Gliding with Parkinsons

[jrmiller]

Greetings, I nnow have Segged for about a month and with my Parkinsons I was not able to walk unassisted and stares were frequent. My balance was begining to be a problem also. I now have my mobility and balalnce back while traversing with my HT! I am constaantly besieged with the curious and questions. I am amazed at the product recogntion. It is usually within a minute or two of unloading the HT that someone comments about the"thing I saw on TV". Parkinsons was getting me down, but now I have a large part of my life back. I can rejoin my wife and daughter on their trips to the malls antique shops and flea markets to mention a few. Thank you Segway !!! There are many others like me who are not ready for a wheel chair that fit into an HT nitch. How about it LLC, interested in a spokesperson with a disability ? The HT worked for me. IF you know anyone who may have a question, let me try and answere with my own expereience. GlIDE ON !!! JR

[alison]

Hi,
Some day soon I hope to glide also. You are very encouraging! I have been paralyzed on my right side for 42 years but am healthy and get around. Contacted a young woman in my area who was born with spinal-bifida and has a segway she uses to get to work. She uses the subway with her segway.

The Washington Post had done an article on her because Metro was giving her a hard time for taking the machine of the subway. She stuck by her guns and was supported by the Disability Rights Center, (H T was a disability assist vehicle). She took Metro and glided up to my home where she let me try it and I loved it.

[Neelix]

Alison, we are quite familiar with her. I dont' want to get into it, but ask someone about "Kinky" sometime.

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Fear not, for even though I come from the Forbidden City, I surely do not agree with the rules.

[ElectraGlide]

Hey JR ,

I've been riding my SEG for the past 3 months, almost daily, and of course with the Florida weather permitting. Are you anywhere near Boca Raton? I know there's gotta be others out here, but I have yet to see any other segway in south Florida.

Steve

[BruceWright]

Great news, JR!

I am really interested in the phenomenal ability of the Segway to operate with a person with Parkinson's. Do you find the tremors lessened when on the Segway? I've read that it does, but not being an expert on Parkinson's, I wonder if you could enlighten me.


-Bruce Wright

Segway: Vehicle of Dream

[terryp]

Today I met a man in a wheelchair who had lost a hip joint. After a number of operations, a specialist concluded that a hip replacement isn't an option for him. He's able to walk short distances with a cane and a special thick-soled shoe on his bad leg.

I let him try the Segway, and he did fine, and seemed pretty excited about getting one for himself.

Even though Segway says the HT isn't an approved medical device, I think more and more people with disabilities will discover that it can make a big difference in their lives.

Practicing Safe Segs in Seattle

[jrmiller]

Thank you all for your masseages.

alison - I think it will work for you. I have tried to Seg with one leg off the footpad, and did fine. Good luck and keep me posted!

ElectraGlide - I also have not seen another Segger. I live about 2 inches North of the Clearwater beaches in Palm Harbor. That is due West of Tampa on a map. If your in the area, look me up!

BruceWright - I have found that the tremors have lessened and my balence problems are not an issue while Segging. I had lost my ability to walk unassited. With the HT I can now join my family and not be a burdon to them.

terryp - Thanks for the note and keep spreading teh word to those of us with disabilities.

Let me know if you know somebody that may benifit from my experiences. Thanks JR

[jillmac]

JR - good for you! Isn't it amazing being able to joing in walks with the family again?

I am amazed that my balance problems when walking have not been a problem when Segging. I had thought that vertigo and dizziness would be a problem, but I have not had a single incident in nearly four months of gliding.

Linda (Lazarus) also has problems with dizziness and vertigo when walking but has not had a problem on the Segway.

I had been corresponding with another MS patient off the forum (he tracked me down through the forum though). He was unsure whether to make the purchase, but after many e-mails back and forth bought his Segway last week and is doing fine.

I am also waiting to see how my friend with the very pronounced mobility problems gets on with his. It arrived at the end of the week - but no training yet. He has ridden mine a couple of times for reasonable distances, but I have never told him how to switch it on or other important details.

Jill

Nothing is inexplicable, merely unexplained..... Dr. Who

[JohnHHarrington]

Neelix -- I might suggest you not allude to previous personal attacks that were exchanged between members of this forum. The dialog back then was closed, and your alluding to it is opening up closed wounds, and serves to do nothing but disparage an individual.

Happy gliding -- John

[BruceWright]

Agreed.

Let closed discussions remain closed, or all discussions will devolve into old arguments.

-Bruce Wright

Segway: Vehicle of Dream

[Neelix]

I wasn't trying to steer the conversation toward an old argument, but rather let our new forum member know that we have had a previous interaction (not indicating whether it was positive or negative, notice) with the young woman she speaks of.

I assure you, there was no malicious intent whatsoever.

And now that I have explained my side of the story, lets get back to the real topic of the thread:

Jrmiller, I am so excited that it is working out for you. I remember when you first entered the old dinosaur of a chat room that we had here, looking for someone with information about using an HT with parkinsons. I am thrilled that people are using the HT as an assistive device, as this is not only improving their lives, but will no doubt improve the public's stance on the segway, allowing able bodied people who use it as an alternative vehicle to have more freedoms when riding their Segway.

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Fear not, for even though I come from the Forbidden City, I surely do not agree with the rules.

[chovey]

Hi there,
Until Segway my MS had limited me to getting around in a car. Now I've been gliding around NYC for about two months and like you I feel that many of the enjoyable parts of life are doable again. However I do tend to get looks which imply- spoilled brat- or some even say get a horse you lazy so and so. So far however the most often heard comment is.... COOL!! I wonder what kind of signage would appropriate for Segging disableds to display so peolpe would understand what we're up to? Any thoughts?
quote:Originally posted by jrmiller

Greetings, I nnow have Segged for about a month and with my Parkinsons I was not able to walk unassisted and stares were frequent. My balance was begining to be a problem also. I now have my mobility and balalnce back while traversing with my HT! I am constaantly besieged with the curious and questions. I am amazed at the product recogntion. It is usually within a minute or two of unloading the HT that someone comments about the"thing I saw on TV". Parkinsons was getting me down, but now I have a large part of my life back. I can rejoin my wife and daughter on their trips to the malls antique shops and flea markets to mention a few. Thank you Segway !!! There are many others like me who are not ready for a wheel chair that fit into an HT nitch. How about it LLC, interested in a spokesperson with a disability ? The HT worked for me. IF you know anyone who may have a question, let me try and answere with my own expereience. GlIDE ON !!! JR

[pam]

Some people use their disabled sign from the car. I can't remember if in NY the plates actually have the little disabled icon on them (I left there in the mid-90's.) In Florida, you have to get a little sign that you hang from your rear view mirror when you park in a disabled spot. Something like that might work.
Pam

[Lazarus]

Great--isn't it--to be out and about and free?!

I posted a news article recently that a local paper had done on me--my MS--and my Segway. I actually have a question to post. I wonder why it is that I could not stand for 2 hours but I can stand on my Segway for 2 hours. Anyone have any ideas?...Linda

[pam]

Maybe because you have to fight for your balance on the ground, but don't have to do the same fight on the Segway? You have something to hold to (the handlebars) and if your body makes little fidgets, the Segway compensates, rather than you having to do it? That would be my guess, but you know, I'm not a doctor and don't play one on TV. <G>
Pam

[jrmiller]

chovey ..... When I Seg I "look normal" but when I stop and get off the HT it becomes apparent that I am not "normal". I agree it may be tough at times to shed the "spoiled" image. A laminated copy of a handicapped sign SECURELY attached in plain view may help, but if not secured, it may disappear.I get an overwhelming amount of positive comments that if a negitive one would come along, just take it with the grain of salt, there are always going to be some of thoes types out there with nothing nice to say.

RE:tremors I can not explain the reason for the reduction in observable tremors. Maybe it has something to do with brain distraction. Maybe someone knows a Neuroligist out there that might be able to explain.

Pam The sign is a good idea but I again refer to the theft issue. A securly attached sign would help but I would make it a copy of the original if laws permit.

Thank you all gor your comments, keep them coming , pass on the good word, and GLIDE RIGHT. JR

[pam]

Yes, a copy would be good. You can get color copies in various places. Theft is always an issue, but if you're on the Segway, it shouldn't be taken, and if you get off the Segway, you could take it with you. It could be laminated.<G> So, JR, I know you're north of Clearwater - getting any blowback from Bill? We've had rain for 2 days, and I was amazed at the amount of wind this morning. It really sounded like *we'd* been hit ith the tropical storm, not LA. Wayne, are you ok?
Pam

[jrmiller]

Pam, good to hear from you, we had a strong storm, wind and rain, Sun night but have not had anything serious since. Our area of FL has been extremely fortunate and has never been hit with a hurricane, close a few times but always spared!! How's thee segging going...I'm usualt swamped with the cioriuss and questions. SEG-ON ... JR

[jillmac]

I Velcro my cane to my steering colum - it's right up there and center. If this is not convenient I use a folding cane and have it sticking either out of my backpack on my back or out of the bag on the handlebars. This seems like a reasonable way of announcing that you are using it for mobility problems.

Some of you who have posted here - could I ask you also put add your experiences to my post regarding those who have a disability and have been helped by the Seg.

I would like to compile a list of experiences by ANYONE who has problems and has found some sort of liberation by buying the Seg.

I'm not quite sure how I am going to put this to work yet, but I certainly want to become more proactive with places like the MS Society, the AARP, Liesure World and many other groups that could benefit from use of the Segway. Having everything on one post would help me tremendously rather than having to do searches all over the forum.

I mention on the other thread the huge numbers of what Ralph from this forum calls the 'Invisible Disabled' meaning people who in the generally accepted idea of being disabled do not 'qualify' but are just the same, impacted from a health condition. Asthmatics, CFS, old age creeping on, just stiff joints etc. etc. All these things, and a lot more besides disable you from enjoying life to its fullest, but don't necesarily qualify you for a blue parking placard so...... you are the Invisible Disabled. Ralph really intruiged me with this term because I strongly believe that there are MORE people who belong in this category than those who are 'qualified.'

These people can benefit hugely from the use of a Segway.

Of course, I know of many of you who have posted here for a while, but [u]I would still like you to post your positive comments (negative too if you have any</u>).

Thanks
Jill

Nothing is inexplicable, merely unexplained..... Dr. Who

[alison]

The Seg is universal! Glide with courtesy and respect--

I like your idea Jill. A place to share enabling information would be great for all!

Alison

[Linc2000]

If anyone needs a free demo in San Diego to decide if the Segway is right for them I would be happy to meet them and let them try mine. There is also a place at Belmont Park where they rent Segways. Linc2000@msn.com or 619-575-0133. Lincoln [8D]

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[planetmoto]

As well as our activities this side of the pond with able bodied we have also demonstrated the Segway to a number of Parkinsons groups. So far we have come across no member who has been unable to use the Segway. Infact, my own mother who is 82 and a Parkinson sufferer has also been pusuaded to use the Segway. She has a condition which means that she has no feeling in her left leg, and also suffers from vertigo. She would willingly use a Segway every day, but she is afraid that her condition may worsen to the stage where she could no longer ride. The only issue with Parkinson and MS is the unpredictability of the illness, and therefore we have found that some people have baulked at the investment. We have made the Segway available on a lease, and this allows people to committ to the Segway for a year, and then release year by year.
Clearly, the Segway offers a number of benefits to the mobility impared. One which seems to be often missed is the fact that the Segway does not have the stigma of the wheel chair or electric buggy. The Segway does not say 'I am disabled'. Whilst there is much less prejudice towards the mobility impared than in the past, it sadly still exists. The Segway allows the glider to throw away the disabled label.
Finally, with regard to the legislation here in the UK, we beleive that there is a stong arguament for the Segway to be regarded as an 'invalid carriage'. This cumbersome description covers all mobility assisstance vehicles. WE have been in touch with Segway to discuss this issue, but to date have not had the opportunity to develop these discussions further.