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Daily Journal with Mitochondrial Myopathy

Day by Day with a Movement Disorder

My Journey with a Mitochondrial Disease - "But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint." Isaiah 40:31 KJV

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Diagnosis in 2006 - Parkinson's Disease and Peripheral Neuropathy, then in 2007 - Essential Myoclonus. Finally in 2011, after a muscle biopsy, I was diagnosed with Mitochondrial Myopathy as well as Peripheral Neuropathy.

Share my journey - coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, uncertain diagnoses and no telling what else!

Tag Archives: walking track

It’s Supposed to Take 21 Days to Make a Habit …

Day by Day with a Movement Disorder Posted on March 3, 2009 by DBMay 24, 2016 2

I’ve been working really hard to get some habits going in my life that I can do without having to think about them so much. I’m doing my morning breakfast, dish washing, tooth brushing and mouth wash gurgling, and putting lotion on my hands in exactly the same order every day. That may sound like a dumb thing for a 65 year old to be practicing, but it’s something I have to think about each day, or I forget to do half of it. I’m not ready to make a list and post it, so I’m hoping by doing them in the same order each day I can turn the whole routine into a habit.

I’ve been very faithful to do the exercise sets that the Physical Therapist planned out for me. Now for that, I did make a list, and I check each time to see what the next step is. No, I can’t remember them all if I leave it up to memory, so the list is necessary. I’m not going to bother to try to memorize it anyway, because he will be changing it near the end of March.

I’m still trying to find a good substitute for the 10 minutes I’m supposed to spend on the exercise bike. On pretty days I can walk around the house a few extra times and make up for it. On rainy or raw cold days (hey, we had SNOW on Sunday!) I’ve been walking around inside the house, but I doubt if I am doing as much inside as I would outside.

Our driveway goes from the front around to the side of the house, where a sidewalk connects to the patio along the whole back side of the house. And there’s a sidewalk from there all the way back around to the front of the house. So I have a ready made “track” that I can walk on, without having to worry about traffic. Plus, the slope from front to back of our lot gives me a chance to walk up and down hill, too.

I’m wearing a pedometer and recording my number of steps each day. I figure I’ll average them together from this week and try to beat that average from now on.

My mood has been good, and I’m feeling confident that I can improve my mobility and stamina. I still spend the majority of my day working at the computer, trying to stay caught up with our Lost Toys Search Service and taking care of our online sales. I’ve had to slack off on adding to our catalog momentarily, as I got behind on requests for help when we went to Huntsville a couple of weeks ago. It’s kind of a two steps forward and one step back kind of thing, as I get new requests constantly, while I am trying to take care of the old requests. But it feels so good to be able to help people when they are so miserable that the Toy Search has a lot to do with my being upbeat. I wouldn’t want to stop it, no matter how much of my time it takes. It’s certainly a better use of my time than watching TV!!

Posted in Quality of Life | Tagged brain fog, exercise, Lost Toys Search Service, Physical Therapy, Quality of Life, walking track | 2 Replies

Cpap Adventure Continues

Day by Day with a Movement Disorder Posted on September 4, 2007 by DBSeptember 4, 2007 6

I’ve been on the new full face mask for a week now, with one extremely good night’s sleep, night before last. I’ve been awake since 12:30AM today, though. I woke up with air just jetting out from under the bottom of the mask, where the silicon soft part had come out of the plastic part of the mask. By the time I woke up enough to realize what the problem was, and then fixed it, I was wide awake. I’m also continuing to have problems with my skin. I’m ready to try the all over the face kind. That’s not supposed to irritate skin, as it fits at the hairline and all around the face completely. This is the last style there is, basically, so I’m about to run out of options, other than not use it at all. That 8 hours of sleep on Sunday night gave me such high hopes, too.

I continue to struggle with terrible gas, and I’ll be calling my Gastro’s nurse today to report in. Stopping the Amitiza just didn’t help any. Nothing has really changed as far as feeling like something is wrong with my elimination process, either.

We walked at the track again yesterday morning, after several days off. This time it was due to DH having some pains, as I think he over did it when we started back walking the other day. Hopefully, he’ll be OK this morning, and we can get our walk in. I also worked in the yard early yesterday morning, putting another pile in the Lasagna Compost area and digging around the foundation of our new garage. We need to get a drainage ditch around the front edge, so I’m hoeing just a little bit each day. I’m also trying to sweep off the driveway every day or so, as that is good exercise for my shoulders. It sure does feel funny, though, trying to sweep left handed. But I need to exercise both shoulders, so I do it, funny feeling or not. And boy, am I right sided. I’m pitiful trying to sweep “backwards”. LOL

I’ve been doing more research, trying to see if there is anything I’ve missed about CPAP. I did find that I’m supposed to have the machine below head level, a fact that escaped me somehow. I didn’t keep it on long enough last night to know if that would stop the “rain out”, as it is called. That’s when the humidifier in the machine causes condensation in the tubing, because the air in the room is cooler. I can’t do without the moistened air, so I will need to deal with the condensation. It got so bad one night that it sounded like the thing was gargling!

I was also trying to find out of the machine is aggravating the gas I’m having, and yes, CPAP does often cause that, as many people swallow the air. It’s supposed to be something you grow out of, and can be lessened by using the Ramp Up switch, which starts the pressure lower so you can go to sleep easier. I hadn’t been using it, since going to sleep has never been my problem. But I did use it last night, and will from now on.

For all that I’m discouraged this morning, after so little sleep last night, I am still hopeful that I will adjust to the CPAP. I’m not so optimistic about my digestive system problem, though, and I am still wanting the colonoscopy. My legs and hands continue to be swollen with fluid, too. We’ll see what the doctor has to say today.

Posted in Uncategorized | Tagged bloating, C-PAP, edema, elimination difficulties, exercise, Gastroenterologist, hope, insomnia, Parkinson's, Quality of Life, swallowing, walking track, yard work | 6 Replies

Blue Funk Is Now Fading

Day by Day with a Movement Disorder Posted on July 5, 2007 by DBJuly 5, 2007  

I don’t seem to be quite as depressed as I was a few days ago, thank goodness. The money part of the estate is finally taken care of, so the only thing left to do is sell Daddy’s car and finish emptying the house of all the furniture and stuff that our DD’s don’t want. I say “only” like that’s not a big deal, but there’s a bunch of stuff to get out of our older DD’s way. We did bring Daddy’s car down to our house yesterday, so at least they can move things out to the garage now that are in their way. We didn’t want to do that while all the construction delivery trucks and workers’ vehicles were going in and out of our yard.

We put Thompson’s Water Seal on the garage floor day before yesterday, and it soaked it up like a sponge. We have to wait until tomorrow for it to be cured, but from the looks of it, we’ll have to put another coat on it before we put anything in the garage. Not that we can use it yet, anyway, as only half of it has been roofed. We’re waiting for the other special order to come, since the builder didn’t order enough of the starter strips for this particular type of shingle. It seems this pattern takes two rows, instead of the standard one, so we have half a roof at the moment. LOL

So many delays have happened with this garage that what would have had me in tears a week ago is now just funny. They don’t get paid until we’re satisfied, so it’s to their advantage to not make all these time consuming mistakes. Go figure.

We bought a pair of trekking poles the other day, as an experiment. The one piece ones are supposed to be better, according to all I could find on the Internet. But it made more sense to try out a cheaper set of adjustable ones that both of us could use at different times, until we see if we like it. Using the walking poles is supposed to be a way to protect the knee, ankle, and hip joints, plus give the upper body a complete workout while you walk. And they are recommended as an excellent exercise tool for PWP.

We’re practicing around the house right now. I’m not sure I am going to be able to use the best possible form with them, as it’s kind of confusing. It involves holding them with a strap around your wrist and then letting go of the grip when the pole goes back, as you grip the other pole as you walk. Trying to keep my feet coordinated with the poles, plus remembering what my hands are doing, all at the same time, is very confusing. But I can definitely hold onto both poles all the time and do them OK. I can already tell that they are going to increase the exercise my upper arms and shoulders get. I’ve been walking with one pound weights every other lap now, for some time, in anticipation of trying these poles. I hope that means I’m ready for them, but I’m in no hurry to try to walk very far with them right now. I’ve learned that slow and easy works better for me.

We managed to salvage enough leftover sheathing and scrap 2×4’s to have a good start on finishing off one inside wall of the garage, plus make some shelving, plus there is a good bit of the siding left over that they were going to take to the dump. We kept that, too, in case we ever have storm damage. I’ve been walking around outside the last few days with one of those magnets on a pole, picking up nails. No telling how long it will take for us to find all of them. With the drought we’re having, it’s not as if we need to be worrying about using the lawn mower in that part of the yard for awhile, so we should have it cleaned up before we need to be concerned with cutting the grass safely. As for cars, we’re still not using the new part of the driveway or going near the garage. Tearing up a tire is just not worth it.

We’re making slow headway with our eBay sales, with over 250 items listed now, so I’m hopeful that I can get back to enjoying reading everybody’s blogs soon. I did manage to skim through Ruth’s blog to see how things were going with her since Mick passed away, and I’m sorry to see that she’s had one problem after another, due to the red tape of their national health care system. The more I read what Marion and Ruth have to say about socialized medicine, the surer I become that I pray we never get it in the USA!!

Since I’m writing this at 2 AM I think it’s safe to say the insomnia is still going strong. I went to bed about 9:30PM, but I was wide awake by 12:30. I tried going back to sleep about 3:00, but didn’t succeed, so I’ve been up since 3:30 with 3 hours sleep for the night. Counting the days until I see that sleep specialist!!

Posted in Uncategorized | Tagged depression, exercise, insomnia, national health care, Parkinson's, PWP, remodeling, settling an estate, walking poles, walking track, yard work | Leave a reply

Getting a Sleep Study Done

Day by Day with a Movement Disorder Posted on June 20, 2007 by DBJune 20, 2007  

I went to see my Neurologist yesterday, and he is very pleased with my physical progress. He doesn’t want to change any of my meds, though, until I have had a sleep study. So, I have an appointment in July with a Sleep Disorder specialist. I’m not sure what that kind of doctor is called, but they gave me a book’s worth of forms to fill out about myself that I have to have done for the appointment. I’m surprised they didn’t ask me if I painted my toenails!!

I’ve been doing a little research about this insomnia thing and Parkinson’s, and it’s no wonder that this is bothering me. Something like 88% of PWP complain of insomnia!! Whether it’s the disease or the meds we take, I’m not sure, but that’s a significant symptom to deal with.

I have recently bought two more books that I think are going to be very helpful. One is Parkinson’s – The Art of Moving, by John Argue, and the other is The Book of Exercise and Yoga for Those with Parkinson’s Disease, by Lori Newell, M.A., which shows how to do each exercise from a chair if the PWP requires it. Add the Chi Walking book I’ve mentioned before, by Danny and Catherine Dryer, to that list, and I think any Parkie would find help with improving their body mechanics. I found used copies of the first two on Amazon recently, and I bought the walking book at a local book store. Thanks to Tami for suggesting the Art of Moving book.

DH mentioned last night that the slope of our newly installed home “track” makes it harder for him to get in as many steps as he does on the track at the local park. And I thought it was just me.

We now have extended our driveway around to the side of our house, with a new garage to be built next week, hopefully. But we didn’t stop there. We had them put in a side walk to underneath our deck, and had a patio put in there. There’s only about a five foot pathway between the end of the patio and the beginning of the sidewalk that goes from the deck steps to the front driveway that we need to finish with stepping stones.

That means we essentially have our own personal track now. We get an up and down slope going to and from the back yard, as we have a full daylight basement, with plenty of level walking up front and on the new driveway. Now I can step outside during the day and go around a time or two any time I get stiff or need a break from working on the computer. I’m not supposed to sit still more than about 15 minutes at a time, according to the Art of Moving book, so this is great. I think that’s also why sitting through church bothers me so much. I can’t wiggle enough in the pew to stay comfortable LOL!!

DH is walking between two and three miles each day we go to the track, but he’s not able to do much else in the way of exercising. He had colon cancer several years ago, and the whole incision, from way above the navel all the way down, herniated last year. He has this huge piece of mesh sewn into his abdomen to hold it all together. You can actually see the bulge in his tummy where the muscles are just not able to support his mid section. The doctor cautioned him not to do crunches or anything similar, so it’s hard for him to slim his middle down. He’s pretty much stopped wearing trousers with belts, as they are just not comfortable.

So, I’m glad that my Parkinson’s is giving him the motivation to walk consistently. He’s a night owl, and if it weren’t for getting up to keep me walking, I don’t think he would get up early on his own. And, of course, it’s way too hot to walk much around here unless you go very early. We are usually at the track by 6:00AM, with plenty of other walkers already going around when we get there. On days he doesn’t feel like getting up that early, he’s been walking around our own track as late as 10:00 at night!! So, we’re helping each other to stay motivated, and that’s a good thing.

Posted in Uncategorized | Tagged exercise, insomnia, Neurologist, Parkies, Parkinson's, PWP, Sleep Study, walking track | Leave a reply

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