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Ceelea

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Joined
Mar 17, 2017
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39
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Lost a loved one
Diagnosis
03/2017
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US
State
VA
City
Orange
Just wanted to post for some advice on two developments here with us - and, as always, thanks to all of you for your posts. I read everything and your sharing and generosity is such a grand help, even when i'm just "lurking!"

So on to the news - and advice request. We got mom's PWC (with head array controls, since she has very little use of hands and arms) and the learning curve is a monster! (Yes, i hopped in and tried it and it was hard to do!) It has attendant controls on the back for me to learn too - so i'm practicing, but everything seems backwards! Anyone have any suggestions for how to build up pwc driving skills? At this point we're just doing practice, practice practice.

Although to be frank, that's difficult -- she can't get comfortable in the chair - we have the provider coming back next week for adjustments, but after some practice, she reports an aching neck and an inability to get comfortable - is this part of the adjustment process? I've scanned through old posts but can't seem to point myself in the direction of advice that 'fits' :)

The third part of this is wondering if we -- no HOW we -- get to a comfortable use point of this in two weeks. Because in a fit of indulgence and audacity mom booked a cruise. so we're trying to get all the travel arrangements just right and make just 'enough' advance plans for fun without over booking. Did i mention this will be her first flight since als (she's a seasoned traveller before)? or that none of us have ever been on a cruise? It's a 'small" cruise ship, no tinder ports, on a line reviewed with high customer service, so we have good support. With 4 of us going (mom, her best friend, me and her aide), and mom unable to use grab bars we are in a suite, not an HC cabin, and we've had GREAT service so far from Special Needs at Sea. Still, Fools go ... (and we're no angels)!

Any advice about pwc training, adjustments, comfort, flying or cruising would be so appreciated. I see-saw between excitement and panic amid lots of loops around the living room behind the pwc!

Thanks so much for any input you can share.

Cee
 
Contact the airline. They can set up special transport and assistance. Wrap the controls on the chair in bubble wrap so they dont get damage. Take the seat cushion off the pwc for use in the plane and so it doesnt get damaged. Plan on something like a diaper for the trip so she wont have to use the bathroom.

Ask the cruise ship for a reclining shower chair so your mom has support. Depending on the room, you may need a transfer board. Cruise ship bathrooms are notoriously tight.
 
Here are a few thoughts.

1. Her wheelchair should be the most comfortable seat available to her. They can be adjusted and configured so that she has all the support she needs. If it is not comfortable for her, then adjustments need to be made. You can make many of these adjustments yourself, but some require additional/different equipment. Download the owner's manual and service manual for your chair. You will be amazed at the adjustments that can be made and how easy it is to make some.

2. Learning to drive a wheelchair is sort of like learning to drive a car. It took me awhile and a few holes in the walls to get comfortable driving the PWC. I recommend putting the chair on its slowest setting. Practice in a large, unobstructed place. Set up some non-damaging items like sponges and try to guide the wheelchair around them. What initially seemed impossible became second nature after a couple of weeks.

3. Learning to back a wheelchair up more difficult, especially for the attendant and especially for a front wheel drive chair.

4. Near term, and especially to prepare for the cruise, I would focus on getting the chair as comfortable as possible for your mother and on you learning to drive from the attendant controls. She can learn to become proficient with the head array after the cruise, if necessary.

Good luck and enjoy the cruise.

Steve
 
Cee,

If her neck hurts, the top candidates are a headrest that is in the wrong place and/or not enough recline setting in the back. Try moving recline forward and back, and look at where the headrest hits her neck -- should be in the middle both horizontally and vertically unless she has significant weakness on one side only. It can be adjusted from the back with a hex key. Make sure tilt angle is varied throughout the day, too. Also, if she got the "standard" back cushion, it may not be enough.

If the attendant control seems "backwards," bear in mind it can be programmed in reverse from where you have it, if that is the problem.
 
Thank you all so much. At this point, I've talked to our cruise agent and the folks at special needs at sea more than any of my friends -we've got a hospital bed, lift and commode chair for the cabin and wheelchair capable transport for all the transfers and I've talked to the airline reps, who have been fabulous-- I'll definitely bring the bubble wrap!

Hopefully the wheelchair guy will be back Monday or Tuesday for adjustments (and some pieces the put changed on delivery, so I'll bring up these points. I wasn't too sure how much was normal getting used to things and how much was adjustments needed. Lots of homework for us for now.

Many thanks again!

Cee
 
Does her chair have a ROHO air cushion seat?
Medical sheepskin on the seat can make it cooler in Summer and warmer in Winter.
A cotton towel can make the backrest more comfortable.
The normal hard armrests can be replaced by soft gel pad ones.
Torso and leg bumpers / pads can help keep one sitting straight and secure.
 
since my PALS can no longer use his hands, the pwc with JOYSTICK has been a god-send. wheelchair 'guy' had to come to house to set up the joystick so my pals can actually stay in bed and use it. we back up the pwc to the bed, put the collar on...and what we call 'spider man.' pals can use his laptop ... phone me if i'm in a different part of the house. he is connected again with his friends. re DRIVING it from the attendant stick in the back, just practice. practice when nobody is in the chair. good luck, and have a wonderful cruise.
 
Just wanted to update, the pwc tech came back last Thursday and adjusted the chair for 3 hours so that mom wasn't uncomfortable. Unfortunately, on Friday the stem popped out of the roho seat cushion and it went flat- so he's back tomorrow with a new cushion and to finish up pairing the chair with mom's iPad so she can read on the trip.
We're still having attendant "driving" until after the trip.

We picked out a Honda Odyssey van today, they're delivering that on Friday and so we'll have transport to the airport. Too much packing left to do and I have "Hoyer" lift training with the OT tomorrow. So maybe we can do this. The airlines have been very communicative and I have all your suggestions here in my pocket to practice too.

Honestly, at this point I'm excited and grateful for this trip, but am so very, very tired as she has daily progressions and sleeps in shorter and shorter blocks at night.

Sound whiny. But I'll leave it there! :)
Cer
 
Mini hijack: I would avoid "standard" cotton towels against clothing or skin in a wheelchair -- can trap moisture and wrinkles, two enemies of skin integrity. If there is a gap that foam pieces can't fill, often recommend flannel or fleece, but of course, the better solution is to buy something thicker [like a better back] to fill gaps, or reposition what you already have.

Note: "standard" back cushions are often not enough for PALS. The "default" seat cushion never will be. Note #2: the back cushion sticks on to the back, which is the underlying structure, which also comes in different variants. If you look good against the back but it's too hard, you might need another back cushion. If you don't look good, you might need height/angle adjustment or another back. Roho makes versions of all 3.

Cee, where are you guys cruising to? Someone here might be familiar with your ship.
 
Thank you - I wondered about that back, but we really haven't experimented that far - glad for the info regarding towels.

We will be on the Regent Voyager for a week. We have tried to plan every way we can to make it possible and fun and comfortable for all 4 of us... fingers crossed! I will update with the good the bad and the 'how did we do that!' If folks are interested.
 
Wow, you are doing a LOT in a short time. Packing for a trip with a PALS is exhausting, but once you get going you should have a wonderful time.

About driving with the attendant control--I find that if I don't pay attention I'm actually trying to move the control in the direction I want the back wheels to go, since they are what's right in front of me. Focus on the front of the chair and keep the speed slow. Hang in there, you'll get comfortable over time!

A cruise sounds marvelous. We are driving across country right now so that hubby can make his last (this is the third farewell tour) hunting trip. We've had to add oxygen to the mix because of elevation, and between the hunting gear and medical gear, we haul a rather large trailer behind our very large van!

Keep us posted on your trip!

Becky
 
Becky- I think your trip sounds wonderful, too!

Mom has decided she has had too many questions about everything and wants me to post a big report of prep, journey and return home afterward, so I have been low-tech and am keeping a handwritten journal of the process to type up and post as my after trip project - everything from transporting the chairs to her worries about bathroom issues and what works and doesn't--I'll definitely be sharing with anyone interested as I put that together.

Some friends of mine gave me a journal a few years go with the cover title "F-(spelled out)-ing Brilliant" in elaborate cursive. Seemed appropriate !

Cee
 
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Again, Becky, if you'd prefer you can have the direction the joystick controls, reversed. Many people do.
 
Just a quick update from the last night of our cruise. It has had rocky points, but has been a wonderful "grand voyage" of 7 days. We will write up a summary to share when we get home, but your advice was so helpful. Some things went just like we planned, others, like the destruction wreaked by the airline, on the mec and manual chair did not.

Tons of lovely and helpful folks everywhere. Amazing
 
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