AdBlock Detected

Sure, ad-blocking software does a great job at blocking ads, but it also blocks some useful and important features of our website. For the best possible site experience and to help support our community please take a moment to disable your AdBlocker.

How to best help my pALS in early stages?

Thomas933

Active member
Joined
Dec 4, 2018
Messages
76
Reason
CALS
Diagnosis
12/2018
Country
Uni
State
RI
Good evening -- I'm asking all of you to share with me some ideas, tools, methods, anything that I can do to help my pALS with regular living tasks. He works just so hard to so such simple things -- getting dressed, undressed, etc - I know you guys know.

He is in the early stages -- leg onset (walking with cane/walker). I'm looking for what helped your pALS. I want to make things easier for him.

I thought about posting on pALS board or tricks and gadgets board. I thought I would start here but if you think I should head over there, just let me know. ty.
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
1,766
Reason
PALS
Diagnosis
07/2017
Country
US
State
Oregon
Hopefully many will chime in here because there are so many ways to help, and so many things.

I’m also leg onset. Here’s what helped me:

1. With leg onset, it’s never too soon to think about your home’s accessibility, and to remodel if needed. He will likely need a wheelchair at some point. So there needs to be an accessible entrance to the main living area of the home. Sometimes that requires building a ramp. Also consider replacing carpet in the main living area and bedroom with solid flooring.

2. Doorways should be widened to 32” or more. Offset hinges are a great way to add a couple inches to a doorway. Grab bars in the shower are helpful while he can still stand and has hand function.

3. Bathroom ideally should have a roll in shower, but there have been other alternatives discussed here. A bidet toilet or bidet seat is helpful. I have a tall toilet with bidet seat and grab bars on both sides.

4. Anticipate needs and be proactive. E.g. remodeling, early use of a power wheelchair (make use of your ALS loaner closet), early use of BiPAP.

5. As far as little things, I have adaptive nail clippers but my CALS cuts my toenails. We have a dressing routine at the beginning and end of the day. I find it helpful to sit on the bed to dress as I can no longer stand safely. We had to reorganize my closet to make it easier to get to things.... a great opportunity to get rid of clothes that are no longer PALS-friendly.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,513
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
home
The first thing that might help is to sit down and determine (you may be able to do this just because you know him so well, not necessarily ask him a list of questions) what he is getting the most enjoyment from, and the biggest 'sense of himself' from.

Then what he enjoys least, and lastly what is the hardest for him to do.

It's difficult when the things he enjoys most are the hardest but I'm thinking this way - If you can prioritise what he enjoys most, and find ways to help him with what is hardest, and relieve him of what he doesn't enjoy - then he will have the bulk of his energy to put into what he enjoys.

This is different for everyone - my Chris most loved cooking and his tractor when at home.

For example with the cooking, at first he used aides, and some of these aides he made (the kitchen looked like a hardware store!). Then I started helping with the prep - getting things out of the cupboards and opening packaging etc We bought a food processor and that helped a lot too. The things we did kept him cooking to some degree for much longer. Of course he hated the clean up so was very happy to give that to me to do right from the start :lol:

When he allowed me to dress him of a morning it was astounding to find out that it took at least half of his days allotment of energy just to dress and I could save that for him. I guess on that list you can also be thinking what is a pride thing - it was really hard for Chris to allow this the first time. Once he did, he was so astounded that I could dress him within a minute or two when it had stretched to taking him 20 minutes.

Lastly, you have to be able to keep changing this as progression happens and find a way to help him cope with the losses (as you try to cope with them, it's not easy to watch nor your own losses as you can't do things you loved together).

It's kind of quite a personal thing, as some PALS are happy to stop doing something early that is really important to another. Chris's last trip around on the tractor took 2 men to lift him on and then off it. He just drove up, down and all around and the slashing pattern was quite bizarre! (slashing is the big blade you pull behind an aussie tractor to cut the grass as you go)
 

ReginaS

Forum Supporter
Active member
Joined
Nov 20, 2018
Messages
86
Reason
CALS
Diagnosis
02/2018
Country
US
State
--
For my partner first it was weakness in the right leg, but hand and bulbar weakened close to the same time. Right side first and left side then too. Increasing weakness.
Here are some of the adjustments that we did:
He used an AFO which provided some stability.
We moved into a 1 level home. (There is a basement but only I or guests go downstairs now.) At first he considered building an addition w. accessible bed and bathrooms but then dropped that plan as his ALS is progressing too fast and he would have little time to get use out of it.
He put night lights in all the bathrooms and hallways/rooms for safety where he needed it.
Once he was ready he had ramps installed.
Plastic cups w. handles. (Straws don't work for him.) Plastic utensils as they are lighter.

A walker w. a surface for his coffee cup and tablet was very helpful.
We had different kinds of walkers during different phases. He put one the other way round behind the toilet so he has something to hold on to. Seems to work better than the supports of the elevated toilet seat.
We changed a couple of the door knobs so that pALS could open them more easily. We lock/unlock front door w. our phones.
We used a long shoe horn and very stretchy socks.
We already had some grab bars and have a couple more now. PALS will say where he needs more support and friend comes over to install it.
Recently we switched to a shower transfer system.
When the wheelchair came we had the door to the bathroom widened and installed a 'barn door' as a wider door is too wide for the hallway. We also had the vanity taken out to make room for wheelchair turns. It would be great to have a roll-in shower but as ALS is going so fast the cost was too great.

We are super lucky as a friend of ours is a builder whose brother has a motor neuron disease too and his wife was an OT. My pALS and he will discuss what my pALS could use and then he puts it in place.
 

swalker

Very helpful member
Joined
Dec 11, 2014
Messages
1,066
Reason
DX MND
Diagnosis
07/2014
Country
US
State
Colorado
There are two thing that made a difference for me early on.

The first was to stop work. I loved my work and felt that I had a special talent in the field I worked in. It became obvious that I could no longer work, but giving it up was absolutely gut wrenching. I really think that it was the single hardest thing I have had to do since diagnosis.

With all that said, removing the physical stress associated with my work really helped my body. It seemed to slow the progression down (though, whether it did or not I can't really say for sure). It allowed me to find new things that were within my capacity to do. Those other things have given me great joy.

The second thing that made a big difference was getting a wheelchair. I was not emotionally ready when the doctor told me that I should start looking into a power wheelchair. One year after that conversation I decided to take a look at them and would up getting one. What a difference it has made.

Walking any distance was a tremendous chore. I could still do it, but did not appreciate how much energy it took out of me to do so. Once I got the wheelchair, I was like a new man. I could go and go and go. My poor wife struggled to keep up with me when we out for walks together.

Providing an environment where he is able to feel comfortable making tough choices like these might be the best thing you can do. Getting a wheelchair is a big step. It is an admission that a PALS requires assistance. It also means getting a wheelchair van (or committing to public transportation) along with considering what to do about making your home wheelchair accessible. It can be a hard step.

Making it easier for your PALS to make those hard decisions might be one of the best things you can do at the early stages.

Steve
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,205
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Everyone has said it very well and given great suggestions. As you see the common themes are maintaining safety, conserving energy and prioritizing choices. These changes are not easy to accept especially in the beginning.

It took me a long time to realize that when something was just a tiny bit hard that was the time to make a chsnge or find a work around. Continuing to struggle more and more until I had to change was just silly and wasted energy.

I do believe with Steve that continually pushing to the limits probably speeds things. The six months after my move were slower than the six months prior. And the changes in how I feel and function are actually a positive improvement. I don’t think I am stronger but I can do a little more of what I want. I think this is mostly due to not having to fight stairs.

An afo as mentioned above is a great help for safety and energy. I think you said he was getting that?
 

Thomas933

Active member
Joined
Dec 4, 2018
Messages
76
Reason
CALS
Diagnosis
12/2018
Country
Uni
State
RI
Nikki - yes, he has an afo for each leg. I agree with the part about making changes quicker and not fighting things. He is not good at helping himself because he hates "making a fuss" and the thought that people have to change what they are doing for him. So, I have started being the buffer so that we change because of me assuming he needs/wants the change.

Thank you all for the suggestions -- I am compiling them in a doc. and will give them to him after I personalize it and let him think about what he wants to do. It's exhausting to be trouble-shooting all the time but I am getting better at knowing when to step in and hanging back. I've also gotten better at not trying to fix everything the moment it happens - a big change for me. I don't want him to suffer, it hurts my heart but I know we will suffer together and it will be okay. There is a lot of good stuff, too.

Thank you all again,
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,513
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
home
It would be great if you come back to this thread and let us know what strategies he chooses and even how that works out.

The big thing is that because we are all different, and because ALS progresses differently in everyone, we all need to find our own strategies. But because we have lots of people talking, we find common things and can hunt and peck through what others did to find what works for us. So glad you asked these questions, this is a great thread!
 

Thomas933

Active member
Joined
Dec 4, 2018
Messages
76
Reason
CALS
Diagnosis
12/2018
Country
Uni
State
RI
Tillie -- happy to come back and let you guys know what I'm finding!

And, I agree we can all learn so much from each other.
 

Thomas933

Active member
Joined
Dec 4, 2018
Messages
76
Reason
CALS
Diagnosis
12/2018
Country
Uni
State
RI
I thought I would come back to give a quick update while I have some time. My hubby left yesterday for a trip with our son and I was nervous for him to go alone...A few things that I did that helped ease my nerves and also helped him/them (I think)

1) I enlisted my "tribe". I reached out to our friends to ask them if they could help research handicapped accessible places for them to go. People always want to know how to help and this was a good way to let them. And, it saved me time.

2) I called the hotel and requested a barrier-free room (not just an accessible room). I had the manager email me that he was getting this room and forwarded it to him in case something happened when they checked in.

3) I called the airline and requested wheelchair assistance at the Airport. He texted me on the layover and said they had to change concourses and having someone wheel him there was "nice".

4) I emailed ahead to places I knew he was going to find out the best places for him to park, enter, etc. I forwarded him the emails so he had the info.

5) I made sure to consolidate all the packing in a large roller bag that my son could carry so that my husband did not have to deal with luggage.

6) I worried and worried and worried...and then I got a pic of them at the beach today with 2 big thumbs up.

That's all for now. I will continue to update after they get back and I start to figure out more ways to help him (and how to help him manage me helping!).

I had like 4 ugly cries yesterday which I think was just a release of all the emotion of this trip. He went to Spring Training baseball in FL - a thing he always wanted to do "when he was old". I hate this f-ing disease so much but I am trying to not look too far ahead. I know I'll have bad moments as we navigate through all of this. For today, I am happy he is happy and I hope all of you are happy for most of today too!
 

Jrzygrl

Distinguished member
Joined
Feb 14, 2017
Messages
490
Reason
CALS
Diagnosis
08/2014
Country
US
State
NJ
Great job! My DH and son used to go to FL for Spring Training games too. They both cherished th "guy" time together. (They had to stop going when DS got to high school and couldn't miss school.)

FL is more accessible than a lot of places. And we have found baseball stadiums EXTREMELY handicapped friendly. DH and I went to a game in FL when he was starting to have trouble walking. We rented a transport chair which was delivered right to the hotel. They are lightweight and fold up to fit in a car trunk. I'm sure your son could handle pushing him in it. There is also always accessible seating available. It's usually a cordoned off flat area. The person in the wheelchair wheels in, then an attendant will set up chairs for any accompanying people. He (or you) can call ahead. You can usually also exchange regular seats for accessible right at the box office. I'm sure they'll have a great time!

Two thumbs up to the whole tribe!
 

Thomas933

Active member
Joined
Dec 4, 2018
Messages
76
Reason
CALS
Diagnosis
12/2018
Country
Uni
State
RI
That's great to know -- we actually have a transport chair that a local organization gave us. I think we will be seeing a lot of baseball games this summer -- what's better than that?

Thanks so much!
 

Avocado

Active member
Joined
Oct 8, 2017
Messages
44
Reason
CALS
Diagnosis
02/2017
Country
AUS
State
Western australia
Wow, some awesome suggestions here! I second getting a wheelchair early to have on hand. It will enable both of you to get out and do things he might not feel he has the energy to do otherwise. My PALS wasn’t keen at first, but we got a lightweight travel one and kept in the car to have on hand and it really was indispensable to help him conserve energy and do more.

Some
thing I did when my PALS was at the stage of using a walker was to put higher legs on our couches. There was a point where he found getting up off of the couch became very difficult. I got the longer legs at the local hardware store. They only added a few inches but having it that bit higher made it possible for him to get off the couch on his own for much longer.

When my pals wasn’t able to lift a glass any longer, I fashioned a cup holder from a flexible ikea lamp to hold his glass with a straw up in front of him so he could sit and sip coffees in the morning or a glass of wine at night. It made it possible for us to sit and have a relaxing drink together without me having to get up for his every sip, and without him feeling he had to down his beverage quickly so he didn’t keep me standing. We still use it and it has more than anything given us that occasional glimpse of normal life- we can sit and have a coffee togeher almost like normal people.
 

Thomas933

Active member
Joined
Dec 4, 2018
Messages
76
Reason
CALS
Diagnosis
12/2018
Country
Uni
State
RI
Hello -- I just want to check in and say I haven't forgotten about coming back to tell you what is working for us -- we are still trying to just live our lives and barely have time to talk, adjust, etc.

I will say that I have taken to heart all our your words and tried to work your suggestions into our lives.

The biggest news is that he seems to be interested in a scooter right now just to move from place to place. He is still able to walk with a cane and likes being able to do that.

I promise I'll be back in a few weeks to report out what we are doing...
 

Jrzygrl

Distinguished member
Joined
Feb 14, 2017
Messages
490
Reason
CALS
Diagnosis
08/2014
Country
US
State
NJ
I was wondering how you were doing Thomas. Hope "the boys" had a good time at Spring Training! Keep doing what you're doing!
 
Top

AdBlock Detected

We get it, advertisements are annoying!

Sure, ad-blocking software does a great job at blocking ads, but it also blocks some useful and important features of our website. For the best possible site experience please take a moment to disable your AdBlocker.

We appreciate your understanding and cooperation!

I've Disabled AdBlock
No Thanks