For those who attended the overcoming upper body weakness challenges workshop seeking a quick refresher or those who were unable to attend but would like the benefit from viewing demonstrations

Overcoming Upper Body Weakness Challenges Workshop Companion Reference

Caregiver’s collective foundation of real, practical, “life-learned” knowledge related to Overcoming the Daily Challenges of Living with ALS.

Overcoming Challenges of ALS Publications

Wheelchair Controls (Continued)

Wheelchair Controls Scenarios / Demos (Continued)

Video: Workshop Scenario - Sip &amp; Puff

Video: Workshop Scenario - Letting The Caregiver Drive For A While

This is a traditional headdress. This is one of the sides supports  that holds somebody's head into position. 

This is basically a bendable adjustable straw type hardware for this. 

Now this type of device is probably something that's not used traditionally. 

I don't use it hardly ever with ALS patients.

The big reason is is because as you get weaker, your lung capacity is getting weaker as well.

The sip-and-puff has basically four commands a hard sip a soft sip hard puff and a soft puff.

And unfortunately when you get weaker, you don't have the ability or the equipment really doesn't have the ability to differentiate between them and the command you are giving

So you're trying a hard puff. It just thinks it's a soft puff. So instead of going forward you're driving to the right.  

To sit there and hold your breath and continue to Puff into this and be able to go straight. They would be exhausted. So they do have what we call latch commands.

 And basically what that would be is I would give it the command it would start going forward. I could let up off of it and it will continue to drive

down the street. The only thing you have to do then is give it a soft sip or hard puff or soft puff to go right or left to kind

of track but it just continues going until you give it a command to stop command to stop would be a reverse command so hard

You can have an emergency stop like I could I could have a switch right here so that if you felt like I'm in danger you just hit that really quick and then stop.

But this could definitely have you out of breath.

The last thing that we're going to do is to talk a little bit about attendant control and sometimes you know, somebody's he's particularly strong but towards the end of the day,

it's just too hard on them to move their chair around with the throttle and so you can use an attendant control to move the chair around

Try to force it in the direction where it's not wanting to go.

The other aspect of this is because it's on the back of the chair and if I want to go to the right and turn this direction, I push the joystick to the right while I'm going to the left. So that's

very confusing to someone. He's in the chair is my brain says right. I press right. It's going left. I've had numerous people called me

and said you have to come reprogram. This because its going backwards.

In fact, it's not so the tip that I have is that you can always rest one hand on the chair so that as you start to go in and starts to turn you you're kind of

following the trip. The other aspect is is you want to know where do I want? This person's needs to go. That's how you kind of decipher Direction. So if I want

to go straight wrap around this I'm going to

make sure that I'm pushing the joystick in the direction that I can.

A lot of folks will just use the joystick on the side of the chair and walk alongside the chair and just fan.

Reach out for help as Melissa mentioned earlier. The ALS Association is here to serve you the ALS Association team can help you or find people who can help you

do you buy these chairs? Do you rent them?

depending on your level of disability. We might start with the scooter. Maybe go to electric chair that you can fold up and put in your trunk right these chairs right here insurance will cover

Like one chair every so many year.  So if you have insurance pay for a cheap chair and

in a year you need the power chair, they may not pay for it.

So you want to wait until you're ready to get the power chair chair that can do all these functions that you're going to need it.

there's some features on the chair that insurance wont pay for like the riser  

Just other avenues like team Gleason that can help fund functions

that we see as essential but that insurance doesn't cover  

these chairs are multiple thousands of dollars chairs are very expensive. So you want to use your insurance far them

Im whooped you can you run the chair for me? Yeah, absolutely. Let me get the attendant control going here. I just pull it out like this

and then I'll just switch it over here to attendant control.

All right, it is always easier for me to hold on up here while I do it and away we go. I always have to go through the doorways really slow because

that's the tricky part but we've got it on really slow mode so we should be okay.

The attendant control can and should be positioned at a height that best suits the primary care giver. This controller does not take away the ability for the pALS to control the chair if they choose.  ose

Driving a power wheelchair may appear to be a simple task. In reality, it takes a lot of practice to get really proficient. 

Providing a power wheelchair or changing out primary methods of controlling a power chair without training is like putting a teenager behind a wheel without drivers training. I

t’s not a matter of if something will happen, it’s just a matter of when.  

We recommend that you leverage a place like Paraquad that has a physical track that the pALS and caregiver can practice on with different obstacles to master their power chair and related controller.

Reach out for help. As Melissa mentioned earlier, the ALS Association is here to serve you. The ALS Association team can help you or find people who can help you. 

Personal Hygiene Challenges (Continued)

Personal Hygiene Scenarios / Demos (Continued)

Video: Workshop Scenario - Not Getting Clean

Video: Workshop Scenario - I want to Wipe Myself

I don't have any trouble getting in and out of the shower anymore. But standing through shower. I can't do. I need to shower chair

and I can't reach the areas where I used to and  I'm not getting clean enough. So I have some aids here. I'm going to be using the first is a shampooing brush.

So I put the shampoo in my hair and then I massage the soap into my scalp

for those hard-to-reach places and undercarriage

I can't hold a hair dryer for very long. So I have a hair dryer on a stand.

And then long handled comb and long handled brush for my hair.

We have seen options on how to overcome bathing challenges. Let’s take a look at options with upper body weakness impacts toileting independence.

As my hands get weaker And I lose my reach. I can't reach places like I used to. This is a toileting Aid.

It's pretty simple to use you. Take your toilet paper.

Put it into the little dip there and then you can reach your undercarriage front and back when you're finished.

A quick push disconnects it in the toilet paper falls into the toilet.

There are many different types of wiping aids. Some have extension to make the reach longer if needed. Adding a universal cuff to the wipe aid can also be very helpful.

An alternative to the self-wipe aid or in conjunction with it is an electric hand-held bidet. This can be used to spray water onto the backside for a good cleaning. Some may choose to use paper to dry their bottom afterward. 

Just goes underneath turn it on and it sprays.

You don't have a electric one. This is just a pump one works the same way turn it upside down reach underneath and you spray

More permanent changes to the bathroom that many people enjoy is a bday connected to the toilet. We don't have this demonstrate today, but we will be providing you information at the end of the session where you can learn

personal hygiene can be an awkward topic but it is something that needs to be discussed as a caregiver. If you are noticing that the person with ALS personal hygiene slipping things like bad breath

body odors in frequent showers not changing your clothes. You need to raise the conversation.

These are likely signs of some level weaknesses beginning to take their toll on a person with ALS

if they are bringing it up, you need to find out where the person with ALS is having challenges and then partner with them to provide assistance or tools to enable them to independently

be more effective now. Let's move on to drinking eating challenges.

Equipment Used During the Demonstrations

Wheelchair Controls Scenarios / Demos

Video: Workshop Scenario - Throttle Options

◼ <a href="https://www.permobil.com/en-us/products/accessories/drive-controls/standard-attendant-control">Attendant Control</a> ◼ <a href="https://hub.permobil.com/blog/alternative-drive-controls-single-switch-scanning-eye-gaze">Eye Gaze Control</a> ◼ <a href="https://www.permobil.com/en-us/products/accessories/drive-controls/permobil-total-control-head-array">Head Array Controller</a> ◼ <a href="https://www.permobil.com/en-us/products?category=Accessory">Joy Stick Styles: Ball, Dome, T Handle, U-Shaped</a> ◼ <a href="https://www.permobil.com/en-ca/products/accessories/drive-controls/permobil-sip-puff-system">Sipp &amp; Puff Controller</a>

For more detailed guidance on overcoming upper body weakness challenges refer to the <a href="https://read.bookcreator.com/library/-NAfZl110dMxO3Gumsv0">Overcoming Upper Body Weakness Challenges Booklet</a><a href="https://read.bookcreator.com/library/-NAfZl110dMxO3Gumsv0/book/kFT6zZvIR7inIZmqOAjXeQ">.</a>

That throttle that he is holding on to that's what the person with ALS is going to use to control their chair. But depending on your hand weakness, you might have problems

with that style of controller and there are a lot of different options that were with us today. So don't think you're just stuck with that one controller because it might be

easier for your fingers just to like hold on to something like this, right?

And then there's this one your hand lays on it. That's a nice feature to this.

And then there's this one it's like a big old ball. I can just rest on that right on Stick.

Different options to look at but what you want to walk away with us as your hand gets weaker and it's hard 

for you to use that little throttle and navigate a chair,

there are options and talk to the person you are working with on your chair. Like Rob.

They can guide you through all different types of throttle choices you to continue using the hand controller for as long as possible

The easiest way that you'll ever drive a wheelchair  is through the joystick.  

but when you have the joystick here, sometimes it's not as easy to grab and press  

maybe you don't have grip that anymore or

losing function in your fingers. That's where some of these other options come into play. We call this a goal post where somebody's hand

can just rest in here. You use the sides of the joystick by leaning your hand to turn Instead of using fine motor movements

that you might have. But as you lose that strength you're using gross motor movement. So if I have my hand kind of place to this and using my shoulder, I can then kind of push the joystick forward

or Draw it back and I'm not really using hand and wrist strength.

So finding the appropriate joystick handle can sometimes help you navigate that and be able to use the joystick longer.  

there is some programming things that we can do in the joysticks as well. So when you're not able to push it as far we can actually shrink the

throw of the joystick so that you can only push it just a little bit and still be able to operate your joystick controls at full function.

You're asked about TV control. They actually have Bluetooth in these things now infrared in these things that you can turn on tv thru t 

can use Mouse control and operate a laptop through the joystick.

So there's lots of potential functions and things that this can do . different joystick handles can help maintain that ability to drive the easiest way

So when you leave being able to drive with a joystick and go to more of a switch control so switch controls are more on and off. So it's a lot choppier is a little bit

more robotic to be able to drive a chair and I was like, okay, I'm gonna drive forward, but I got to make a little bit of a turns or A little bit of the time start going forward and share

over corrects itself and you went too far and I are back and forth. So you kind of see me try to drive it a little bit different ways that you don't understand why it might be a little bit more difficult

that way but there are ways to keep somebody Mobile on somebody to be able to operate their seat control functions and be more independent longer.  

Personal Hygiene Challenges

Personal Hygiene Scenarios / Demos

◼ <a href="https://www.amazon.com/Loofah-Shower-Scrubber-Exfoliating-Adhesive/dp/B07RN354XJ/ref=sr_1_57_sspa?crid=217088OB08ZAE&amp;keywords=bath+towel+back+wash+band+strap&amp;qid=1665978924&amp;sprefix=bath+towel+back+wash+band+stra%2Caps%2C1065&amp;sr=8-57-spons&amp;psc=1">Back scrubber strap</a> ◼ <a href="https://www.amazon.com/Maddak-Maddawash-Medium-Terry-741320002/dp/B0007OZ2BQ/ref=asc_df_B0007OZ2BQ?tag=bingshoppinga-20&amp;linkCode=df0&amp;hvadid=80745437134298&amp;hvnetw=o&amp;hvqmt=e&amp;hvbmt=be&amp;hvdev=c&amp;hvlocint=&amp;hvlocphy=&amp;hvtargid=pla-4584345015761240&amp;psc=1">Bath mitt</a> ◼ <a href="https://www.amazon.com/s?k=360+sonic+toothbrush&amp;crid=3JZN28ENMV0F&amp;sprefix=360+Sonic+%2Caps%2C126&amp;ref=nb_sb_ss_ts-doa-p_1_10">360 Sonic</a> Tooth Brush ◼ <a href="https://www.bing.com/shop/productpage?q=Bluereo+G100+Electric+Suction+Toothbrush+With+Built+In+Water+Suction+And+Sonic+Vibration+(EU+Version)&amp;filters=scenario%3a%2217%22+gType%3a%2212%22+gId%3a%22160599135699%22+gGlobalOfferIds%3a%22160599135699%22+NonSponsoredOffer%3a%22True%22&amp;productpage=true&amp;pdppageoverlay=true&amp;bgscenario=l2&amp;originQuery=Oral+Clean+electric+suction+tooth+brush&amp;overlayOfferIds=160599135699%2c154397772635%2c41687239478%2c119517007140%2c124415693269%2c163802218315%2c137088939405&amp;overlayId=160599135699&amp;FORM=SSAPC1">Oral Clean electric suction tooth brush</a> ◼ <a href="https://www.vitalitymedical.com/treated-suction-toothbrush-kits.html?feed_special=bing&amp;utm_source=bing&amp;utm_medium=cpc&amp;utm_campaign=**LP%20-%20Shop%20-%20%27Personal%20Care%27%20-%20(%2450%2B)%20-%20General&amp;utm_term=4582214718068832&amp;utm_content=MDLMDS096575_cs%20%7C%20Treated%20Suction%20Toothbrush%20Kits%20Individually%20Wrapped%20MDS096575%20%7C%20%24107.25">Medline </a>Suction Tooth Brush ◼ <a href="https://www.amazon.com/Tubing-Utensils-Handles-Assortment-Pencil/dp/B085DFZBZS/ref=sr_1_3?crid=3437MZPQJMPYH&amp;keywords=foam+grip+for+toothbrush&amp;qid=1656429796&amp;sprefix=foam+grip+for+toothbrush+%2Caps%2C100&amp;sr=8-3">Foam grip tubing</a> or <a href="https://www.amazon.com/EazyHold-Silicone-Universal-Assistive-Arthritis/dp/B09TS37342/ref=sr_1_1_sspa?crid=2792G4RV1LWM2&amp;keywords=universal+cuff+adaptive+utensil+holder&amp;qid=1656429758&amp;sprefix=universal+cuff%2Caps%2C228&amp;sr=8-1-spons&amp;psc=1&amp;spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUEyT0JVQlc2UkJMQ0lXJmVuY3J5cHRlZElkPUEwMTEyNjAzMUtHNDJWMEJVQzA1NyZlbmNyeXB0ZWRBZElkPUEwNDc3NTc1MUlJUzNZVTZYS1BWSCZ3aWRnZXROYW1lPXNwX2F0ZiZhY3Rpb249Y2xpY2tSZWRpcmVjdCZkb05vdExvZ0NsaWNrPXRydWU=">universal cuff</a> ◼ A <a href="https://www.amazon.com/Etac-8021-0078-Beauty-Washer/dp/B000M27I6U">long handled hair washer</a> ◼ A<a href="https://www.amazon.com/Rehabilitation-Advantage-Handle-Sponge-Yellow/dp/B01DGPOL8C/ref=sr_1_4?crid=VFZ7ONBU0GMW&amp;keywords=long+handle+bath+sponge&amp;qid=1656431503&amp;rdc=1&amp;s=home-garden&amp;sprefix=long+handle+bath+sponge%2Cgarden%2C126&amp;sr=1-4"> long handled bath sponge</a> or <a href="https://www.amazon.com/Exfoliating-Shower-Brushing-Moderate-Bristles/dp/B09XQWN2FF/ref=sr_1_3_sspa?crid=VFZ7ONBU0GMW&amp;keywords=long+handle+bath+sponge&amp;qid=1656431589&amp;s=home-garden&amp;sprefix=long+handle+bath+sponge%2Cgarden%2C126&amp;sr=1-3-spons&amp;psc=1&amp;spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUExSUgzWDRHOEoxTlJZJmVuY3J5cHRlZElkPUEwNzc4NzUzMU5DUVpYVUhBSkZHSiZlbmNyeXB0ZWRBZElkPUEwNjQzNTQ5MURXTkk3R1NDUlNSWCZ3aWRnZXROYW1lPXNwX2F0ZiZhY3Rpb249Y2xpY2tSZWRpcmVjdCZkb05vdExvZ0NsaWNrPXRydWU=">shower brush</a> ◼ Automatic <a href="https://www.amazon.com/Secura-Touchless-Automatic-Adjustable-Dispensing/dp/B078XDFDPY/ref=sr_1_4?crid=25TMXHLU5VPE4&amp;keywords=automatic+soap+dispenser+for+kitchen+sink&amp;qid=1656430436&amp;s=home-garden&amp;sprefix=automatic+soap+dispenser+for%2Cgarden%2C127&amp;sr=1-4">soap dispenser</a> and <a href="https://www.amazon.com/Royal-Sovereign-Personal-Automatic-RTHD-790S/dp/B07BGH72JV/ref=sr_1_15?crid=3HPRI58NZ2X4A&amp;keywords=hands+free+hand+dryer&amp;qid=1656430087&amp;sprefix=hands+free+hand+dryer%2Caps%2C680&amp;sr=8-15">hand dryer</a> ◼ A <a href="https://www.amazon.com/Handled-Applicable-hand-disabled-inconvenient-activities/dp/B07CZK83TZ/ref=sr_1_5?crid=EX5JB5FMLXTG&amp;keywords=long+handled+brush+for+hair&amp;qid=1656429930&amp;sprefix=long+handled+brush+for+hair%2Caps%2C128&amp;sr=8-5">long handled brush and comb</a> ◼ <a href="https://www.amazon.com/Bottom-Handle-Comfort-Holder-Toilet/dp/B07VPTJ1WX/ref=sr_1_4?crid=3B6RLM9XFJJ1M&amp;keywords=long+handle+self+wipe+tool&amp;qid=1656431790&amp;s=home-garden&amp;sprefix=long+handle+self+wipe+tool%2Cgarden%2C111&amp;sr=1-4">Self-wipe bathroom aid </a> &amp; <a href="https://www.amazon.com/Mighty-Rock-Postpartum-Hemmoroid-Treatment/dp/B0881LFY6G/ref=sr_1_1_sspa?crid=2T64QD4G7XGLY&amp;keywords=electric+handheld+bidet+portable&amp;qid=1660967054&amp;sprefix=electric+hand+held+bidet%2Caps%2C762&amp;sr=8-1-spons&amp;psc=1&amp;smid=A1WRPF5LJ6QXCQ">Electric hand-held bidet</a> ◼<a href="https://www.amazon.com/Suction-Bathroom-Holder-Shower-Window/dp/B08TQF4WPR/ref=sr_1_57?crid=SVXE6ZRYGGG4&amp;keywords=large%2Bsuction%2Bcup%2Bhooks%2Bheavy%2Bduty%2Bfor%2Bshower&amp;qid=1666466250&amp;qu=eyJxc2MiOiIxLjUzIiwicXNhIjoiMS4zOSIsInFzcCI6IjEuMzcifQ%3D%3D&amp;sprefix=large%2Bsuction%2Bcup%2Bshower%2Bhooks%2Caps%2C156&amp;sr=8-57&amp;th=1">Shower suction cup hooks</a>

Video: Workshop Scenario - I Just Want to Brush My Teeth

For more detailed guidance on overcoming upper body weakness challenges refer to the <a href="https://read.bookcreator.com/library/-NAfZl110dMxO3Gumsv0">Overcoming Upper Body Weakenss Challenges Booklet</a><a href="https://read.bookcreator.com/library/-NAfZl110dMxO3Gumsv0/book/kFT6zZvIR7inIZmqOAjXeQ">.</a>

Most pALS start with a manual toothbrush over time they cant hang on to it. Then they may move to using an electric toothbrush, but their arms get tired and they cant hold it up

 You turn it on and it brushes all of your teeth at once. It has got different powers 

We put this in your mouth and it will brush all your teeth. I'll put just a little toothpaste on it.  

Before brushing teeth, apply a clothing cover so toothpaste doesnt get on the pALS shirt 

I have a rinse cup with water and a straw and a spit cup. When you feel like tere's too much fluid in your mouth, use the spit cup

We're going to keep you leaning forward a little bit.

I just want you to make me aware when you need to spit and if you want to rinse  

Okay, you want to spit all right. There you go.

Good job, and this has a timer and it'll tell us  It's time to pull out. It'll automatically shut off that will help remind us as well.  

You can brush all teeth at the same time  

While PALS disabilities can make oral care challenging, good oral care is really important because bacteria can go from the mouth into the lungs causing respiratory infections. 

At some point the pALS will find it very difficult if not impossible to independently lift their hands up to their mouth to hold a toothbrush and will require a caregiver to assist. Let’s take a look at that situation.

I know it's getting harder for you whenever I'm brushing your teeth because there's fluid and your starting to choke more 

This electric toothbrush also has a suction. So I press on and I press it again and it suctions. Do you hear it suction?

and then I press again and it brushes so I can literally suck and brush at the same time.  

All the fluid that we suck out just goes into this bag.  

The other option because We  have that suction machine for whenever you get a lot of fluid buildup in your mouth. I

This toothbrush attaches to the suction machine tubing. I can brush manually and then I just press my finger over the hole and it's suctions  

I can brush and suction at the same time. So I think that these are also two good options that we might want to move to 

now that you're starting to gag and choke a little bit more when I'm trying to brush your teeth

Good personal hygiene is critical for both physical and emotional well-being. It contributes to a healthy and positive self-esteem. We just looked at overcoming oral care challenges.

 Let’s take a look at bathing challenges. 

Neck &amp; Hand Weakness Scenarios / Demos

Video: Workshop Scenario - I Can't Keep My Head Lifted

◼ <a href="https://www.amazon.com/Physical-Therapy-Aids-081281740-Sammons/dp/B07BZ34ZP4/ref=sr_1_8?crid=1AON9WIBQNRJU&amp;keywords=edema+gloves+for+swelling&amp;qid=1656428886&amp;sprefix=edema+glove%2Caps%2C108&amp;sr=8-8">Edema glove</a> ◼ <a href="https://www.graylinemedical.com/products/rolyan-aquaplast-resting-pan-mitt-splint?variant=19504427171897&amp;msclkid=f2e206b8af50152e6a1f64d6a1054bd4">Rolyan resting split</a>, <a href="https://www.amazon.com/REAQER-WristThumb-Immobilizer-Tendinitis-Dislocation/dp/B07K8MNPV4/ref=sr_1_1_sspa?dchild=1&amp;keywords=resting+hand+splint&amp;qid=1595619384&amp;sr=8-1-spons&amp;psc=1&amp;spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUEySVlCMUlTRElUWlRCJmVuY3J5cHRlZElkPUEwODYwNDU1MkI5R1MzTEpUT0pIRiZlbmNyeXB0ZWRBZElkPUEwMDQ3OTIxMzk1NlMyTUNDV1JUSSZ3aWRnZXROYW1lPXNwX2F0ZiZhY3Rpb249Y2xpY2tSZWRpcmVjdCZkb05vdExvZ0NsaWNrPXRydWU=">Reaqer</a>, <a href="https://www.bing.com/search?q=saebostretch&amp;cvid=dc894719100a427dad038a2fe462dc3a&amp;aqs=edge..69i57j0l8.1111j0j4&amp;FORM=ANAB01&amp;PC=U531">Saebostretch </a> ◼ <a href="https://www.amazon.com/Aspen-Cervical-Collar-Adult-Regular/dp/B00E0MIGZ0/ref=sr_1_1_sspa?keywords=aspen+collar&amp;qid=1657724108&amp;sr=8-1-spons&amp;psc=1&amp;spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUEzTkdMUURNTFY0UEpEJmVuY3J5cHRlZElkPUEwNTM0MDk0TjJMMFpaVFBYRkFQJmVuY3J5cHRlZEFkSWQ9QTAxMTQ5MjkzSFA5UTVIMFFNWExTJndpZGdldE5hbWU9c3BfYXRmJmFjdGlvbj1jbGlja1JlZGlyZWN0JmRvTm90TG9nQ2xpY2s9dHJ1ZQ==">Aspen collar</a>, <a href="https://www.amazon.com/revolutionary-cervical-provides-breathable-lightweight/dp/B01BH7GO2C/ref=sr_1_1_sspa?crid=10K4PNTEQZ91J&amp;keywords=back+neck+brace&amp;qid=1657723570&amp;sprefix=back+neck+brace%2Caps%2C499&amp;sr=8-1-spons&amp;psc=1&amp;spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUE0TFRYTU5aQ0IzV0cmZW5jcnlwdGVkSWQ9QTA2MjQyNjEyS0pUUlpWRDRTRVY4JmVuY3J5cHRlZEFkSWQ9QTAxNzExMDFWRk9DSFlYSE0zWDYmd2lkZ2V0TmFtZT1zcF9hdGYmYWN0aW9uPWNsaWNrUmVkaXJlY3QmZG9Ob3RMb2dDbGljaz10cnVl">BAC neck brace</a>, ◼ <a href="https://www.amazon.com/Headmaster-081015155-Collar-Medium-Shape/dp/B07BKLMJ82/ref=sr_1_2?crid=1FNXVTMZ18PCD&amp;keywords=headmaster+collar&amp;qid=1651379578&amp;sprefix=headmaster+collar%2Caps%2C115&amp;sr=8-2">Headmaster collar</a>, <a href="https://www.amazon.com/OTC-Cervical-Collar-Support-Medium/dp/B000JNRLCI/ref=sr_1_5?crid=1XDWJC21S6KYX&amp;keywords=soft+neck+brace&amp;qid=1657724407&amp;sprefix=soft+neck+bar%2Caps%2C256&amp;sr=8-5">soft foam neck brace</a> ◼ <a href="https://www.amazon.com/Physical-Therapy-Aids-081444785-Headrest/dp/B07BSSFSYK/ref=sr_1_1?keywords=Savant+Head+Rest&amp;qid=1651379611&amp;sr=8-1">Savant Head Rest</a> ◼ <a href="https://mckiesplints.com/">Thumb splint</a> ◼ <a href="https://www.amazon.com/RCAI-Tendinitis-Lightweight-Adjustable-Moisture-wicking/dp/B00NVQ7POE/ref=sr_1_2?crid=3736XFOTRTVO6&amp;keywords=RCAI+dorsal+carpal+tunnel+splint&amp;qid=1657730650&amp;sprefix=rcai+dorsal+carpal+tunnel+splint%2Caps%2C648&amp;sr=8-2">Dorsal wrist split</a> ◼ <a href="https://buildmywheelchair.com/parts-accessories/power-wheelchair-parts-accessories/permobil-parts-accessories/permobil-upper-extremity-supports/">Power Chair Arm Pads</a> ◼ <a href="https://buildmywheelchair.com/permobil-headrests/">Power Chair Head Mounts</a> ◼ <a href="https://www.amazon.com/Memory-Travel-Pillow-Lumbar-Support/dp/B01IEJHJWK/ref=sr_1_6?crid=2QKX9SOELRLRG&amp;keywords=Twist+Bendable+Neck+Support+Pillow&amp;qid=1651379637&amp;sprefix=twist+bendable+neck+support+pillow%2Caps%2C538&amp;sr=8-6">Twist Bendable or Travel Neck Pillow</a> ◼ <a href="https://www.amazon.com/PUREWAVETM-Patented-Percussion-Vibration-Attachments/dp/B08GBCDQH1/ref=sr_1_1_sspa?keywords=purewave+pada+cordless+handheld+massage&amp;qid=1651379681&amp;sr=8-1-spons&amp;psc=1&amp;smid=AUKHDSQ90C9Q3&amp;spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUExVEZQNDA3OUwzREtOJmVuY3J5cHRlZElkPUEwNTgzNjI3M1UyS1BYTEgySjJRJmVuY3J5cHRlZEFkSWQ9QTA5MDQzOTgxNlhRWkZONUpGVUMzJndpZGdldE5hbWU9c3BfYXRmJmFjdGlvbj1jbGlja1JlZGlyZWN0JmRvTm90TG9nQ2xpY2s9dHJ1ZQ==">Purewave pada cordless handheld massage</a> ◼ <a href="https://www.amazon.com/REVIX-Microwavable-Shoulders-Weighted-Microwave/dp/B08612XN46/ref=sr_1_6?crid=2JO881MF2TWL6&amp;keywords=microwavable+moist+heat+back+and+neck+wraps&amp;qid=1673155106&amp;sprefix=microwavable+most+heat+back+and+neck+wraps%2Caps%2C107&amp;sr=8-6">Moist Heat wraps, microwavable neck wraps</a> ◼ <a href="https://www.amazon.com/ZXU-Shoulder-Soothing-Tension-Therapy/dp/B07WWL22GR/ref=sr_1_1_sspa?crid=22V0T3UWXRDIG&amp;keywords=back+and+neck+heating+pads&amp;qid=1673155165&amp;sprefix=back+and+neck+heating+pads%2Caps%2C107&amp;sr=8-1-spons&amp;psc=1&amp;spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUExREgxV0NGVzM5UjlZJmVuY3J5cHRlZElkPUEwNTU4NzgzMjJVVzlJVkQ3VUFWNyZlbmNyeXB0ZWRBZElkPUEwMDA1ODg3V0pPNEJCS0ZGSE9EJndpZGdldE5hbWU9c3BfYXRmJmFjdGlvbj1jbGlja1JlZGlyZWN0JmRvTm90TG9nQ2xpY2s9dHJ1ZQ==">Shoulder &amp; Neck heating pads </a>

I have this travel pillow. Let's just try this for now. We gotta get your head up off your chest. That's gotta be hard breathing like that 

I have to find something else out. Let me get the massager for your neck

The pain it's down my shoulders and my back. Im  gonna try to do a little massaging with this hand held massager

hold my head up. I can't really hold my head up.  

So we massaged this for a while, but I think I'm going to keep some heat on it because those muscles are so tight. Let me put a wrap on it. Okay. 

When the neck muscles weaken, the person with ALS can experience an involuntary head drop or their chin resting on their chest. This can result in a stiff painful neck.

You saw the caregiver grab a massager to provide some neck pain relief. Moist Heat wraps, microwavable neck wraps, or heating pads are helpful in providing relief.

 Be careful with heat packs so you don’t to “burn” the skin. It is best to place a cloth between the heat pack and the skin.   

The pALS mentioned difficulty breathing while their head was in this position. It can also be difficult eating. So you can see how important it is to address neck weakness quickly. 

Now let’s see the impact a neck brace can have. 

Video: Workshop Scenario - Neck Support Alternatives

For more detailed guidance on overcoming upper body challenges refer to the <a href="https://read.bookcreator.com/library/-NAfZl110dMxO3Gumsv0">Overcoming Upper Body Challenges Booklet</a><a href="https://read.bookcreator.com/library/-NAfZl110dMxO3Gumsv0/book/kFT6zZvIR7inIZmqOAjXeQ">.</a>

Your head is just messed up again, isn't it? Yeah, I need to just I need my pillow. I can't breathe very well. I've got something better Brad. I got this at the store today. It's called a soft collar.  

You can wear it all of the time time when you're feeling bad. All right.. I know it's gonna be a little different  it's kind of like the travel pillow but it is not as bulky and it can stay on all the time.

What do you think of that? Yeah. That's okay. Well, we're going to call physical therapy and we're going to have them help us find the right collar for you

There are many neck brace options that a physical therapist may recommend. This includes a head master collar. This is an example of a breathable collar that still gives the pALS some movement

Try this one Brad. I think I might be a little less hot and a little more comfortable that physical therapist told us about. It is called a Headmaster and 

I can squish this down and position that wherever its most comfortable. What do you think of that one? It holds my chin up. You don't have to fight so hard to keep that chin up. Yeah. Is it easier for you to breathe that way? Yeah.

There are also BAC neck braces or Aspen collars. Many people keep an older collar for use in the shower. 

Additionally, the chin pads on these collars tend to get dirty or the pads wear down. Over time you will need to get replacement chin pads or make your own chin pad covers

Brad. This one is a little different. This is called a BAC like the back of your shirt

BAC collar. That's a little different. It's not as positional. Like the other one was it kind of is just a molded plastic there, but that's

one for you to consider. What do you think about that one? Yeah. Like the other one better.

This is called an aspen collar. This probably will give you the most amount of support 

let's try this one. It's called an aspen collar probably seeing people that have had neck injuries kind of wear something like this before.

How do you like that? i  really can't move in that one  .

Yeah, it's better better. Can you look to the right and left?

Okay. Well, then it's got his good points and it's bad points. Uh, yeah, I can't turn my head can't turn your head, but you don't have to worry about your head knocking on your shoulder anymore, right?

While the neck brace definitely helps keep the chin off of the chest, the pALS may still experience the head leaning to one side with their ear toward their shoulder.

 Adding a head rest to a power chair can help keep the head properly aligned. 

This is one of the most comfortable head collars, but when it comes to insurance, it's very expensive and I was able to find them on eBay with a medical supply store for I think about $35 a piece

which is the others work 270 out of pocket.  

i wouldnt just go purchase a collar. As you saw there are may different styles of collars. Try them on, one may be more comfortable or more effective than another

if you have an option try to borrow one from ALS loan closet

You get one shot for a collar with insurance Insurance wont pay for a 2nd collar. 

Try to borrow one before you just go purchase one with your insurance and like Brad said, check the loan closet or ibuy them used online 

Phone &amp; Computer Scenarios / Demos

Video: Workshop Scenario - I Can't Get A Grip

◼ <a href="https://enablingdevices.com/product-category/switches/">Adaptive Switches</a> ◼ Android Mobile Phone ◼ IPhone Mobile Phone ◼ A lanyard / neck strap (e.g. <a href="https://www.publiclands.com/p/nite-ize-hitch-phone-anchor-and-lanyard-21nizuhtchphnnchrcac/21nizuhtchphnnchrcac?sku=21789381&amp;camp=CSE:PBL_92700070579285762_PLA_pla-4582558339344867&amp;gclid=9e44601751361e900e9e02794218d641&amp;gclsrc=3p.ds&amp;msclkid=9e44601751361e900e9e02794218d641">Hitch</a>, <a href="https://www.amazon.com/SS-Adjustable-Detachable-Compatible-Smartphones-Black/dp/B07ZNX61ZB/ref=sr_1_1?crid=1Q7SYUIWVT2MS&amp;keywords=SS+Phone+lanyard&amp;qid=1651381088&amp;sprefix=ss+phone+lanyard%2Caps%2C209&amp;sr=8-1">SS Phone lanyard</a>) ◼ <a href="https://www.amazon.com/Olafus-Bluetooth-Detachable-Waterproof-Shockproof/dp/B07MW1Q984/ref=sxts_rp_s_a1_0?cv_ct_cx=olafus+bluetooth&amp;keywords=olafus+bluetooth&amp;pd_rd_i=B07MW1Q984&amp;pd_rd_r=372aa0ea-587f-45cb-a13a-370ed73c7331&amp;pd_rd_w=oq6xX&amp;pd_rd_wg=FTS9K&amp;pf_rd_p=4bf4bfb7-01d6-422f-8e64-ff8707d77d6c&amp;pf_rd_r=SGAKDP182HVWSSG7Q1T4&amp;psc=1&amp;qid=1651381132&amp;sr=1-1-5985efba-8948-4f09-9122-d605505c9d1e">Olafus</a> Speaker ◼ <a href="https://www.tobiidynavox.com/">Tobii Dynavox</a>

Additional Equipment That Would be Helpful (But Not Included In The Demonstration)

◼ <a href="https://gettecla.com/pages/all-products">Tecla-e</a>

I'm really getting frustrated trying to use my phone. I can't hit the keys when I try to call people and call the wrong people and it's just gotten to be a real pain.

So Brad, I know that you've also had problems. You said whenever you were out losing grip on your on your iPhone. Yesterday you

took a tumble and your phone went flying  and you couldn't call me remember? You were stuck at home without phone to call somebody and that was tough . 

So I'm going to try to get like an iwatch but until we can get that I think this will be handy. it's a lanyard and I just hooked it to your phone and over your head

You don't have to constantly carry your phone and you don't have to worry about if you fall the phone flying away

If you like it we can put a lanyard on the TV remote control and all sorts of other good stuff, right? 

Connectivity is extremely important for people with disability. Mobile Phones are essential for both safety and getting help when it is needed.

In addition to neck lanyards, an Apple watch is very handy and always connected to the pALS wrist. There is also an inexpensive arm band that can be leveraged

Connectivity It is also key to retaining an active social life and where disability can become “invisible” enabling the pALS to be treated like everyone else. Through their mobile phone, the pALS retains their connection to the outside world. 

As ALS progresses, the fine motor skills needed to press buttons and swipe an iPhone screen can be problematic. 

 Let’s see what happens when the pALS starts having difficulty with fine motor movements needed to use their phone

Independent Dressing Scenarios / Demos (Continued)

Video: Scenario - I Want To Dress Myself (Sock Aid &amp; Miracle Dressing Aid Tool)

◼ <a href="https://www.goodhousekeeping.com/clothing/g35408937/adaptive-clothing/">Adaptive Clothing</a> ◼ Adaptive Jewelry ◼ <a href="https://www.amazon.com/dp/B00WRG9LRI/ref=redir_mobile_desktop?_encoding=UTF8&amp;aaxitk=e54289c2e679b68b396c0bd576af122e&amp;content-id=amzn1.sym.53aae2ac-0129-49a5-9c09-6530a9e11786%3Aamzn1.sym.53aae2ac-0129-49a5-9c09-6530a9e11786&amp;hsa_cr_id=7907928370301&amp;pd_rd_plhdr=t&amp;pd_rd_r=e00bff27-73fb-4f39-bcb3-19d744bb486a&amp;pd_rd_w=pSWmF&amp;pd_rd_wg=6csqh&amp;qid=1656429322&amp;ref_=sbx_be_s_sparkle_lsi4d_asin_1_img&amp;sr=1-2-a094db1c-5033-42c6-82a2-587d01f975e8">Button hook / zipper pull assist tool</a> ◼ <a href="https://www.amazon.com/Fanwer-Clip-Pull-Dressing-Aid/dp/B09B3KVTYM/ref=sr_1_4?crid=2IY5YQ0NQZOAO&amp;keywords=clip+and+pull+dressing+aid&amp;qid=1656734773&amp;s=hpc&amp;sprefix=clip+and+pull+dressing+aid%2Chpc%2C222&amp;sr=1-4">Clip and pull dressing aids</a> ◼ <a href="https://miracledressingaid.com/">Miracle dressing aid</a> ◼ <a href="https://www.amazon.com/Dressing-Remover-Independent-Living-Shirts/dp/B098LFSVWJ/ref=sr_1_7?crid=2AN4QAKHMYBYE&amp;keywords=dressing+stick+dressing+aid&amp;qid=1656734987&amp;s=hpc&amp;sprefix=dressing+stick+dressing+aid%2Chpc%2C132&amp;sr=1-7">Dressing sticks</a> ◼ <a href="https://www.amazon.com/Vive-Long-Handled-Shoe-Horn/dp/B07N14ZBWC/ref=sr_1_5?keywords=EXTRA+LONG+SHOE+HORNS&amp;qid=1673155789&amp;sr=8-5">Shoe Horns</a> ◼ <a href="https://www.amazon.com/Mars-Wellness-Deluxe-Molded-Donner/dp/B0845ZL1HG/ref=sr_1_2_sspa?crid=17OBZ4UHDS18A&amp;keywords=sock+aid+device+for+seniors&amp;qid=1656429401&amp;s=hpc&amp;sprefix=sock+aid%2Chpc%2C159&amp;sr=1-2-spons&amp;psc=1&amp;smid=A1T6JNFRXASP3G&amp;spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUEzMTZOT0tNVUNGUElUJmVuY3J5cHRlZElkPUEwMTQ3MzIyQkRZOUZHREw1NDZMJmVuY3J5cHRlZEFkSWQ9QTAyNTYyNzAyQ1FTVFc1UUI5VUxSJndpZGdldE5hbWU9c3BfYXRmJmFjdGlvbj1jbGlja1JlZGlyZWN0JmRvTm90TG9nQ2xpY2s9dHJ1ZQ==">Sock aids</a>

Video: Scenario - I Want To Dress Myself (Using EZ Dresser Tool)

For more detailed guidance on overcoming upper body weakness challenges refer to the<a href="https://read.bookcreator.com/library/-NAfZl110dMxO3Gumsv0"> </a> <a href="https://read.bookcreator.com/library/-NAfZl110dMxO3Gumsv0">Overcoming Upper Body Weakness Challenges Booklet</a><a href="https://read.bookcreator.com/library/-NAfZl110dMxO3Gumsv0/book/kFT6zZvIR7inIZmqOAjXeQ">.</a>

I know it's been a little frustrating getting dressed and you want to stay as independent as possible. The occupational therapy gave us some tools we're going to try. 

 So these are big wide calf socks. They go over casts actually and they'll be much more comfortable on your feet. This is called a sock puller upper. You just put your sock on here and then you just pull it up.

This next item is to help put your pants on.

It's called a miracle dressing aid. we take your pants and we put them over the frame holders

Then you put your Legs down into the pants being held open by the frame