Appreciate any and all thoughts - a poll of sorts

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jonico

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Hi Everyone,

I'd really appreciate input from anyone seeing this post, not just PALS and CALS/past-CALS (although I value those opinions the most). Please let me know what brings you here if you're not one of the three.

If there was a service for PALS where someone came and picked you up (or your PALS, if you are a CALS) in a comfortable mobility vehicle and took you for an outing of your choosing, or one suggested by the driver, would that be something you could envision finding worthwhile? Would it be helpful if the driver had a PWC for those who don't have their own Power Wheelchair option? I understand it could be varying degrees of challenging to get a PALS comfortably situated in an unfamiliar wheelchair, but I'm wondering if conceptually offering a PWC for the outing could be a plus. Outings could be anything from a walk/PWC ride on a bike trail or around a park, to a visit to the mall or a museum, or any number of other options. I'm not talking about medical transport, as there are services for that.

The person providing the service would be a former CALS and have a good reputation with the local ALS Center and State Chapter. The ultimate goal is really twofold... First, to offer companionship and perhaps develop a friendship between a PALS and someone who has been through a similar experience with their own loved one. Second, to offer a chance to get out and about, get some fresh air and perhaps explore beyond what is currently possible, given a PALS support system. The driver would be able to bring both a PALS and a CALS, and even another person on the outing if so desired. This would be available to any and all PALS, whether they have lots of support or very little...with priority given to those

I understand there are a number of things that must be taken into consideration, including but not limited to, insurance and the inherent challenges of keeping a PALS comfortable and safe for a couple/few hours.

Again, I'd love to hear any and all thoughts. Please don't be shy. Let me know what you think.

Thanks...Jon
 

Nikki J

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There are obviously lots of logistical challenges but the idea is very lovely. Not all PALS have the resources to get out and a change of scenery/ small outing would be a great gift. I am less sure about the power chair I , being the worrier that I am, would be afraid to commit to an outing in a chair that might be hideously uncomfortable. I don’t think the need for a chair would happen that often though as your target group would probably have some kind of chair they could use.

it isn’t at all the same but CCALS here has a van loan program. it might be worth checking around to see what programs exist elsewhere so you could get advice.
 

jonico

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Thank you for sharing your thoughts Nikki. CCALS sounds like an amazing organization...Jon
 

lgelb

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Like Nikki, my feeling is that from a liability and comfort perspective, if someone needs a power chair for postural support, a random chair might not be comfortable and they might not operate it that well on the first go. You might have someone else operating it, but the sensation of being in one and having someone else operating it, both possibly for the first time, would likely overshadow the outing itself. It is, after all, an adjustment.

So I see maybe a different niche: someone who has their own manual or power chair but not a van -- perhaps the cost has been prohibitive, the caregiver isn't sure they're up for it, etc. Of course, you can rent one for a day but for someone who's never done that, it could be daunting. Or it could be an outing that the caregiver would love another person because it is a complex destination to navigate.

The outing could be as you describe -- pick up 1-3 people, the driver could operate the power chair if needed, or walk alongside if not, etc. It could be respite for the caregiver or an outing where they have less to do.

Just some thoughts -- Laurie
 

pittsburghgal

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Jon, My husband and I would have loved this if it existed. We did not have a van and the ALSA would only provide transportation for medical visits. We tried a senior transportation service provided by our county at a reasonable rate but once we had to wait 2 hours for them to pick us up to return home which was just not acceptable due to his condition at the time. He felt very isolated at home and actually was happy about doctor visits so he could get out of the house.

I do agree that the PALS would be more comfortable in their own chair.

Sharon
 

jonico

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Thanks Laurie and Sharon. The comments on the wheelchair are very helpful.

Sharon, I really appreciate hearing your thoughts on this. Your experience is exactly what I was wondering about. Thanks much...Jon
 

KimT

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In my area, we have terrible public transportation.

I would use it if it were available and I was no longer driving.

You can buy liability insurance if you offer this type of service. Also, why limit it to the ALS community? Progressive MS people are in chairs, too, as are people with SC injuries. I met a guy last summer who had progressive MS. He was still able to drive his van, which had been adapted with hand controls but was worried how he would get out and about if his hands got weaker.

There are lots of PALS/CALS who cannot afford a van and CALS who don't feel comfortable driving one. It might really help the CALS enjoy an outing without having to worry about driving. There is a Facebook Group for people in wheelchairs. I bet you would get dozens of replies there.

I think it would be a great service. I would never try to undertake it during a pandemic so it might be something you can further research and plan for late this year.
 
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Hi Jon - I saw this post last week and have been thinking about it a lot. Just the fact that someone would do this for someone else is so amazing. It is almost like I want to believe that Santa Claus is real again. You are so kind to even dream this idea up. From my perspective (acknowledging all the issues/liabilities, etc.), just the opportunity for PALs and CALs to go for a ride and spend time with someone else (who is so kindly donating theirs) would be awesome. That being said, I am still negotiating with my sister to get her to agree that I can take her to an ALS clinic appointment in February! She said the thought of outside excursions is daunting to her...even health appointments. That being said, having had the amazing opportunity to meet you, I can't imagine a PALS/CALS that wouldn't think going on an outdoor outing wouldn't have a very special time. If you think of anything I can do to help you make this wonderful idea happen, please let me know! I am more than happy to help!!
 

vltsra

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Jon, this is a lovely idea. We did buy a van and have a power chair, but it has sometimes been hard to get my PALS to agree to get out. I tell him every time that I don't want him just stuck in the house. And every time I take him out, his spirits rise and he tells me what a great time he had.

I would think it would be a blessing for people who don't have a way to get out to have someone who can take them on an outing. Even going to the park gets them outside to get some fresh air.

Best wishes

V
 

richdees23

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good morning jon.
fortunately, i'm not at that point yet, but i would be take advantage of such a service when the time comes. i'm in central jersey and spent alot time on trails, boardwalks, museums, etc. throughout the state...all places i do not want to lose access to.
excellent idea!
 

jonico

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Thanks Kim, Younger Sister, V and Rich! Your posts are very encouraging.

Kim, If I can pull this off, I'm thinking PALS will be my initial focus due to connections I have and understanding the community so well. But your point is well taken re: not limiting it to ALS folks. Younger Sister, you're very kind. And I can imagine how your sister finds the whole concept of getting to and from clinic, as well as the clinic experience itself during Covid very daunting. I'm pulling for you with your efforts to help her get there! V, your perspective relating to your husband is very helpful and encouraging. And Rich, Central NJ is beautiful. Who knows, maybe one day I'll make the trip down and we'll get out on one of the boardwalks.
 

KenM

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It's an interesting idea! Liability would be the main issue to work out but your ALSA chapter might be able to help with a pro bon o lawyer or cover the cost.
 

Lancasterlanie

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Sounds like a great idea. I’d go for it!
 

BarrCarr

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How interesting I would see your post. Just this week, a friend said he would come to my house, pick me up and take me wherever I wanted to go. He said I could be "a king for the day" and it would give my spouse a break. I was overwhelmed with the generosity and am stumped to figure out where I should go! Any suggestions?
 

jonico

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Thanks Ken, I'll look into that. Thanks Lanie. BarrCarr, that is a great friend you have! Your options will vary depending on whether you are wheelchair bound, or can walk, or maybe walk with assistance. In general, you might google search accessible activities in your specific area, or more broadly 'Tampa Bay'. There are some very nice parks and preserves in that part of Florida. If you like being outdoors they could be a nice option. You just want to make sure the trails are suitable to your present physical ability. Attractions like zoos or botanical gardens can be ideal. I would think some kind of a boat tour might be an option...harbor cruise or something. Not sure if they are operating during Covid and you may not be able to comfortably distance from others, but worth considering. Maybe a nice neighborhood with interesting architecture and minimal traffic. Perhaps other PALS/CALS have ideas for you. In any case, I will be very curious to hear how it goes and what you guys end up doing. All the best...Jon
 
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