Bobby has already written about our "Alphabet Game" for when he is not in front of his communication devices, you can read about it here. For a lot of people it can be hard or very tiring to for both the pAL and caregiver to figure out what is needed. I made up these categorized cheat sheets for Bobby and his caregivers or if/when he is in the hospital. I keep them in his care binder. I made them with Word.
For anyone who has tried using a eye gaze computer outside, you know that it is impossible. If you have some head movement there is a good option for you. The product is called glassouse. It is a digitally controlled Bluetooth head mouse. It will run you $400.00. Do note that this device comes from China and it will get held by customs for a week or two.
Losing the ability to control your environment sucks, but with a few easy adaptations you can get that independence back. All that is needed is a Philips Hue starter kit. They are available at home Depot or online. Once installed, go online and download a program called Huetro. It is free and pairs up easily. With this installed you will be able to control the lightning once again.
For those that are using a Microsoft surface as their communication device you know that the internal speakers are not very loud. This can be a dangerous thing if you're in a loud place and need to grab someone's attention. For that reason, I highly recommend getting a portable Bluetooth speaker. There are tons of different options out there. I personally have a Bose Sound Link and it is awesome for my needs. Plus you'll get to be a rolling dance party wherever you go!
These are the following products and how we use them to make Bob happy and comfortable when he is in bed. As always, ALWAYS ask insurance, your local ALSA chapter, your PT/OT team, and any other foundations you work with for these things first. Bobby and I have made many mistakes with just buying products first to find out they could have been given to us or covered by insurance. I have provided Amazon links as reference and last resort.
The first is we have a memory foam mattress and adjustable bed frame. Both of these we got from Sleepy’s although they are no longer carried there. It is important to have a memory foam mattress for two reasons; first it allows a more sturdy and even base for the special mattress pad we use and secondly it does not have pressure points from springs, which can contribute, to bedsores. Here are the links for the mattress and the bed frame PB873. The adjustable mattress frame is crucial to help in positioning. Our frame allows for head, lumbar, and feet adjustment as well as massage functions and has USB ports on the sides of the frames.
The mattress pad is really important for comfort and for the prevention of bedsores. The Roho products are individual chambers connected together so that as a pressure point is created the air moves in the adjoining chambers supporting that point rather than letting it sit on a hard surface. We have two Roho mattress pads on our queen bed. This allows for a seamless surface. One pad was covered by insurance and we purchased the second from Amazon.
A side note about the bed is about positioning. Bobby likes to sleep on his side but because we have a queen mattress and we share the bed, there is not enough room for him and me when we roll him towards the center of the bed. To compensate for this and to allow for an even amount of time on each side, we rotate the bed allowing him to change which side of his body rolls to the outside edge of the bed.
Many people ask us how does Bobby wake me up at night if he needs something. Before he lost the ability to talk he would yell or make some sort of sound. I used to be a very light sleeper and so this wasn’t much of a problem. Now he cannot make a loud enough sound and I have become a much heavier sleeper. Our solution we borrowed from a stay in the hospital. It is a metal touch sensor that clips to the pillow. It has an extremely loud piercing buzzer sound! We bought two from Patterson Medical before we thought to ask it to be covered by insurance.
The other tool we use currently in bed is a mechanical arm that holds his Tobii Dyvanx. We got this idea from fellow ALS Warrior Jay Smith. We have a bedside arm that came with the Tobii but we have found that the smallest movement (which is really easy to do) makes it unusable. This arm stays in position better and allows caregivers to access and attend to Bobby without fear of bumping the computer. Bobby recently wrote a bit about it here.
In the colder months here in Rhode Island Bobby likes to have heavy blankets on him that exasperates his foot drop. We combat this and make it more comfortable for in two ways.
The first is what we call a “bed tent”, it is a cage like arch that keeps the blankets from weighing down on his feet.
The other product we use is a pair of foot braces that are covered in UGG like material. They are really stiff and have hard plastic backing them to keep his ankles at a 90° angle. We got these covered through insurance.
Anyone that has ever tried to use a rolling computer mount in bed has probably been very frustrated by the experience. I personally was so frustrated with the alignment and calibration issues that I would almost never use it in bed. Then I was shown this by Jay Smith, I literally cannot recommend it enough. It is so easy to use my computer now.
The mount is available on Amazon for 249.89. I must say that it is a little challenging to install, so if you are not the most handy, they do have an option to have it installed for a fee.
We had a question on what the mount looks like and how we attached the Tobii to it. Below are two images showing what we did. The mount is for a TV but it does have some holes that line up. But the mount is thinner than the one the Tobii comes with so we added washers to help stablize it.
Benefits I have from my medical Marijuana
- Substantial decrease in muscle spasticity
- Gets rid of all muscle cramps
- Eliminates my nausea
- Increased appetite
- Decrease in excess saliva
- Decrease in muscular and joint pain
- Helps with sleeping
- Helps with anxiety
- Helps with inflammation and is a powerful antioxidant
- Helps with overall mood
For a little over a year now I have not been able to speak. I typically use an eye gaze device, however there are many times for whatever reason that I am unable to use this device. When that happens, I play the alphabet game to communicate. It is a very simple way to communicate. We have a small white board on my chair. It has this table taped on it.
So this is how it works. The entire alphabet is divided into subsections by the vowels. When we get to the set of letters that I want, I blink. Then we go through the subsections letters until I blink at the letter that I want. We then write that down on a white board I keep near my chair and repeat the process.
Zippers are a magical game changer.
When we travelled to the ALS Associations Advocacy Conference in Washington DC, the number one question and comment we got were, “Are those zippers in your pants? How did you get them?”
When Aly Cat, Bob’s care giver, and I were unable to safely transfer him on our own we need to use the assistance of a hoyer lift and sling. Before our routine was to stand Bob up, pull up/down his pants, and then place him into his wheelchair or onto the commode or bed. Using the sling we are unable to do this. The first two days we would transfer Bob out of his wheelchair and onto the bed, shimmy his pants down, roll him back into the sling, and then place him on the commode. As you may imagine this took several minutes wish was wasting precious time when you feel the urge to go. We new we needed a different solution.
We had received magazines in the mail showing pants, shirts, and jackets designed for people who need to use wheelchairs. They all had fastners on the sides but were usually velcro or snaps and ran between $40 – $60 per pair. Bobby did not want to go this route for two reasons;
- He had just bought a bunch of L.L.Bean flannel and fleece lined jeans to help him keep warm this past winter and did not want to give them up.
- He was concerned with the timing it would take to get the pants on with velcro and snaps, the elements (would wind be able to get into the pants via snaps), and the wear and tear on the velcro.
For those reasons we sought another solution. We brought his pants to our local tailor and asked if she would be able to put zippers along the outside seams. She said no problem and that she would get sleeping bad zippers to put in to help with the wear and tear. Bobby was able to keep all his own pants and shorts and it cost $30 per zipper.