Tips for People with Mobility Issues
I’m a 47 year old mom with two teens who was diagnosed in September 2017 with ALS. It started 18 months ago with drop foot, and now I can’t even stand or talk properly. Things have moved quickly.
Over the last year, we have Macgyver’d a number of things that have helped with my mobility and I wanted to share them in case they are helpful for any of you.
Things to do as soon as you get your diagnosis of ALS
Bank your voice while it is clear
There are two ways to make sure you can speak in your own voice once you lose it and have to use the eye gaze speaking machine, one is to use Modeltalker.org and bank your voice fully. You have to record 1600 phrases which is a lot but then it recreates your voice completely on the eye gaze thing. Unfortunately I waited too long to start working on that so it couldn’t accept my recordings because they were not clear enough. So instead of voice banking, I did message banking where I just used the window recorder and tried to think of everything I would want to say in the future. So once I get the eye tracking thing, some phrases will be in my voice and some will not.oh well...
Videos and notes
Given the prognosis for most ALS patients, it is good to think of messages that you’d like to leave to your family especially if you have children. I have done a series of videos for my kids for all the different life events, just in case I am not there.
I thought it would be a nice idea if my kids, and my future grandkids could have a quilt to cuddle under of me, so I have some friends that are quilting (I used to quilt but no longer). They are using the clothes that I used to wear but no longer do, and the clothes that they remember me being in all the time. Some of the quilt squares will have photos and some will have messages from me, written to them.
Tips for helping when you start to have mobility issues
When I could still transfer to the toilet, these handles were incredibly helpful. You can even take them if you are going to travel anywhere so that you can safely transfer to the toilet. Link: http://a.co/dyxjd1x
If you’re still able to take a bath yourself or transfer into the shower, using a shower seat can be super helpful.
Drive Medical Folding Universal Sliding Transfer Bench https://www.amazon.com/dp/B004GYOKBG/ref=cm_sw_r_cp_tai_lsSWAbQ9E3DA1
Stand up recliner
IF you are able to transfer to a chair but you need some help to actually stand all the way up safely, these stand up recliner chairs are so stinkin’ helpful! Link: http://a.co/i5OVtPT
If you are still able to stand but it’s difficult to pivot, this spin board is so helpful.
Tips for when you are in bed most of the time
Make it easier to get dressed
Now that I am in bed almost 24/7, we figured out that the T-shirts I’m wearing could be cut up the back. It makes it so much easier to change them, and if you tuck them behind your shoulders, no one will know. But the best part is that when I am rolled on my side, it is super easy to get my daily back scratches (see below for more on that).
Support different body parts
Sometimes you need your head or arms propped up. We bought four of these and they have helped tremendously.
Cloudz Microbead Travel Neck Pillow - Blue https://www.amazon.com/dp/B00B2KV5D8/ref=cm_sw_r_cp_tai_i_nNJaBbF755JFA
While this is happening to you (and let’s be clear...it sucks), it helps to find things to distract yourself. I have an iPad with the lap tray below. In addition to being able to play games and watch shows, if you have an iPhone, you can send and receive calls as well as other things.
Tablet - iPad - Computer Table & Laptop in Bed & Couch/Sofa Tray By Desk https://www.amazon.com/dp/B01CEDE0KQ/ref=cm_sw_r_cp_tai_i_XLJaBbBQBAB0P
Make drinking easier
When you start to lose your ability to hold a cup and also when drinking from a straw is too hard because of the air that comes in with each sip, these things can help tremendously.
Sammons Preston One-Way Straws https://www.amazon.com/dp/B00CXP7F9E/ref=cm_sw_r_cp_tai_i_fKJaBbKMCV4KC
Alimed Bedside Beverage Holder https://www.amazon.com/dp/B00FEB8FOI/ref=cm_sw_r_cp_tai_i_6FJaBbBG0DD5K
Making it easier to move you while you are in bed
When you are no longer able to adjust your own position in bed and your caregiver can’t do it completely on their own, we figured out a way to make it easier. You buy several of these waterproof pads that have a slippery back and four of these fitted sheet holders. Then on top of the fitted sheet, put a pad with the blue side up and hook it to the bed with the fasteners. Then just lay another pad on top the right way and then when you are in bed and need to be turned or pushed up, it is sooo much easier.
4 pcs/set Triangle Bed Mattress Sheet Clips Grippers Straps Suspender Fasteners Holder https://www.amazon.com/dp/B01MTJSR4M/ref=cm_sw_r_cp_tai_laSWAbXF87QEK
KANECH Washable Incontinence Pads -34"x 52"-https://www.amazon.com/dp/B076WQB2BT/ref=cm_sw_r_cp_tai_9mSWAbKH0DSAJ
Easy to Wear Bra
For ladies with mobility issues, sometimes you want to wear a bra but it’s hard to put them on and off. We discovered the stick on bras, you can find them on Amazon. They really work, I was blown away!
Bed air mattress / Sleep number bed
If you have to spend a lot of time in bed, it’s great to get a hospital bed or a sleep number bed. You need to prevent pressure sores if you’re in bed a lot. We found this air mattress on Amazon that has helped so much. I can be in bed for days and not feel any pressure.
Drive Medical Med Aire Alternating Pressure Pump and Pad System, Variable Pressure, 78" x 36" https://www.amazon.com/dp/B002VWK1B8/ref=cm_sw_r_cp_tai_KTLWAb38X8R09
Pictures on your walls
It has helped me tremendously to count my blessings everyday, because I have pictures that I printed at the local Walgreens. Some are really large poster sizes, and I have them all over the wall in my room so that I can see the smiles of my friends and family at all times, and feel the love.
Back when I could shower, I bought myself this hair shampoo tool on Amazon and now that I’m either in the wheelchair or the bed full time, and my back gets super itchy all day. I’ve learned to wear cotton more than polyester which is better. That head scratcher really helped me out for my caregiver to scratch my back, it feels so amazing! http://a.co/jiWwCgV
If you spend a lot of time in bed and have a hard time adjusting yourself, this trapeze bar, hung over your bed can be very helpful for even small adjustments. http://a.co/9iiB7px
When I lost my ability to stand and walk, I had to rely on others for lots of things I thought I never would. One of the things that has helped me so much, is having cut my long thick hair into a short hairstyle, and I mean it does look like an 80’s haircut, but I’m okay with that.
Tips addressing other ALS symptoms
Solving the stinging eye issue:
I discovered that having a stinging sensation in your eyes is part of ALS because the moisture in your eyes changes so it has more CO2 or something. We found these eye drops that helped tremendously.
SYSTANE BALANCE Lubricant Eye Drops, Twin Pack, 10-mL Each https://www.amazon.com/dp/B003YFSRRG/ref=cm_sw_r_cp_tai_xpSWAbE2RHW4V
Reducing the pain from muscle cramping:
When I was not doing all the range of motion stretches, my ability to move my arms became painful. It got so bad that I couldn’t be rolled onto my sides or the pain would go insane. That made changing my briefs quite challenging. There were two things that made it significantly better. One was doing the range of motion exercises every day as I mentioned before. The other thing that helped tremendously was going to a pain doctor and getting Lidocaine shots. It made my life so much better.
Dealing with dry mouth from the bi-pap machine
When your breathing starts to get more shallow, they will probably give you a bi-pap machine to wear at night. Since I cannot sleep on my side, I sleep on my back with my head and my knees up a bit. When you sleep on your back, you have no choice but to sleep with your mouth open and that makes you have dry mouth. The machine makes the dry mouth worse. We have found a few things that help.
A chinstrap: Anti Snoring CPAP Chin Strap https://www.amazon.com/dp/B078GQ948T/ref=cm_sw_r_cp_tai_c8RWAbNPQZ3ND
A set of gel tabs: XyliMelts for Dry Mouth, https://www.amazon.com/dp/B001A42R1A/ref=cm_sw_r_cp_tai_tcSWAbEW8EN0E
A mouth protector: Stop Grinding Mouth Guard https://www.amazon.com/dp/B00D3LKWNI/ref=cm_sw_r_cp_tai_vbSWAbE812MCF
Maintaining range of motion
When I was diagnosed with als, the PT and OT both told me to do daily range of motion exercises. I did not do them as much as I should have and my range of motion in my arms became very limited. Get there detailed advice and follow their recommendations to maintain your range of motion and avoid pain.
Other tips when you are dealing with hard times
Lotsa helping hands
If you have folks that want to help you and they don’t know what to do, you can set up a webpage on the site: www.lotsahelpinghands.com and you can add tasks like grocery shopping or tasks that would be help to you and your family while you’re going through this.
Write all the life tricks you’ve learned
One of the other things I’ve done is to try and think through all the things I’ve done to get through life. We all have them, but it’s nice to leave them as a legacy. For example, these are my life tricks but try and think of yours’, so you can share them in a video or some other manner, so your legacy lives on.
Mary’s Tricks for A Great Life
- Every day try to be the best version of you that you can be that day.
- Make lists of everything you have to do and if you are dreading having to do something on the list, do it first! It will get it out of the way and make the rest of your day better.
- Sometimes when you are angry, it helps to go into a bathroom with a loud fan, close the door and just say cuss words over and over.
- To get back to sleep at night try these two tricks:
- Breathe in deep and count as high as you can and then exhale and count to the same number. Do this at least 20 times.
- Count backwards from 300 by threes. And if over time that gets too easy do 900 by nines and 700 by sevens.
- Try to stay positive and work hard. If you do, people will open doors for you that you didn’t know existed and you will have an adventurous life.
- Think of your anxiety as a little monster who shows up and lies to you. When you start to get anxious, yell back at the anxiety monster, “Shut up! You’re lying! That’s not going to happen!”
- If someone criticizes you, don’t take it personally. Just thank them for the feedback and later think about whether what they’ve said could be valuable for you.
- Marry someone with a good sense of humor who is loving.
- If something or someone makes you angry or anxious, write down a sentence that summarizes what you are feeling. And then write the same sentence again and again and again until the emotional response to the concept is lessened.
- When you are in high school or college, get a job working with the public (at Starbucks, Chipotle or as a teller at a bank for instance). You will learn all the different kinds of personalities and it will help you deal with people for the rest of your life.
- Know your angels are watching over you from above sending their love and support