Able and Unable - Do we still go out?

[Tomswife]

PALS Tom is at that precarious mobility stage. He can stand with difficulty. Shuffle a short distance. And, he is stuck in the den. I would like to get him out more. Friday we went to the Montclair Museum of Art, and I ran some errands with him in car. Saturday we met our daughter, husband and young grandchildren at a local park that has paved paths. We had the kids in a wagon and PALS in his wheelchair.
Saturday night...he called me. He had slid down his recliner and was hanging off the edge. I put the strap on under his arms to help me move him to the floor. It was after midnight so I called the police for non emergency help. They were friendly and got him back in the chair. Call anytime! They said.

I am now realizing that this inability to get up can happen anywhere. Three weeks ago, if he fell he could with my weak help get back up, with time and props. Now. No.

Do we no longer go out? Do I hire someone to go with us (less fun). Just throw caution to the wind and go?
Thoughts? Thanks.

 

[Nikki J]

This is of course individual. you are currently using a manual wheelchair? Is a pwc coming? The pwc will have tilt so using that he wouldn’t slide out. But if you are with him in the manual chair and he had a seatbelt wouldn’t that be ok?

having an aide with you does change the dynamic but if it is the only way I personally think it is worth it. I have a number of pictures of events with aides as part of our group

getting out is so important for both of you I hope you can still do it.

 

[Mary2]

Sorry, Tom is having falls. We were advised that in our county we could call for help three times for falls, in a year but after that there would be a social services meeting to discuss the issue. Every county is probably different.

 

[KimT]

In my local support group, prior to Covid, we would all go out for lunch. Three were unable to use their arms and legs and one was paralyzed from the shoulders down. All three had no trouble in their PWCs and two of them had their CALS feed them regular meals. The PALS with bulbar onset had a tube but could still eat certain food, just very very slow. Since we were all in the support group we could talk openly about challenges. All three men in PWCs used condom catheters. Another felt more comfortable in an adult diaper so he could stay out longer without having to go home. They were in various levels of pain and used different drugs to control it. Mike, one of my favorites, said he would go anywhere his wife would take him because it made him feel less depressed. Since he was paralyzed from the shoulders down, his wife had an attendant control on his PWC. The staff at the restaurant knew us so they made immediate table accommodations for the PWCs the minute they saw us come through the door. After Mike passed away, his wife came to see me. She told me no matter how much pain I was in, get something to alleviate it and go out as much as I could. Yesterday and today were cloudy and I could feel my mood darken. I decided to go out by the pool and just get light on my eyes. It helped.

I think those trips to the park and socialization with friends and family are key in providing the best quality of life for a PALS.

However, I'm looking at it from an extravert's eyes. Some PALS get more enjoyment from sports on TV and visits from special friends.

I'm so sorry Tom is falling and slipping. Can you get a loaner chair until he receives his PWC?

 

[Mary2]

Did everyone with a PWC have a disability van or did they use transport services to get to the restaurant?
There must be some good deals on disability vans around. We have put very little mileage on ours.

 

[lgelb]

As far as falling out of the recliner, sounds like you need a Hoyer lift anyway even if you're not routinely using it yet. But of course the object is not to fall. You could use a stretchy foam Velcro type belt to secure his core when he is in the recliner, if it does not tilt enough/raise legs to prevent that.

Nikki has pointed out that even manual chairs can be equipped with reliable hip or chest belts. I used to work for a firm that makes these so I am not going to get commercial here, but you can PM me if you like. But for sure if a PWC order (where of course you have the same choices of postural support), is not underway, I would get that started.

Mary, we did not have a van. We wheeled around downtown (where we lived) using an attendant control, took a variety of public transit ,and rented a van a couple of times. Our last outing was 3 weeks before Larry's death.

 

[affected]

I know things are moving fast, and that is scary. My Chris was rapid progression and we honestly saw changes every single week and I was racing to keep up.
I am not sure where you are up to with getting a PWC? You really need a hoyer lift as well.
Encouraging some assisted movement and standing transfers I believe is good while safe, and for my Chris he needed it for his own emotional wellbeing. We found that on waking and at night he was not as stable, so we only did standing and walking from room to room with a walker and me behind him during the day.

A PWC will even allow you both to get out for a 'walk' at the least, and if you find out what transport options there are in your area you can possibly even do outings taking a bus together.

Safety really is important. PALS fall hard. Injuries often don't heal well.
We had some awful falls and injuries, they definitely hastened his progression as well.

 

[KimT]

Mary,

Everyone who was confined to a PWC had their own transport. There are long waits for public transport here in the greater Daytona Beach area. There is a blind woman in my building who has to wait hours to be picked up.
Mike's van was a second hand that he got for $20,000. His wife later sold it for the same amount. It was a very good deal considering it had low mileage and everything was power on it. They put about 4,000 miles on it during the two years he had it, mostly just around town and to State parks.

 

[affected]

Kim and yet Steve Walker here takes a bus in his PWC often. So I guess it varies on the transport and what kind of transport you wish to use.
A van of your own is the ideal of course!

 

[Nikki J]

It really does vary even in the same area. Before I moved there was neither accessible public transit or paratransit. Now I have both. Here the paratransit program is available if you are within a certain distance of the public system. They are essentially replacing what able bodied people have. I think NJ where Tomswife is has similar rules.

 

[Mary2]

Tom's wife, I hope after a while a team will fall in place for you. I am able to text the power chair sales rep and his technician is very nice. I have the number for the respiratory therapist. I have the cell phone number for a palliative care nurse. A lot of our equipment came from the same medical supply store in town and the manager is very helpful. I feel we paid too much for the van. My husband was still working and we didn't know he had ALS. He did drive the van to work for awhile and then I drove him to work in the van for a year. At least it sounds as if you a steady respiratory therapist...that is a start.

 

[Tomswife]

Thank you everyone. You all mean so much to Tom and me. Can't do this without you.
- we go for evaluation for PWC tomorrow. Once we have a "specification " for numotion, then I can reach out to ALSA for a loaner.
- there is a van service in the area for PWC transport. I will call and get prices and find out how the service works.
- I have looked at power lifts, but we cant accomodate the wide V legs. I will reach out to ALSA for advice.
- when we go out now he is in the manual wheelchair. The transfer to car is tricky, but I did get a slide board.
- At home. If we have the lift i may be able to get him back up if he falls.

Thanks. TW

 

[affected]

It's all a LOT I know.
You are doing brilliant in navigating so many different strategies and equipments, while only being a few months since diagnosis.
I hope you take a breath at night and appreciate how much this is. During the day you are just running to keep up.

 

[Cowboybob]

My advice is to get Life Alert system. $98.00 a month. I was diagnosed in June have fallen three times within 30 minutes I was back on my feet with the help of 911. No cost other than the $98.00 plus $50.00 set up fee. I weigh 320 pounds no way my spouse is getting me back on my feet. Luckily I didn’t break anything.

 

[lgelb]

Not to disparage your solution, Cowboy, but $98/month is pretty pricey. The Freedom Alert button, among others, has no monthly charge. If someone is at significant fall risk, they shouldn't be alone, either.

Besides the pendant systems, options, for the benefit of others, include a switch-enabled or voice-activated call button, phone home screen shortcut, voice assistant, smart watch, whatever you have to work with depending on your capabilities.

But given the risks of any fall (in September, my dad died of one) and the more difficult healing that comes with any mobility losses, coupled with the risks and limits of our emergency medical system these days, I'll repeat the mantra: don't fall. There's a lot of assistive tech out there in your corner -- let us know how we can help.

Best,
Laurie