Progress Report!

Here is a new thing I am trying. I forget what to work on when I’m on the ice. I have an app that shows descriptions of the skills in the Adult Basic Series. I transferred those to a google spreadsheet which is more accessible to me. So, I’ll keep a running list of my progress there. I’m not quite sure how it will work to share the document, so experimenting here. But at least I have it for myself now!

Progress Report

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Peaking Around a Corner?

…As in, maybe turning a corner a little.

I started this project about six weeks ago and have been skating 7 times. All this time, the skating itself has been kind of boring because it was just lousy and pain-ridden forward skating around and around and around. Not too exciting. Most of this time has been dealing with foot pain, equipment problems, fatigue, and getting used to rink dimensions and ¬†sensory overload and how to manage it, and finding good ice time. As far as the skating itself, I haven’t seen any improvements.

But I’m starting to. My boots are still not foot paradise, but they improve greatly after just about ten minutes or less. I am no longer skating with an hour of severe foot pain followed by days of mild to moderate lingering pain. I have sore muscles in my legs, but that pain is not that big of deal to me and I know it will improve.

I had a long way to go to get my skills back. But I can see improvements in my basic stroking and have been able to work on Basic Skills stuff. I can feel my right side getting stronger.

Ice time is ok for now. The Lloyd Ladies (and men) are all pleasant and I have enjoyed meeting them. I had my first group lesson with them yesterday and there are some minor kinks to work out with being able to follow along with the lesson, but it was good to be in it. Lessons help push you further than sometimes you would have pushed yourself that day. I need to arrange for someone to tell me when it starts and when its “my turn” because I can’t tell otherwise. I also had too many helpers. They were all well-meaning, but if 4 people are surrounding me trying to tell me what is going on, I have no chance of hearing/seeing ANYTHING. I need just one person so I’m going to have to kindly manage some of my overabundance of help!

I long for fast-paced big ice, but I don’t need it yet. If/When I do, I will relook at my rink options or add to the Lloyd Ladies. But for now, Lloyd Ladies are fine. I’m a bit concerned about Lloyd Ice, though. Now that I’ve walked through the mall with my son, Naim, I realized that the mall is not dead, but is “sick.” Its got really only one anchor store, which is Macy’s, and Macy’s is struggling. Several vacant spaces exist throughout the mall. And now with the other rink closing soon, what will become of it. Seriously, they should take one of the big vacant stores and make two big standard sheets of ice on it. And then try to get a fitness club in there as well. Think of all the people that would bring in to the stores! But, for now, I’m hoping Lloyd holds out for me and the others who skate there and/or someone can work out a new rink or two in this town. Calling Tonya Harding! Did your movie make you any money, Tonya? Can you invest it into a new rink? I’ll come! I’ll bring my friends!

But I digress…

My biggest challenge so far has been scheduling and fatigue issues. Even there, I see a little bit of improvement, although its not worked out, yet. I read up on exercise fatigue, kidney disease and fatigue, etc. I realized that I developed a low RBC and had to take epoetin shots the last time I was skating heavily. But it also was a time when I had kidney stones and went through 4 kidney surgeries in a matter of 8 months, so that was probably the more likely cause. (And I don’t remember falling asleep immediately after skating back then, just overwhelming tiredness all the time, but I skated when I could still.) So, I get blood work about every 2 to 3 months and I will check my RBC next time, but I’m leaning more towards this being exercise fatigue. I’m thinking of dropping pilates for the time being, but then just yesterday after I skated, I was tired and not fully functional, but I could get a few tasks done in the afternoon and I did not fall asleep, so maybe there is improvement already. I tried to drink more water during skating, have a small snack immediately after, and some of the other tips that they say can help exercise fatigue, but its not like I’m brand new to exercise, either. So its still a bit up in the air, as is scheduling to both get everything else done and to not overdo it to the point of being dysfunctional. It might kind of be a day-by-day or week-by-week thing for awhile.

I sometimes have tiredness and “oh, god, do I really want to get my ass out of here to skate?” feelings in the morning, but once I get there, I’m fine. I no longer feel anxious about the skating itself, although I’ve struggled with guilt and anxiety over sleeping too much, being gone too much, not getting as much done at home. But hopefully I can get rid of that. There is something nostalgic about walking through Holiday Park and a mall by myself with my dog and skating bag to the rink. It brings back so many memories of my single, child-free days. I am getting kind of protective over that time, and it does help with my overall day-to-day anxiety and enjoyment of life. I’d be on the ice every day if I could, but for now, I am just happy to start feeling the skating high that comes with a level of comfort and confidence on the ice.

High Tech DeafBlind Ice Skating/Sports?

Here is my brain fart for today.

So, I notice that I am very slow on the ice. Part of this is because I suck right now. But part of this is the level of concentration it takes for me to be aware of where I am and what goes on around me. My brain can only process so much of the veiled visual, audio and tactile cues that I get in order to keep oriented. This has gotten a lot worse than in the past. And though I know that my speed could get better after I get “back to it” and get some of my basic skills back, I question if it will because of the speed I need to go to keep orienting.

My husband and I run an adaptive tech business. He is the tech guru, I provide administrative support. So often when I come up with a challenge like this, I think to myself, “ok, how could tech help?” And then I go to my in-house tech guru and see what he has to say.

Micronavigation is all the rage in tech right now in blindness adaptive tech. Its an emerging industry and it has not reached its full potential yet. But it may be promising for the future. There has been tech that has helped blind people by leaps and bounds when dealing with more outdoor “macro” travel. GPS on iphones and mapping apps have helped tremendously. One of the most widely used ones is called BlindSquare. This app takes crowd sourced navigation information and puts it in your ear. For example, you can be walking down the street and it will say “SW 5th Avenue, 20 ft ahead.” or “Jamba Juice at 3:00.” It will also give you turn by turn directions.We have used it to navigate around Chicago’s Botanical Gardens and even to find our way back to our son’s sand castle after a beach walk by setting a “beacon” at that point.

I am at a disadvantage with blind square because I can’t hear it outside. It can work clumsily with a braille display, and this is one of the things I have been bugging the company about. I can still use it, but I have to set it to give me a very low amount of info at once and then stop often for the braille to keep up with it. This is typical for DB people. We usually have to wait for developers to remember we exist, too.

Another option for me is to set up directions in maps and then use an apple watch to give you tactile prompts for when to turn left and right and other information. This has been great for many deaf blind people. I don’t have an apple watch–not at all because I just spent $500 on skates! But someday, I will get one. The tactile cues for deaf blind people and their applications keep getting better and better.

But micro navigation is giving information about the so-called “last 30 feet,” such as the door to the store you want to go into or the evevator or bathrooms in a building. Blindsquare has used a technology called iBeacon to label hotel rooms in a conference or even gates at an airport. Here is a short video that shows how it works:

So, I started thinking about whether this could be useful in a rink setting. ¬†Could I put beacons on the rink to send tactile info to my apple watch to give me location information? And if I got used to this, could I then skate faster? Like, what if there were beacons on the four “corners” of the rink and when I got near them, I would get a different kind of pulse on my watch? It would be another (less distracting) set of orienting information. Hmmmm….

I don’t think the technology is there quite yet. It might be more like nano-micronavigation? (Someone can let me know if it is!) But who knows what could happen in the next few years. And maybe this could work with other sports and rec activities like soccer (on the goals) or basketball or the gates on ski slopes, etc. It would take a lot of goofing around with, but an interesting concept may be coming down our way.

Here we go!

Me at some local competition. I’m on the ice in an arabesque or spiral position.

I have dealt with anxiety with a touch of depression my whole life. For a long time, I took meds. Now I don’t.* This project is my attempt to control my anxiety/depression without meds or counseling.**

I’m almost half a century old, I am Deafblind with some usable vision and hearing, and I have kidney disease. I am a mom of three and work part time with my husband in our own business. We have two guide dogs and three guinea pigs and live in the Pacific Northwest.

I have a good life but my biggest struggle is with “spoon management.” Or the rationing of energy when I have kidney disease. Its a little more challenging for me when I can’t drive because just leaving my house to go anywhere means I have to walk on average over a mile. This is both good and bad. I have to plan for rests and say “no” to a lot of things I would like to do. People think deaf blindness is hard, but my kidney disease is much harder. The sapping of my energy is really my number one impairment. To be honest, deafblindness does make lots of things take a lot more physical and mental energy that they would for others, so its a combination of things, but having a lack of energy is tough for my mental health as well.

Exercise, when carefully managed, is good for kidney disease, and good for mental health. When I just tried to ride the bike or treadmill, I got bored out of my mind. I needed a goal. And when I looked back and some of the happier times of my life, or at least the times when I felt both physically and mentally strongest, I was skating.

I was never anywhere near the level of elite skater (no Yuna Kim or Michele Kwan-like skills for me!) But people think skating and they think the Olympics and that caliber of skater. Just like almost every other sport out there, most of us aren’t elite, but that doesn’t make the sport any less fun to pursue your personal best. There have been some silliness written about me as a Deafblind skater before, and there are definite factors that make being a Deafblind skater a bit of a challenge which will come up, but this blog isn’t so much about that as its about just keeping moving in whatever form it takes.

Due to my kidney disease, my bones are brittle and can break, so I have to be cautious. Therefore, no jumps will be happening, and probably not many spins. . I plan to stick with Moves in the Field, Solo Dance patterns, that sort of thing. But that is getting ahead of myself, first I have to just get back on the ice again. I will start with the Adult level 1-6 Learn to Skate skills. I used to be able to do all of these, so I will not need a coach for now. But this is where I will begin.

When I was a little kid, I first noticed that I could be totally pissed off and feel horrible, then go to the rink and feel great within an hour. No other sport or physical activity has had that affect on me. When I skated as an adult in my 20s, the rink was somewhere where I belonged and people welcomed me, with almost none of the day-to-day weirdness that goes along with people who can’t deal with you as a deaf blind person. I really enjoyed my adult skater friendships. I hope to maybe find that again, but I’m not sure if it is possible due to schedules, etc.

Four women in skating dresses posing after a local competition. I am second from the left.

So, skating as a Deafblind person takes a bit of logistical strategy. No longer am I a single person who lives right across the street from the rink. I used to go there morning and evening several days a week, plus take ballet and pilates and walk a couple of miles to work and back. Now I will have to take a train and bus to the rink, leave my work, husband and kids, and since my vision and hearing are much worse now, I will not be able to do evening or weekend public sessions. The rink that is nearest to me only has a daytime public session on Fridays, so next Friday will be my first opportunity. My son is going with me to help me get the lay of the land, but after a few times, I hope to be able to go solo. I also need to make friends with this rink so they will let me store my guide dog somewhere and let me skate without a bunch of dramatics. And maybe watch out for me a bit. We’ll see how it goes…

Until then, I am working on my stamina with daily exercise. Stamina will be BIG with this project, and since I can’t skate but once a week, off ice work is a big part of this, too. But working towards a goal of getting my skating legs back will certainly help in the motivation department.

So, here we go!!!

*I am not a psychiatrist so I cannot say whether SSRIs and other psych meds are all they are cracked up to be, miracles, or over or under utilized. For me, they wreaked havoc on my kidneys, made me throw up, etc. So they were not for me. If they work for you–wonderful. This is not a judgement against or for people taking psych meds. Do what works for you.

**I did CBT counseling in my 20s that was very helpful. It taught me a lot of things I never learned growing up. But now, it just feels like too much trouble and there is nothing really new they can do for me. Again, that is what I’ve decided is best for me. Do what works for you.

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