Pool/hydro therapy

[Danijela]

This is something we have been trying to acces for while, to no avail. Here in the UK there seems to be no will to provide hydro theraphy for MND patients. Cold weather and lack of space/land means that there is no culture of private pools - I have never been to a house with a pool! One can book into a private session which costs a lot of money and we can not afford it. I know of one person here in the UK who is forutnate enough to get occassional pool therapy funded by the national health service. But it is a post code lottery and where we live there is absolutely nothing.

We have tried our local public swimming pool, which claims to be 'therapeutic'. The water was warm enough, but it was not geared towards L's needs. There were no structured sessions there, and the whole getting in/out experience was very tiring and time consuming, to the point where it defeated the enjoyment of being in the water.

Does anybody go to a regular pool sessions? What does this involve? I am aware that respiratory issues can get worse when in the water - how do you deal with this (are there special floaters one can use)?
Does anybody know of any scholarly articles about the benefits of hydrotherapy for ALS patients? I am thinking of starting some kind of campaign...

Dani

 

[Georgia Peach]

Hi
We are going to a water movement class at our local public pool outside Atlanta. The instructor is certified for arthritis not ALS but she is very good and very concerned. They have a lift that we will be able to use eventually but right now my husband is able to walk the steps down into the pool. He doesn't swim but the instructional pool in heated, in doors and not over our heads. He holds two noodles to keep him afloat and it really seems to help him move his feet. We are going back today. Hope you can find somewhere that you can swim. The YMCA pool in our county is also an option for us to attend. We have an appointment with the VA PT later this month to make sure this is a good idea for my husband. Regards

 

[Mick n Ang]

Hi Dani,

I understand that there is a hydro therapy pool being built in Bolton as part of one of the new Uni buildings in town and that PCT physio therapists at Bolton may have access of use to it once it has been completed so I would contact them if I where you regarding L being able to use once it is finished, should be this year I think. Hope this helps your plight xxx Ang

 

[Jellycat]

Hi Dani, we had access to a hydrotherapy pool in our local hospice which had both a hoist and stretcher access. My mother benefitted a lot physically from this therapy which was guided by a hydrotherapy physiotherapist, plus she enjoyed being in the water since she was a powerful swimmer pre als. In addition in the city there are 2 fully accesible pools-so we are well served. One of those is run by the wheelchair association. Is there an equivalent association in the UK who might help?

On the respiratory front I was told that once the fvc goes below a certain level pool is not recommended since the pressure of the water on the chest causes more difficulty. Can't remember the percentage quoted to me (from European regulations).

Hope you find a pool soon

 

[mare]

Hi Dani-

My husband has always been a swimmer (2miles per workout), and that was his aerobic workout year-round,
so it was a natural to continue after his diagnosis. We are fortunate to have a wonderful community fitness facility that has a gym, a weight room, a large indoor pool etc. The pool has a lift chair to facilitate easy entry & exit from the pool. (requirement here since the ADA laws were passed)

So, he didn't need any "formal" class or instructor- he just continued to swim his laps in the pool. I do feel this helps with flexibility & ROM. Of course, overtime he has had to decrease the no. of laps & his speed. But he does like how he can "walk in the water"- how it holds him up. And, as you noted, that is why caution must be taken for those with respiratory issues. The water pressure can inhibit a full breath. My husband has no breathing issues at this point. However, he has started having shortness of breath from exertion, I believe. He will stop at the wall & stretch until he catches his breath, then continue. And where he would swim 2miles in 45min. pre-ALS, he is down to 1/2mi in 40min. (which includes his "cooldown" time).

But, he may have to "hang-up his goggles" soon. Started having weight loss- swimming may be burning too many calories. (this may be the goal for somebody else, but of course not for a PALS) Depending on what you mean by therapy- just getting in to do ROM exercises or actually swim laps, may be something to consider. (husband does not "swim" recreationally; only uses pool at this facility.)

We have rehabilitation hospitals where people go for intensive therapy after accidents, or surgery, or even strokes. These hospitals always have pools where patients get hydrotherapy from the PTs. (and of course there are lifts for them to enter) This would be a specific doctor's order; I'm not sure if people continue to do this after they go home. Perhaps in the UK you have these type facilities you could get access to. Maybe this is what Mick n Ang was referring to?

I know Kelly's husband has done pool therapy (maybe still does?) & he has a bipap.
Perhaps she will see this thread & give her experience and knowledge. (or pm her)

 

[arkallen]

I go to a hydrotherapy pool twice a week. I just love the feeling of moving freely in the water, it's bliss! Down with Gravity! I find that any actuall exercise can be detremental, so I concentrate on a series of stretches that I repeat for about 30 minutes. The water temperature is about 38 degrees. I think it's terrific and I always feel better for it; and I notice it if I miss a sesion. The breathing thing is very evident to me, and so I tend to stay in shallow water where I can keep my shoulders out of the water. The extra pressure of the water certainly does take away some breath and I find I have to concentrate to keep a headache away sometimes.

 

[Danijela]

Thanks everyone for your suggestions. Swimming laps is not a possibility any longer (he could do a little of this a year ago) but stretches and feeling of weightlessness in the water would be beneficial. We need to explore some local options further, will keep you posted how we get on. Dani