Old 04-15-2019, 05:04 PM #1 (permalink)
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Default PALS chat thread ( PALS only please)

Hi everyone

I am starting this thread again. We PALS have been too quiet!

Please continue to start threads when you have a specific issue or if you have something to contribute or discuss that you would have put in the non clinical area still do so.

This is more just to chat among friends- please letís keep it going.
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Old 04-15-2019, 05:06 PM #2 (permalink)
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Default Re: PALS chat thread ( PALS only please)

The weather here is limping towards spring still. Today is Patriots Day and Marathon day here.

How was your day?
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Old 04-15-2019, 05:50 PM #3 (permalink)
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Default Re: PALS chat thread ( PALS only please)

Iím trying to swim 1-2 times a week if I can find people to take me and help me (either my CALS or another friend). I now have to use the wheelchair any time I go anywhere. So the challenge has been figuring out what I need to bring, how best to get in and out of swimsuit, how best to transfer to the hydraulic lift by the pool, etc. Today the experience was largely successful.
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Old 04-15-2019, 05:53 PM #4 (permalink)
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Default Re: PALS chat thread ( PALS only please)

Oh good for you. Kay might have some good tips. I know she logged quite a bit of pool time.

Maybe. An easier on swim suit might be a design project?
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Old 04-15-2019, 08:23 PM #5 (permalink)
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Default Re: PALS chat thread ( PALS only please)

I went down to our "heated" pool today. I'm a big baby because the water seemed too cold for my muscles. The temperature said 83 but it just felt too cool. The outdoor temperature was around 80.

I'm still having pain issues but just being out in the sun and being able to float in the pool always makes my mood better.

Karen, All my bathing suits are tight due to weight gain. I have one that is still loose and it's easy to put on. We don't have a lift so I have to walk down stairs. They do have good railings all the way in.

I think Kay had a pool at home and had a lift put in....I might be wrong.

I plan on using it as long as possible. I thought about wearing men's trunks and a t-shirt with built in bra. The top is the hard part, for me.

I also use a flotation device around my waist. Noodles cause issues with my rotator cuff. Last year I was in the pool most days from April through October.
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Old 04-15-2019, 08:48 PM #6 (permalink)
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Default Re: PALS chat thread ( PALS only please)

I too am struggling with bathing suits because of a change in my overall shape (with Buddha belly) . For now my pull-on suit works well enough. The hydraulic lift at the YMCA pool I go to is a godsend as I wouldnít be able to climb up pool steps, even with a hand rail.

I have a buddy who has spinal muscular atrophy and uses a hoyer lift to get into the hydraulic lift. He was able to talk the YMCA into getting a Hoyer; he brings his own sling. I met him at the pool last week and got to try out the hoyer.
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Old 04-15-2019, 09:27 PM #7 (permalink)
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Default Re: PALS chat thread ( PALS only please)

I also love being in pools, where i live there are no lifts - i have to go down steps into the water. My husband holds my hands - I can only walk with support, but in water i can walk, move around and float on my back. He has to help me get into upright position again. I can't use my arms for swimming anymore, but with legs i can kick a bit while holding on to a little floating board. It feels so relaxing just being in the water, I want to stay for hours.
My hubby/CALS puts on my bathing suit and often grumbles because he finds it too complicated.
It is the hottest time of the year here, 40įC or 104įF and above, so I prefer cool water and sitting in the shade.
Thanks for the thread, I think I like chatting here since I start losing my Voice slowly. Despite the love and care of my CALS and friends I often feel very alone in this.
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Old 04-16-2019, 10:09 AM #8 (permalink)
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Default Re: PALS chat thread ( PALS only please)

Bodhi great to hear from you. Love your profile picture

If you are struggling with a one piece Ladies why not a tankini? I get you may want more coverage than a standard two piece this would be lots easier.
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Old 04-16-2019, 10:18 AM #9 (permalink)
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Default Re: PALS chat thread ( PALS only please)

The tankini unfortunately didnít work for me (I bought one and sent it back), but otherwise seems like it might be a good solution for many.
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Old 04-16-2019, 10:48 AM #10 (permalink)
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Default Re: PALS chat thread ( PALS only please)

That’s too badCurious why? ( if not too personal) I have seen all kinds of styles for both tops and bottoms
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Old 04-16-2019, 11:07 AM #11 (permalink)
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Default Re: PALS chat thread ( PALS only please)

Thatís a good point.
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Old 04-16-2019, 11:11 AM #12 (permalink)
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Default Re: PALS chat thread ( PALS only please)

Yesterday was quite an emotional day here. The tragedy and yet now hope for Notre Dame. Also the Boston Marathon which is a major event here. ALSONE fielded a team and one of the Mass General research coordinators ran
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Old 04-16-2019, 11:57 AM #13 (permalink)
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Default Re: PALS chat thread ( PALS only please)

Nikki,

Your post made me cry. Mass General rocks. I'm so glad you are there.

I have no shame about swimming. If I have to wear some bizarre clothing to get my fix, I will. I lost my dignity a long time ago.
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Old 04-16-2019, 12:27 PM #14 (permalink)
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Default Re: PALS chat thread ( PALS only please)

oh how I miss swimming p!

I gave up on swimsuit and wore gym shorts and t shirt. Then I wore diving vest for warmth. It was at the a private club with lift, and I didn't care about fashion!

I would pull chair right next to lift and two people would help move me over using gait belt to lift.

or my strong caregiver would just lift me over.

we had whole routine we did in water. It was fun and great rom and moderate exercise!
Kay
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Old 04-16-2019, 12:40 PM #15 (permalink)
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Default Re: PALS chat thread ( PALS only please)

thanks Kim! I am lucky.

Kay I am so sorry you can’t get to the pool any more . You had some great photos of you and your team there. I could tell everyone was having a blast
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