Steve SalingSteve Saling (born 10 September 1968) moved to Boston in the fall of 2005 after living in Italy for over a year. He first had trouble holding a pen or pencil in the grip of his left hand around that same time. A year later, he had a fulfilling career as a landscape architect, a son, and a diagnosis of ALS. The diagnosis came on October 13, 2006. His son, only a month before. He would retire from his professional practice 5 weeks later to enjoy his remaining months of unassisted mobility. Early in his transition to quadriplegia, Steve became partners with the CEO of a celebrated, non-profit nursing home and created the world's first fully automated, vent ready, skilled nursing residence where the severely physically disabled have the opportunity to maximize their independence and productivity. Not content that so few people in the ALS community had the options he had, he founded the ALS Residence Initiative (ALSRI) to advocate for replication of homes like his.
*The background video on the home page is Steve's 1st ever skydive in Florida just over 3 months after his diagnosis. |
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Advice for the newly diagnosed
If you have been recently diagnosed with ALS and are browsing the internet looking for information, you have no doubt seen that there is a lot of gloom and doom about your future. There are certainly tremendous challenges in living with ALS but if you are willing and determined, you can survive for the long term. The keys are your willingness to embrace technology and the availability of compassionate caregiving to meet your needs which will increase as you become progressively weaker.
The #1 thing to keep in mind is that no matter how devastated you feel, it will be worse for those who love you most because they have no control. You, at least, have control of your attitude and that is everything when it comes to long term survival. Your loved ones will most likely reflect your attitude. If you are angry and bitter, which you have every right to be, you will be an unpleasant person for whom to care. Find a way to accept your fate and be proactive in mitigating your progressive disability by any means possible. ALS is no picnic but neither is it a death sentence.
A trap that many pALS and their families fall into is putting too much hope and expectations on a medical breakthrough that will cure you of this disease. Every couple of years there is a new fad in the ALS community that is supposed to make a difference but time and again, it is proven otherwise and fades away. You should be hopeful and optimistic that there will eventually be a medical cure but do not base your happiness on such an expectation. It is an emotional roller coaster getting your hopes up every time a promising drug is going through trials. Be hopeful that medicine will one day alter the course of the disease and prolong life but in the meantime, embrace the only thing that ever has - technology. Until medicine proves otherwise, technology IS the cure.
The #1 thing to keep in mind is that no matter how devastated you feel, it will be worse for those who love you most because they have no control. You, at least, have control of your attitude and that is everything when it comes to long term survival. Your loved ones will most likely reflect your attitude. If you are angry and bitter, which you have every right to be, you will be an unpleasant person for whom to care. Find a way to accept your fate and be proactive in mitigating your progressive disability by any means possible. ALS is no picnic but neither is it a death sentence.
A trap that many pALS and their families fall into is putting too much hope and expectations on a medical breakthrough that will cure you of this disease. Every couple of years there is a new fad in the ALS community that is supposed to make a difference but time and again, it is proven otherwise and fades away. You should be hopeful and optimistic that there will eventually be a medical cure but do not base your happiness on such an expectation. It is an emotional roller coaster getting your hopes up every time a promising drug is going through trials. Be hopeful that medicine will one day alter the course of the disease and prolong life but in the meantime, embrace the only thing that ever has - technology. Until medicine proves otherwise, technology IS the cure.
We are very privileged to live in a time of super powerful and super small computers and it will only get better in the future. One of the best ALS resources online is a website called www.PatientsLikeMe.com. It is strongly recommended you join and keep your information up to date. The site allows you to keep detailed information that allow you to track the progression of your symptoms to help you anticipate future challenges so you have time to prepare. The data you enter will be invaluable to you later on as you are able to recognize patterns and the data is anonymously compared to all other members so that researchers can look at the big picture. The site also allows you to find other members with similar symptoms, hence the name, so you can learn what works for them to give you more options. There is also a user forum which is arguably the best resource for living with ALS on the planet. Nobody knows better how to live with ALS than those living with ALS.
Another excellent resource for the newly diagnosed whose voice is still clear is www.ModelTalker.org. It allows you to create a synthetic voice that sounds very much like yourself. There may be a small fee to download the voice but you can preview it first. It is a time consuming process requiring several hours of reading and recording about 1700 phrases. Recordings are uploaded for processing and in return, you receive a SAPI5 compatible voice that can be used by any speech generating device. It is not as clear as the professionally created voices on the market but it will sound just like you which is pretty cool.
Having a positive attitude will help you have and maintain family/friends/happy caregivers and embracing technology will mitigate much of the physical disability you will experience. There are 2 dominant surgical procedures that would likely need to happen to survive ALS for the long term: getting feeding tube and a tracheotomy for vent use. It is rare that pALS survive without one or both of these procedures. It is a personal decision to undergo these surgeries but be advised to make the decision before it is an emergency situation. Be a good Boy Scout and "BE PREPARED!"
Having a positive attitude will help you have and maintain family/friends/happy caregivers and embracing technology will mitigate much of the physical disability you will experience. There are 2 dominant surgical procedures that would likely need to happen to survive ALS for the long term: getting feeding tube and a tracheotomy for vent use. It is rare that pALS survive without one or both of these procedures. It is a personal decision to undergo these surgeries but be advised to make the decision before it is an emergency situation. Be a good Boy Scout and "BE PREPARED!"
Architectural advice
Whether renovating your home to be accessible or designing from scratch, the choices you make now will probably affect the rest of your life. The Americans with Disabilities Act is a good resource but the A.D.A. are minimum standards, NOT recommendations.
The 2 most important things in a construction project to make a pALS life easier are a ceiling lift and a comfortable shower room. The ceiling lift should be a priority if you expect to survive ALS for the long term. It should connect the bed to the toilet to the shower and pass over a convenient place to position the wheelchair. A Hoyer lift is an alternative but not a very good one. The Molift Smart 150 is a great portable, electric lift. It is able to fold down and fit in a FAA approved, hard sided luggage so it is relatively easy to travel with.
The 2 most important things in a construction project to make a pALS life easier are a ceiling lift and a comfortable shower room. The ceiling lift should be a priority if you expect to survive ALS for the long term. It should connect the bed to the toilet to the shower and pass over a convenient place to position the wheelchair. A Hoyer lift is an alternative but not a very good one. The Molift Smart 150 is a great portable, electric lift. It is able to fold down and fit in a FAA approved, hard sided luggage so it is relatively easy to travel with.
Having a comfortable shower room is critical. There should be no tub or shower pan. The whole floor should slope to the drain. The bathroom should comfortably accommodate a reclined shower chair and the caregiver. 7 feet x 7 feet is the minimum recommended size for the whole shower room including toilet and vanity. It is hard to have too many weight bearing hand rails. They make good towel rods too. Think of the caregiver's support needs also. Check out a sample layout of a private bedroom and bathroom at the ALS Residence.
Automate as much as the environmental control as you can afford. Another thing to consider is a separate zone of the HVAC is the pALS bedroom. Based on the experience of living with a great many pALS, some get to where they like it hot (above 80) year round and others like it cold (below 70) year round.
Automate as much as the environmental control as you can afford. Another thing to consider is a separate zone of the HVAC is the pALS bedroom. Based on the experience of living with a great many pALS, some get to where they like it hot (above 80) year round and others like it cold (below 70) year round.
Recommended Standards:
- To the extent possible, make all accessible doorways 34-36 inches wide and your hallways a minimum of 48 inches wide.
- Limit or eliminate the use of area rugs.
- If you want carpeting, use low nap, heavy duty wall to wall carpeting with no padding.
- Pay close attention to the transition of flooring materials to make them as smooth as possible, especially thresholds at exterior doorways and into the bathroom.
- Not everything has to be accessible, like the kitchen for example. You do want access of course, but the usefulness of an accessible sink or stove is potentially very short lived. Building in as much independence as possible is recommended but you should consider the lifespan of the benefit and prioritize accordingly.
- When it comes to exterior spaces, while beautiful, brick or other unit pavers are not your friend.
- When using poured concrete, it is critical that you saw cut the control joints instead of using a trowel.
Current technology used
Steve has extensively modified his power wheelchair and communication device to maximize his independence. Despite his near total paralysis, he can recline his seatback to an increasingly small zone/sweet spot where he can balance his head without support. He can also push up with his legs. By combining these 2 abilities along with some creative engineering, he is able to maintain maximum independence with his wheelchair and computer. Should these abilities fail him as would be expected, he is prepared to maintain his mobility and communication through a strong and controllable twitch in his left pinkie. Steve holds Stephen Hawking as his inspiration as someone who has accomplished more with the twitch in his cheek than most able bodied people could dream of accomplishing.
WHEELCHAIR
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COMPUTER
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*Courtesy of Team Gleason
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The nice thing about the Positioner Mount is that you can rotate the computer around 180 degrees and lock it for use in bed. Having the chair elevator is almost essential for this tip to be functional and Medicare does not pay for it.
To create the mounting board, Steve designed a template using AutoCAD that was printed out so that a craftsman could build it. The plexiglass board is just sandwiched between the mounting plate and the back of the device. The Dual Lock Tape is like the stuff on the transponders you put on your windshield. It is excellent for mounting accessories to a communication device. |
Steve uses an open source program called Dasher to communicate. Dasher is an alternate way to generate text and will one day have a page of its own on this website. One of the newest, most dramatic features of this command center is the forward facing display. It is the brainchild of the Cope Bros. of TEAM AMERICA fame. The display shows the text being generated by Dasher so that Steve can have face to face conversations instead of everybody standing behind him.
Because Steve has the ability to finely control his power wheelchair seat position, he can find a sweet spot where he can still lift his head forward off the headrest but still back enough so that gravity holds his head back. This ability allows allows him to use a HeadMouse with great precision and accuracy. He frequently uses PhotoShop and AutoCAD and is solely responsible for the creation of this website.
Because Steve has the ability to finely control his power wheelchair seat position, he can find a sweet spot where he can still lift his head forward off the headrest but still back enough so that gravity holds his head back. This ability allows allows him to use a HeadMouse with great precision and accuracy. He frequently uses PhotoShop and AutoCAD and is solely responsible for the creation of this website.
Legislative priorities
This page is dedicated to promoting federal legislation that will benefit pALS quality of life or for medical treatment. Please review each and contact Congress to voice your support. If you know of legislation that is not listed below, please email the information to [email protected].
Tips for flying with a power wheelchair
The #1 tip is to find a non-stop flight if it is at all possible. The chance of damage goes down the less your chair is handled. When you check your bags at the terminal and maybe again at the gate, they will ask about your wheelchair batteries. Tell them it is a sealed gel battery (dry cell) and DO NOT let them take them out. Be sure to give yourself at least 3 hours because security will take longer and you may need extra time to get your chair ready. Check in at the gate check-in desk as soon as they open to be sure the aisle chair is there and they will likely switch your seats to the front row. They will board you before everyone else. You will be first on and last off.
Prepping your chair will increase your chances of not getting back a broken wheelchair. Any computer mount should be removed. Anything that sticks out like lateral supports should be made to not stick out or be removed. Removing a head array headrest is critical but it is recommended to remove a regular headrest in any case. You should have an empty duffel bag in your carry-on luggage for everything you will take off your wheelchair. Make sure to bring all of the tools you might need. Bring duct tape to secure any loose wires. You want to make your wheelchair as much of a block as you can. It WILL be manhandled.
You can drive your wheelchair down the ramp to the plane. They will transfer you to a skinny wheelchair just outside the door to the plane. It is strongly recommended to take your wheelchair seat cushion to sit on in the plane. The airlines staff will physically lift you to transfer you to your seat. They tend to screw up your clothes during the transfer so you will want them adjusted by your caregiver. Be sure to have worked out a way to communicate if that is an issue. It is recommended to have an alphabet board as back up and a clearly understood signal that you need it. The airlines do not allow any positioning straps without FAA approval so if you have poor core strength, you should expect a less than comfortable flight. If at all possible, your caregiver should be prepared to help you stand or be lifted out of your seat to relieve the pressure on your butt from time to time during your flight. The flight attendants will probably help if asked. You may have to grin and bear it. Make sure you come prepared with a leg bag AND a way to empty it or have some other pee strategy.
When you land, it will take them 20 or 30 minutes to get your chair to the door of the plane. You will be the last people off the plane and you may need time to reassemble your chair but that is much better than having a broken part. If something is broken, be sure to report it to the baggage office. They are usually very willing to accept responsibility and to authorize repair but that is of little comfort if the chair is inoperable. This is why the time consuming preparation of your chair is so critical. Even if your chair is undamaged, keep the deboarding delays in mind when coordinating your pickup. If someone is meeting you in baggage claim, make sure to describe your luggage to them so they can get it. There is a good chance that you will be so late that your luggage carousel will be closed and you'll have to go to that airlines baggage office to claim your stuff. If you are being picked up at the curb, adjust your pick up time at least an hour later than usual. Enjoy your flight (or at least your destination).
DISCLAIMER: The experiences described herein are based primarily on JetBlue Airlines. That it generally describes an industry standard is an assumption.
Prepping your chair will increase your chances of not getting back a broken wheelchair. Any computer mount should be removed. Anything that sticks out like lateral supports should be made to not stick out or be removed. Removing a head array headrest is critical but it is recommended to remove a regular headrest in any case. You should have an empty duffel bag in your carry-on luggage for everything you will take off your wheelchair. Make sure to bring all of the tools you might need. Bring duct tape to secure any loose wires. You want to make your wheelchair as much of a block as you can. It WILL be manhandled.
You can drive your wheelchair down the ramp to the plane. They will transfer you to a skinny wheelchair just outside the door to the plane. It is strongly recommended to take your wheelchair seat cushion to sit on in the plane. The airlines staff will physically lift you to transfer you to your seat. They tend to screw up your clothes during the transfer so you will want them adjusted by your caregiver. Be sure to have worked out a way to communicate if that is an issue. It is recommended to have an alphabet board as back up and a clearly understood signal that you need it. The airlines do not allow any positioning straps without FAA approval so if you have poor core strength, you should expect a less than comfortable flight. If at all possible, your caregiver should be prepared to help you stand or be lifted out of your seat to relieve the pressure on your butt from time to time during your flight. The flight attendants will probably help if asked. You may have to grin and bear it. Make sure you come prepared with a leg bag AND a way to empty it or have some other pee strategy.
When you land, it will take them 20 or 30 minutes to get your chair to the door of the plane. You will be the last people off the plane and you may need time to reassemble your chair but that is much better than having a broken part. If something is broken, be sure to report it to the baggage office. They are usually very willing to accept responsibility and to authorize repair but that is of little comfort if the chair is inoperable. This is why the time consuming preparation of your chair is so critical. Even if your chair is undamaged, keep the deboarding delays in mind when coordinating your pickup. If someone is meeting you in baggage claim, make sure to describe your luggage to them so they can get it. There is a good chance that you will be so late that your luggage carousel will be closed and you'll have to go to that airlines baggage office to claim your stuff. If you are being picked up at the curb, adjust your pick up time at least an hour later than usual. Enjoy your flight (or at least your destination).
DISCLAIMER: The experiences described herein are based primarily on JetBlue Airlines. That it generally describes an industry standard is an assumption.
Date |
Title of Article (Download PDF) |
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Sep 28, 2008 |
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Dec 5, 2009 |
MDA Newsmagazine |
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Jan 12, 2010 |
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May 7, 2010 |
Hingham Globe |
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Aug 14, 2010 |
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Aug 19, 2010 |
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Feb 11, 2011 |
Leading Age Blog |
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May 2, 2011 |
McKnight's Long Term Care News |
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Sep 1, 2011 |
MDA Newsmagazine |
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Oct 18, 2011 |
CE Pro |
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May 8, 2012 |
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Oct 3, 2012 |
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Aug 13, 2014 |
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Feb 12, 2016 |
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Jul 6, 2016 |
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Jul 6, 2016 |
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Jul 8, 2016 |
A+ Positive Journalism |
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Jul 19, 2016 |
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Aug 1, 2016 |
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Dec 22, 2016 |
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Mar 27, 2017 |
Fox 5 New York |
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May 1, 2017 |
HME Business |
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Sep 3, 2017 |
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Dec 11, 2017 |
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May 3, 2018 |
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May 7, 2019 |
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June 10, 2019 |
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Nov 7, 2019 |
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Nov 11, 2019 |
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Dec 10, 2020 |
Jewish Journal |
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