Went swimming

[halfin]

Wednesday I tried swimming for the first time since diagnosis. I've been wanting to try it for a while but we have been super busy with a remodel, plus it's been hectic at work. My strength is going but I can still walk a moderate distance, so I hoped I would be able to swim a little, or at least kick with a kickboard. It frustrates me that I can no longer exercise, I miss that good feeling of exertion and being out of breath and hoped I could get it in the pool.

Fran and I went to the YMCA mid-day and I used my WC to get back to the pool area. I could have walked but was afraid I'd be too tired after the workout to walk back. At the pool itself they do have a special water wheelchair with a long ramp to help disabled people get in the water, but I didn't need that. I did use the ramp and railings to get in. One problem was this meant that we were just inching into the water and it felt cold! I was always one to jump in and get it over with, it was tough feeling the cold water climb up my legs bit by bit. And then as guys know when it hits that certain spot you really feel it. (The water was actually pretty warm, about 80, but that still felt cold.)

It felt good once I was in but to my disappointment I really couldn't swim, or even kick. It's my upper motor neuron problem, I have no coordination and can't move quickly. I did manage a sort of frog/scissors kick, but it wasn't too effective. I tried a little freestyle but between my weak arms and uncoordinated legs I couldn't do it.

What worked best was a simple underwater stroke, like a breast stroke but all underwater and not trying to breathe. It felt good to stretch out and feel my body moving, feel the water flowing around me. I hadn't brought goggles because I thought I'd mostly be kicking, but I wish I had as that would have made it easier to just keep my head down.

We also did quite a bit of walking up and down the shallow end, and that felt good. It was a shock then to come up the ramp out of the pool and feel my weight hit me. I felt pretty normal walking in the water and forgot for a minute how much harder walking is. So I was glad to have the WC there although we had not anticipated that I would be in a wet bathing suit and need to ride my chair into the locker room. We sacrificed one of our towels to make a pad for me to sit on and then shared the other one. The Y has a family/handicapped bathroom+shower so we used that and it worked OK.

Afterward I was disappointed that my dreams of how swimming would feel didn't quite work out. I am having that kind of unhappy surprise more often. I feel adjusted to my limitations in daily life but when I go somewhere and do something that I haven't done in a while, it hits me hard as I discover that I can't do things the way I remember them.

But still it was actually an enjoyable experience, good exercise and good stretching and range of motion work. The water felt really nice and I do plan to do it again soon, this time with goggles and an extra towel. Plus I think I will just jump in (or at least sit on the side of the pool and slide into the shallow end), that will be easier than that torturous creep down the ramp! So although it was an adjustment, I think this is something I can enjoy for a while longer anyway.

 

[Danijela]

Thanks for sharing and I'm glad it was an enjoyable experience in the end. I
think all pals can benefit from some form of hydro therapy and one of the pals here in the uk was going regularly and doing stretching exercises in the water until
her breathing deteriorated and she was advised against it.

My partner goes swimming at the small pool at work, he can still
move in the water (swim breast stroke) even though his hands and arms are atrophied. We also take our baby boy to waterbabies class, in a really warm pool which feels much nicer than the local one.

 

[irismarie]

I have just this week had two invitations to go swimming but in private pools without those wonderful facillities you have there. I have been excited and waiting to make the move, thinking that I would be able to swim. Disappointing to hear your experience, though as you say, even that was better than nothing.
Shall take goggles now. YOu see how useful our posts are to each other.
THank you, Hal, and here's to more swimming

 

[Erica]

Hal., I'm glad you enjoyed your swimming.
I'm trying to go to the pool at least once per week.
I don't swim; just walking and low impact exercise. I found that some streching exercises that I could no longer do at home were OK in the pool.
Erica

 

[helpinhand]

Question does anybody know if you can get into the pool with a PEG?

 

[kelly]

Hal,
I am sad and happy after reading your post about swimming . ALS changes the way we look at everything. My hubby goes to pool therapy two times a week. We have the most amazing pool therapist. When he first started therapy he was able to walk with full support in the pool. Now, pool therapy is for relaxation. It is the only time during the day when he is totally comfortable and free of distress. We are fortunate to have the most amazing therapist....so patient with the ever changing challenges of ALS. Watching my hubby in the pool is so peaceful. There is also an amazing group of people that enter the pool after him and have become part of our support team. Always there to bring a smile to his face. Pool therapy has probably been the one and only positive thing throughout the battle. We actually revolve our whole week around pool therapy. We are also fortunate to have our own pool..difficult to keep warm enough with our upstate NY weather. When my hubby went on disability his company had a fundraiser in order to purchase a pool lift for us. I am able to get him in the pool...definitely challenging. I pray that this summer I will be able to physically handle it knowing what it means for Andrew. Last summer I was able to put a life jacket on....propped with noodles (try to get the visual) and he was able to lay on his back and move his arms and kick his legs. This summer will be different...very different..but we will adapt. Andrew has a PEG...and we have had no problem in the pool.
Our recent battle is that we have been recommended to receive hospice services. As you know on hospice you can no longer receive certain therapies. Our local ALS center is having a huge meeting with the Central Hospice to try to get it approved for us to attend. If Andrew can not receive therapy we will not go to hospice....that is how much it means to us! Sorry for the ramble...it is just soooo important to us.

 

[Zaphoon]

Hal, I'm sorry for the disappointing pool trip.

I have found bowling to be a real challenge with not being able to bend very well. Last time I tried it, I even used that really light, pink ball that the girls use. It didn't work so well.

I've given up bowling.

 

[pepsiman]

Kelly,
I'm trying to wrap my head around why hospice would deny Andrew pool therapy. It's not exactly a life extending therapy, merely a quality of life issue. Is it a matter of who pays for it? I can sort of understand them not signing on for a vented patient since it can then be a rather openended commitment on their part (although I don't agree with their stance there either) but there's nothing about a little relaxation that is likely to change the outcome in any significant way. If it's just who pays or them being unwilling to be responsible for his care during the sessions, could you pay for it and continue with your existing support structure? I probably should just stay out of this conversation given how bad our experience with hospice turned out. Bad memories color my opinion of a service so many find helpful. I really hate how difficult everyone makes life for all of us and our PALS during a time when they should be bending over backwards to help.
Dick

 

[irismarie]

Kelly, here we go again, having to gather precious resources of energy just to fight the system::::::: I am so so glad yto hear how much the swimming helps your husband

I think my friends are just going to have to take my wchair as neer to the edge as possible and tip me in;-) might be fun.

Re bowling: yesterda I had a hairbrush in my hand and wanted to throw it through the bedromm door onto the bed (rather than all the manoeuvring to get through the doorway) . I know my arms are weak so took as massive a swing as poss and threw, thinking the bed was a big enough target (remembering I was a tennis and squash coach). The brush flw up into the air at an amazing velocity bounced against the ceiling and came back down on my hear. It was soooo funny