AnonymousAugust 3, 2009 at 1:55 pm
It took a while to get my insurance company to authorize this. As I mentioned, I have very good doctors. Even though the Aqua Therapy was ordered by my neuro, as he did not want me legs to start contracting, and after the insurance initially declined the authorization stating basically that because I had advanced CIDP that it would not make me better, and my neuro then wrote them a letter detailing the necessity so my legs do not atrophy and contract badly, it was my Primary Care Physician who got so pissed off with the insurance company, that he called the Director of my insurance group, and detailed to him my decreasing health and the need for the aqua therapy. After that phone call, my doc told me to never worry again about any declines, and that they would be authorizing the request.
And they did. And my doc told me to tell him again, should my insurance company decide to decline something again, and he will go after them again…I have a VERY GOOD DOCTOR!
Anyways–I wanted to tell you all here, how much I enjoy this therapy. I have been doing it now for about two months. They initially had me going twice weekly, but being that I told them I know I won’t be getting
“better” with the therapy, and that it is so my legs/arms will not contract up,
I cut it down to once per week. This also stretches out the insurance authorizations, since they only authorize 12 visits per request. (They had to already request a second set of visits.)
They have a lift that will put you in/take you out of the pool, so you don’t have to worry about that. It is run by a Physical Therapy company that rents a section of the pool from a local YMCA. (In California, the YMCA’s are huge, and usually have two pools, like the one I go to, and are kept spotlessly clean.) They have full showers, including one bench seat/shower for those in a wheelchair. And they have tons of lockers, with the handicap lockers at the end.
They put on two bouyant strips that wrap around your mid-body. Between the water and the bouyant strips, it takes the weight of your body off your legs. There is one physical therapist, and one therapist assistant, for about 3 or 4 people. They ask if someone can come with you if possible, and my partner comes with me, though it is not required. This way they don’t have to constantly watch me while in the pool. The excercises are walking across the pool, then all kinds of excercises with the legs and arms…bending, lifting, kicking, etc. And they use some tools as well, such as a float with an opening that you put your foot in, and try to bring it to the bottom of the pool. And plastic boxes that you put your hands in, to make resistance in the water, as you do different excercises with your arms in the water.
You do the best you can. The whole idea is to excercise the limbs as best as you can. I take my oxygen off while in the pool–sometimes the exertion
is too much for me, and I have to stop and get some oxygen. Also, there is one excercise I cannot do–it is constant up and down squats in the shallower water–I have syncope from the CIDP, and it gets me way to dizzy doing that. Then, after you take your shower, they have delicious coffee and snacks in the main lobby. We grab a cup of coffee, and go out and sit in the gardens, while waiting for our ride home.
But, I enjoy this tremendously. And it is of great benefit for my body.
And I think it would be of great benefit to those of you also in a wheelchair, or with a walker or cane or AFO’s. See if your neuro would request it.
AnonymousAugust 3, 2009 at 7:32 pm
Ken, You have A Great Dr!!!!
I’m glad you are able to do at, thats good news!
I use to do at, until it got too expensive and all my sessions were used up. The place I went to didn’t have the proper dx soo when it caught up to me, I had no choice but to stop. Now I have my own pool(except this year) that we put up, I did all sorts of therapy moves with my kids at my sides if I needed them. I use a ski jacket for bouyance and in case I get over tired. Aqua therapy is really beneficial for nerve and muscle problems. One good thing about my having messed up sensory nerves, I can’t feel if the water is cold like my kids complain it is:D
Will you clone your Dr for others, Ken??!!
AnonymousAugust 3, 2009 at 9:17 pm
My 20 year old son, Ryan, does aqua therapy or I should say did, he currently is taking a break while he is getting plasma pheresis since he has a perma-cath in. He can’t get it wet. but once he is done and it comes out he will go back to it. he loves it he says it makes him feel free because he can do things in the water he can’t on land, like walk. (he’s is now in a wheelchair).
Ken if you don’t mind me asking, how long have you had CIDP? and how did it get so bad that you are dying from it? My son just got sick in Oct 2008 and was dx in dec 2008 he has a very aggressive form of CIDP and so far IVIG hasn’t worked so we are doing PE. He has been steadily going downhill and ended up in a wheel chair in April. We are praying PE will work.
He has been reading your posts and wants to know more about your situation. He didn’t think he could die from this disease. I guess we knew you could but had not heard anyone say they were at the end or getting close to the end. its very scarey.
With that said I am glad you are enjoying the aqua therapy and tha tyou have a doctor who takes such good care of you.
We used to live in Ocenside, my husband was a marine and stantioned at Camp Pendleton, Ryan was born in Fallbrook. We loved it there the weather is the best and I miss Alberto’s (the carne asada’s are great!!) or used to be. We were stationed there for about 8 years. We went to the beach daily. I miss it.
take care of yourself
Rhonda (Ryan’s mom)
AnonymousAugust 3, 2009 at 9:30 pm
Ken, the experience of being able to move around is great, isn’t it. I had aqua therapy for a while where I learned the exercises. Later I found a low-impact water aerobics class at a more convenient location using a noodle as floating device and my wife assisting me. We sold our house recently and went on a 3 months road trip. We are right now in Oklahoma where we found a similar class at the YMCA. It’s not perfect for me but I am keeping my legs from atrophying.
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