Saturday, 4 January 2014

MND


Here are some links to accompany my video

The Fiat Doblo In Front instructions are here which explain the wheelchair loading procedure

Fiat Doblo In Front instructions

The narrative for the video is here

Video Narrative

The company who write The Grid 2 software and supply a wide range of communication devices including eyegaze systems are Smartbox. I can't recommend them highly enough. Absolutely superb.

http://www.smartboxat.co

The wheelchair computer mount and power supply which powers USB devices were supplied and fitted by Smile Rehab. They also supply a wide range of products including wheelchair controls. They are very helpful.

http://www.smilerehab.com/

The company who do the Fiat Doblo conversion are Wilson Healey
but they now sell the vehicles through Accessible Vehicles
http://www.accessiblevehicles.co.uk/

My Wheelchair
Invacare tdx-sp


This is the standing hoist I use. It gives excellent leg support

sara 3000 standing hoist

I didn't demonstrate my toilet for obvious reasons, but here are the details

http://www.clos-o-mat.com/

The software I use to control the other computers is Dameware Mini Remote Control. It's gone up in  price considerably recently, but if you need to regularly control other computers, this is much better than Teamviewer or log-me-in, because no user intervention is required on the remote computer, it doesn't even need to be logged in.

mini-remote-control

These are the details of the bed

volker-3080-bed


Tacky Spray
stickum


.


6 comments:

Unknown said...

Thank you so much for the video. I have PMA/PLS and I am struggling with all of this. As my body weakens and I become more dependent on my family, I want to know what is available to assist in my living with this disease. I am still working as a school teacher from my chair. The hardest thing is the mornings and getting prepared for school. Also, potty breaks at work are so dicey and scary as I have assistance from a fellow teacher. I am 45 and have 3 children with my wonderful husband and number one caregiver. Our children are 24, 21, and 13: boy, boy, and girl. As you, I fight to live with this and thank you for your information.

John Snyder said...

Steve, this is an exceptionally fine piece of work in such a compassionate way to share what you've learned. I was diagnosed in 2011 with limb onset, and I have had to figure out solutions on my own to many of the things you address in your video. I'm just in the process of buying a better bed, and your suggestion about getting a remote controllable one may well change my choice of bed. I also love the bits that you have improvised yourself, such as the chin rest and the solution to foot and heel pain. That's something I'm also struggling with. I'm scheduled to have my feeding tube placed next month, so that part of the video was also of great interest. My hands and arms are almost completely inert, so I'm about to try and neck harness and headset array that would allow me to drive my wheelchair with my lower lip and buddy buttons on the headrest. I can't say I'm looking forward to it, but I suspect it will be like all the rest of these technologies – at first daunting, and later just second nature. We human beings are so marvelously adaptable! Again, just a superb offering and greatly appreciated.

One problem my PT and I recently solved: I had been having increasingly severe and debilitating pain in my hip joints, making it difficult for me to even sit in my wheelchair. It often followed me into bed and made me miserable there, as well. I purchased a high-tech Roho wheelchair cushion, but still too much pain. The PT suggested that part of the problem might be that because my legs are so weak my legs were splayed out with knees far apart, putting unnatural stress on my sitting bones. We tied a scarf around my knees to keep them about 6 inches apart, and it has been so helpful. I still get uncomfortable from time to time, but I can sit in the chair comfortably for quite a while now, and nighttime is better.

Your blog has a new follower.

John Snyder
Austin, TX
jsnyder@pobox.com
ordinarypersonslife.com

Kristina said...

Thank you so much for your helpful video and tips. You've done an excellent job assessing, refining and articulating the needs of a person with ALS. I also appreciated your wry humor... keep smiling! :-)

Motor Neurone Disease said...

আমি এই রোগে আকরান্ত

Motor Neurone Disease said...

Please কিছু করুন আমাকে সুস্থ করার বুদ্ধি দেন

Motor Neurone Disease said...

Please কিছু করুন আমাকে সুস্থ করার বুদ্ধি দেন