Keep on Moving Club: July 2018

[Sunshine]

I went surfing today. Two of my buddies provided transportation and help to carry all of my gear and push the wheelchair. The waves are very beautiful. They were clean and about thigh high. It was a really friendly bunch on the water as well.

I caught about six waves and one of them was very satisfying. So nice to be in the ocean on a longboard. I just love gliding across the surface and feeling the water splash all around. I seem to tolerate the exercise a bit more than usual which was very nice to see!

It is wonderful to be out there on the water amongst such fun loving and healthy people. The older ones all have their challenges whether it’s joint problems, cardiac problems, or diabetes etc. Well it is hard to forget ones limitations when pain keeps reporting, there are wonderful life affirming things that certainly provide a delicious distraction.I have learned to pay close attention to any chatting coming from my feet or shins. I get out immediately and rest 10 or 15 minutes until the sensations quit. I think that has helped to avoid muscle spasms.

I did notice that my pop-up was better than it had been. I was able to get to my feet without getting on my knees. I don’t know whether it was the nature of the wave or whether there has actually been improvement in symptoms.

I am going surfing again tomorrow morning unless I cannot recover from today.

[Sunshine]

I woke up at 1 a.m. with ankle spasms pulling my feet sideways. Oof. Took Tizanidine.
By breakfast I was okay. So, with trepidation, I went surfing

It was a repeat of yesterday. I can see my body healing somewhat— my pop up is better, and my balance on the board is better. I was able to take a couple of steps on the board too. I got manywaves , by resting every 10 to 15minites to settle down the muscle tension.

[Sunshine]

Swam 15 minutes, 1/4 mile. I will stop until Thursday to see if it’s aggravating back issues

[stillstANNding]

I hope the swimming is not aggravating your back, Sunshine, as you enjoy it so much and it helps you.

Yesterday I had PT (every Tuesday since mid-May). I took Uber to Spaulding Cambridge. I get off at the main entrance and walk to the back on purpose. It’s a big building but I can use the extra steps.

We always start w a check in on homework. If anything seems too easy she tweaks it to make it harder or involve more muscles. There is one that involves being on my back on the floor (PT platform when I’m there). I put my heels on a 65 cm ball and tighten my butt and abs and lift off the mat in an angled line. This one is to strengthen the core which I dearly need.

After homework check-in, I went on the Total Gym machine. This is not what I am doing but the machine we are using to strengthen legs and abs:

Only registered and activated users can see links., Click Here To Register...

After that, I earned a rest and some water. Then some balance work between balance bars.

Last was 12 minutes on an ergonomic stepper that uses arms and legs. I did 12 minutes (2 more than last week) at a workload of 5 out of 10. Last week was a workload of 4.

I feel very challenged. I feel like my arms and legs are stronger. I am more active in general and have lost an unintentional 7#s.

My friend Ann picked me up and we went to lunch and to see her new apartment. Then she drove me home.

And I did not need ice packs on muscles last night!
ANN

[agate]

Sounds as if you're very fit, ANN. I couldn't lie on my back on the floor, and no PT has ever given me an exercise where I had to do that. Maybe the PTs have taken one look at me and just known that that was beyond me. Core strengthening has always been stressed though.

I don't think I've ever seen a TotalGym machine.Looks like a really good idea.

You're an inspiration--and a reminder that more exercise means easier weight loss.

[Virginia]

Ann, how wonderful that you have done so well with your PT. You are obviously working very hard while there, but also at home. The unintentional weight loss is great if you needed it. Congratulations on doing so well.

[Sunshine]

These are amazing gains Ann :) you are really perseverent and show such grit!

[Sunshine]

Today I swam 21 minutes, 606 Yards, even though my ankle muscle was tightening all morning and saying to me, “I am thinking of crippling you with a spasm”... NoFear!

[Sunshine]

I swam 606 Yards today 20.5 minutes with no stiffening muscles this time. IVIG kicked in yesterday afternoon :)

I have rides to go surfing both Saturday and Sunday:)

[stillstANNding]

I can’t wait to go surfing w you!

[Sunshine]

I went surfing today with my friends in knee to thigh high water. It was loaded with Sargassum seaweed, which makes it kind of slimy and murky. But not enough to weigh down the leashes (as has happened twice in the past).

I have figured out a way to have the wheelchair, which I now call my Robot , earlier. No more waiting around for it in the parking area.

Although I have been feeling better on land, I had trouble on the water quickly. I could feel my shin muscles stretching and my feet muscles twitching soon after paddling out.

I failed on four waves, but nothing dangerous, just cover your head until you know where the board is.

I got two pretty fun rides. One I was amazed that I was able to rise to my feet crouching before standing. I can’t domthat on land. The other was a fast one that was faster than anticipated. Maybe the wave was over knee high.

I spent a lot of time sitting on the robot to tame down the spasticity. But it’s a nice view of surfers and ocean. Breathing in that salt air is a pleasure too...

The current caused me to drift about 50 yards south of where my Robot was stationed on the beach. When I got out due to SPS, I had to walk a long way to the Robot.

Later on I tried a different tactic of paddling to near shore, about hip high water, and then paddling parallel to the shore. That came with its own set of energy draining problems.

I will tell you, that MS and SPS bring challenges, and I sometimes wonder if I am up to it....it’s joyful to be out there, but it brings me up close and personal to all I have lost. And as much as I love being on the board, it’s scary to be away from land with these legs.

I suppose we all have that to some extent.

[Sunshine]

I went surfing again today. The conditions were better, and minimal seaweed too! My legs tolerated the surfing more than yesterday, so I spent more time in the water.

The ocean was a wonderful 83 F, so you can imagine how great it felt to be there. I just love paddling out and getting sprayed by incoming waves! I guess you can say I love everything about surfing!

Today I got to chat a bit with the other woman with MS. She is a smart and sweet person and we get to compare notes. That was an added bonus!

[Virginia]

Very good Sunshine. Glad that lady is still out there trying.

Ann, I kept trying to remember where I had used the machine that you showed a picture of, where you lay down and push your legs against the board at the bottom. I was put on one when I went to PT where my Neuro is located. The first time I remember going pretty well, but then she wanted to up how hard it was and I was unable to do it, so I think she just stopped that one. I was sorry she didn't let me remain at the level I could handle, but she seemed to think that was not enough to bother with.

[Sunshine]

That video Ann posted of the PT machine looks grueling... no way I could do it! I would end up at the ER with spasms... I hope they work you up to it!

Today I felt a bit frisky and increased swim to 22.5 minutes 640 Yards.no worse for the extra minute

[Pegakafarmgirl]

we rode for over a hour tonight,, was nice till the bugs formed possees and swarmed,,,, my horse was so good,,even after my mounting error,,{my leg locked up, and wouldn't bend},, we surveyed river damage,, sad,, but could of been worse