Need advice!!!

[Gertiesgirl]

I often read posts that suggest "make memories" with your PALS while you can. I realize this completely and this might sound silly but How? What? My PALS struggles with getting around. We havent been to our first clinic visit for resources. I wanted to know about some of the ways others have found meaningful activities and the chance to make each day count......

 

[rmt]

Once he had mobility issues (his speech was the first to go), my husband and I watched TV together and held hands a lot. I rubbed his hands and his legs and put his hand up to my face like he used to do when he could. He loved sports, so we watched all his favorite teams and I made sure to cheer and swear at all the right times when he couldn't anymore. He also loved watching police/detective TV shows, so we had those on all the time. I remember thinking I needed to do more "memorable things", but honestly, sitting next to him on the couch holding his hand is something I treasure.

My advice is to find the everyday things that you enjoy doing together, and do those things. They don't have to be big or special things. It is the little things that matter the most. If your PALS can still talk, then talk. About everything and nothing. It isn't the big memories you miss, it is the simple everyday things.

 

[lgelb]

I guess my first response would be to debug the struggles with getting around. If your PALS needs a mobility device to be, safely, in the places you both want to be, I'd get it. Not knowing what that is, it may not require clinic. Let us know how we can help.

The approach is to do what you both love to do, until you can't. It may be in modified form, like watching streaming games or concerts instead of in person, or video calls with far-off relatives when you can't get together, but almost every passion or activity has an "adaptive version" -- through teaching, coaching, mentoring, help with specific tasks, changing schedules, different equipment/projects, possibly moving or renovating, etc.

Those adjustments can reflect the knowledge that ALS progresses, and being able to talk through scenarios together, whatever the mode of communication, so that neither of you is walking on eggshells, suffering in silence, or compromising what shouldn't be.

Obviously, you don't tell each other everything, even pre-ALS, but you're still a couple, or whatever you were at the start. ALS can't change that unless you let it.

Best,
Laurie

 

[KimT]

If your PALS doesn't have a power wheelchair, maybe while waiting, see if you can get one from ALSA loan closet. I think a lot depends on how disabled and PALS/CALS willingness to do things.

Find your local support group. When I first went to a support meeting, other PALS/CALS invited me to join them for lunch. About a dozen of us went (this was before Covid.). Some, with bulbar onset, could only eat limited things or nothing at all. Some were paralyzed from chest down but they could eat fine. One couldn't eat and hardly had movement but his partner poured a drink down his tube. We were all there to support one another. It turned into a monthly "event" that went on for about a year. We ended up going to one another's homes to continue the support/friendship.

Some PALS go on cruises. There's a group on FB dedicated to traveling with PALS. Some of them are on BiPAP most of the time and in chairs. Others have invasive ventilation. It honestly amazed me what some PALS are willing and want to do despite ALS.

I'm in a PWC but I can transfer and still go to a friend's condo to play cards every Monday. Up until a couple of months ago, I was still going in the heated pool several times a week. I'd socialize with others.

If you and PALS have friends, stay in touch, if possible. Invite them over. After one of my PALS friends passed away shortly before Christmas, his wife called me. I had just fallen and sprained my ankle so I had a loaner chair and mine was on order. She asked to see me and brought her dog for a visit with my dog. She encouraged me to go out even though I was in pain.

I have another PALS friend who is getting enjoyment bird watching. He has an app that identifies birds and now his wife and he are into identifying as many birds as they can. He said rolling out to his deck and looking for birds puts him in touch with nature and that makes him feel normal.

For future reference, I have a local team of doctors who treat me. I don't have to wait for clinic or take the 2.5 hour drive to Mayo several times a year. My local neurologist/pain management is the guy who ordered my PWC.

For me, keeping my mind active is very important. I have friends come over and I project games from my iPad to my TV that we play together.

I lost my best friend last year. She died from heart issues. Pre-Covid, she came over and watched a TV show we both loved. I'd order a meal and we'd just spend time together. Up until my brother got dementia, he and his wife would come over every Thursday to play cards and just chat.

I have quite a bit of pain so I don't travel. Early on I went to Madeira Beach. My niece has a Winter home there and she flew down to meet me. One of my friends drove me over and the three of us had three fun days together. The friend who drove was disabled. She used a walker but was an excellent driver. We swam in the Gulf (floated really) and had some great meals.

Progression has made everything harder. I just told a friend I'm so afraid because my world is shrinking. Fewer people are coming around. Everyone has different circumstances, a different budget, different rates of progression, and different likes and dislikes. Sometimes, the simple things in life are sources of great joy.

 

[MupstateNY]

it depends on what you guys enjoy doing. my spouse is helping me garden bc he knows how much i enjoy it, even though he is not a natural gardener.

 

[Gertiesgirl]

I totally appreciate the info and the encouragement! Im hoping to get her out more but especially hope to get her back to the beach! Thank you for your time

 

[lgelb]

Some beaches lend/rent beach wheelchairs -- the ones with the huge tires.

Also search for "adaptive recreation" options in her town. Adaptive boating, boarding, fishing, etc. are increasingly available.