Archive for the ‘Life hacks’ Category

I am always been warned to watch out for pressure sores. Fortunately, knock on wood, I have not experienced any severe issues. I like to think that perhaps it is a result of precautions I take. Padding where bones impact hard surfaces is  key. My favorite cushions are made by a company called Roho. They have air bladders in them which can be inflated or deflated as needed. They also come with a pump. While these may be a little pricier than other cushions … they are worth it.. I will include a link  to the ones I use , in the sidebar

A simple device mounted to your wheelchair or table will keep liquids accessible. I have found this  device helpful as it also can act as a holder for the sip-n-puff straw attached to a vent such as the trilogy. You need to add your own clamp or strap to attach. The ability to bend it makes it possible to adjust it for your needs
Check the link in the sidebar for details.

Part of the good, the bad and the ugly of ALS is that the mind is unaffected. Using your mind to control your body without the help of muscles is a big dilemma. Thoughts of helplessness can increase stress which is picked up by the heart and results in increasing heart-rate, blood pressure and body temperature. It becomes a vicious cycle.

If you still have control of speech, the “hey Siri” function of an iPhone or iPad is a lifesaver. My husband mounted an old iPad near the bed so that I can call out in an emergency and get help from anyone on my list of contacts. This does not require a Sim card or a cellular service plan. It does require access to the Internet. Calls can be made through FaceTime audio as one example or text-type messages sent via the message function. 
* “Hey Siri” is supported on iPhone SE, iPhone 6s or later, and iPad Pro (9.7-inch) without being plugged into power. “Hey Siri” is supported on iPhone, iPad, and iPod touch with iOS 8 or later while plugged in. Not supported on first-generation iPad, iPad 2, and first-generation iPad mini.

Siri is available on iPhone 4s or later, iPad Pro, iPad Air or later, iPad (3rd generation) or later, iPad mini or later, and iPod touch (5th generation or later) and requires Internet access. Siri may not be available in all languages or in all areas, and features may vary by area. Cellular data charges may apply.

Some features may not be available for all countries or all areas. 

… Staying connected to the  Internet becomes a lifeline when you can’t get out and about as you would like. Hours seem to melt away when you can explore the web. YouTube, Facebook, Amazon… The possibilities are endless.  

Having limitations on the use of your arms and hands make it seem impossible. I am able to stay connected to my iPad by adding a simple sling to the overhead patient lift I was already using for transfers.. By using the sling to suspend my arm from the lift, I can position my hand over the iPad sitting on my lap. The lift makes my arm weightless which allows it to float above my iPad. I can move my hand around and use my finger to navigate. I use an inexpensive glove with the index finger cut out, so that I can still place my other fingers on the glass for stability

Click the picture in the sidebar under ‘arm sling’ for a link to purchasing options.

Bed controls

Posted: April 1, 2017 in Life hacks
Tags: ,

The ability to change positions is very important especially to someone who cannot walk and move regularly. Movement is essential to preventing bedsores and skin breakdown as well as comfort. In a hospital bed, there are bed controls that allow you to raise and lower your legs as well as the upper portion of your body. Having limited arm and hand function such as those with ALS or other neurological conditions, makes operating the controls very difficult.
On an Internet search, I found a device , created using micro light switches allowing a very light touch to control one function of hospital bed motion. My husband created this box, using the micro light switches, wired directly into the hospital bed controller . The original hospital bed controller is still functional and can be used by caregivers to control the bed. Using the alternate controller, with a very slight movement of my hand, I can raise and lower the head of the bed allowing comfort and positioning for activities such as watching TV. I have found this to be invaluable. More information can be found here…




Phone communications

Posted: March 27, 2017 in Life hacks

The hands-free , BlueAnt button- free , Bluetooth earpiece for my phone allows me to make and receive phone calls purely by voice. A lot of hands-free earpieces make you push a button to activate a phone call which I can no longer do. This device is activated by the use of turning my head to connect my earpiece to within 1 inch of a magnet. My husband installed the magnet in the headrest of my wheelchair. To answer an incoming phone call, you simply say “answer”.
I feel much safer with this device now as if there were an emergency and I needed to call 911, I have that ability. I feel connected to my friends and family also as it’s easy to call and respond when they call.



.Entertainment control

We are at the beginning of a new age in communication and voice control devices. With the recent update to Amazon Alexa which allows it to communicate with a device called the Harmony hub, it is possible to mimic a TV remote solely with your voice. By connecting these two devices with your wireless system, you can control a smart TV and cable box by voicing it to turn on and off, change channels and change volume. Future updates to Alexa and Harmony may allow one to control streaming services such as Netflix and Hulu. For someone who cannot push buttons such as on a physical remote control, this is a game changer