legalisesegways.co.uk/SegwayCode.html).

[Bob.Kerns]

Hmm, Atalurn (PTC124) looks VERY interesting.

Unfortunately, it won't help me, as the genetic change in my case is more subtle. But a drug to override the false stop from a nonsense change is surprising and potentially huge across a wide range of genetic disorders! I'll be watching this one.

[KSagal]

Good luck to you and your family...

1. Be aware, and alarming amount of ebay segway sales are not honorable. Be very, very careful. Considering your position, you should at least check with the local dealers, and maybe they can help, broker, assesses, or otherwise aid your purchase, even if they do not have a machine they can sell you in your price range... They just might as well.

2. Your points about wheelchairs and scooters is more on target than you may know. There is a large pushback to handicapped people not looking sufficiently handicapped. There is a big effort among some sad ill-informed folks that are just not happy with people with challenges who do not look to be unhappy. It is just a sad fact. I offer this, not to be negative, but to warn you in the future, that your son(s) will be challenged constantly, even after you get the segway, not so much by mobility but by the ignorance and disrespect from some people...

Some here have posted that it was a burden to them to have to explain themselves and justify the segway. It is a small price to pay for the benifit of using a segway, especially as it may really fill a need, but it will be there for some time. (In a way that being in an electric wheelchair will never be there)

Again, good luck.

[segsurfer]

Hey Dustin, best of luck to you and your family. I already PM'd you on this topic, but seeing as you're a newbie and might not be familiar with the site's user interface just thought I'd let you know you have a PM waiting for you. Some general advice I would give you, is:

1) know your son's rights. Many people think they know the law, very few actually do so always be prepared with the local rules and regulations before going to a new place with the Segway. Going along with this theme,if you know you're going to a new place and their rules don't specifically address disabled Segway use, or if it's frowned upon but not necessarily banned outright, it's a good idea to write them a nice letter stating your situation and explaining that you will absolve them of any responsibility should anything go wrong as a result of the Segway and that you will make sure that your son uses a prudent speed given his surroundings. I know it's a hassle to have to go through those kinds of things just because people blatantly ignore the ADA, but you'd be surprised how far just a nice letter will get you. As the saying goes, the pen is mightier than the sword.
2) I already mention this above, but I cannot stress this enough, be sure that your son uses a prudent speed based on his surroundings. If you're on a busy sidewalk in the heart of midtown Manhattan and you're doing full tilt boogie at 12 1/2 miles an hour you're likely to get yourself a ticket, but if you're going the speed of the pedestrians around you the police are more likely to be lenient.
3)Get your son a handicapped placard; while it won't get you out of all the tough spots, it certainly helps dissuade idiots from making ignorant comments. Really nice placards can be obtained from
http://www.segcessory.com/
4)If confronted, play it cool and be as nice as possible given the situation. From there you can explain the ADA and whatnot.
5)When in doubt consult DRAFT's website; it is a tremendous resource, and I can tell you from first-hand experience that DRAFT's founders and members are incredibly passionate about helping the disabled Segway community.
5) Buy your Segway from dealer who can provide training to your son, there is no substitute for proper training, especially given the mobility issues faced by your son.I purchased my i2 from Segway of Annapolis,and they were a tremendous resource in ensuring that I was comfortable on the machine and ready for most everything I would face in my daily routine on the Segway. If the cost of the new unit is an issue, make your presence known to your local dealer and explain that you would like them to call you whenever they get used units in, that way you can pop over at a moments notice to inspect the unit.
6) Most importantly, have fun. Based on your initial description, it sounds like the Segway will be a wonderful thing for your son.I can only hope that it will bring him as much freedom and mobility as it has brought me.
-segsurfer

[mark1qhorsey]

Not to belabor the point but the PT will be the best fun your son
has ever had. He will be awesome. Make him wear a BMX helmet,
sport some rad colors, and trick the Seg out with whip flag, nice paint job and rad roto wheel covers - you get the drift. This machine ain't some capitalist tool for "commuting", it is a mobility lifestyle, ridin' the pavements and pathways
like a surfer he wants to be... Glide along with him, and you all will never forget it! :thumbsup: