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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: shopping

Busy Day Yesterday & Today

Day by Day with a Movement Disorder Posted on February 10, 2009 by DBMay 24, 2016 2

We were very lucky to find a Walmart that actually had the Acai on the shelf. Since it has become the new diet craze to use Acai with a Colon Cleansing routine it’s been hard to find. I think I can thank Oprah for that. LOL!

Anyway, since we now have a 6 month supply on hand I don’t mind taking 4 gel caps of it a day. I am going back to eating a little something when I take it, though, until I’m sure that it doesn’t irritate my stomach lining.

We were also able to buy 5 bottles of MiraLax at CVS for a considerably reduced cost, which will be 2 1/2 months worth for me. That is actually the most expensive medicine I’m taking now. It was much cheaper for me when it was a prescription, as my insurance was picking up a large part of the bill, but I’m sure there are a lot of people benefiting from it, now that it is OTC.

I had my yearly appointment with the Dermatologist yesterday, which went quite well. It makes me very nervous, and the stress is not good for me. But he found nothing suspicious. He has prescribed Aclovate ointment for my severely dry skin and a few patches of what he called eczema. All I could think of was great … another prescription. But I will fill it and use it sparingly on the worst places. I’m leary of using too much at a time, because it is a steroidal suspension. I have learned to be very cautious about steroid meds since my horrible reaction to Celestone when I was on PD meds.

So, first thing I did today was to do a drug check to see what the side effects and warnings were, and also to check for drug interactions. It came back OK on the drug interactions, and the cautions had to do with thickly applied ointment, particularly if it were bandaged. I won’t be doing that, so I should do just find on it.

We hit three different Thrift Stores while we were using the gas mileage and found quite a few nice lovies to add to our Plush Animals Shoppe catalog. Of course I can’t wiggle my nose and get them online, but I’m making progress slowly to get our inventory online.

I continue to do my morning exercises, and managed to do three sets today, using the 3.5 pound weights for the last set. I also used the trekking poles to walk around the house a few times this morning and stayed on the mini trampoline for 20 minutes. I’m really pleased with my improvement on the exercises, but I am not yet seeing it translate to a more fluid gait. Patience … patience.

We spent some time today trying to get all the business paperwork together in preparation for doing our taxes. That’s one chore I still do, because I am used to the TaxCut software. Hubby’s made tremendous progress this last few months in his use of the computer, but taxes would be a little too much for this year. By next year, if I need to turn it over to him, I feel sure he will be able to do it quite well. Hopefully I can continue to do this, as it’s a good way to keep my mind sharp and also keeps me aware of where I money is going. This last year was the first year of our married lives where hubby took care of all the bills all year long.

Add in a few posts to the Lost Toys Search Service, and it turned into a very productive day. Now today I’m getting ready to take a bunch of photos to start on another page of our Shoppe catalog.

I’m proud of my efforts and increased activity level, and look forward to improved health.

Posted in Quality of Life | Tagged Acai, Aclovate, Dermatologist, drug interaction, exercise, Income tax, Miralax, shopping, steroids | 2 Replies

BIG TIME GOOF – Did Something the Old Me would NEVER have Done

Day by Day with a Movement Disorder Posted on January 29, 2009 by DBMay 24, 2016 2

I did something really stupid. As soon as it was too late I realized just how stupid it was, and tried to call the company to cancel my order. No such luck.

As many years as I have been ignoring online advertising, this ACAI ad pulled me in, and before I knew it I had ordered the free trial offer, paying only for s/h. The “old me” would never have done that. It makes me feel like the gray haired little old lady I said I would never become.

Anyway, I’ve been adding the capsules twice a day to my vitamin regimen for several days now, with no apparent difference in energy (that’s the promise that hooked me). It’s also supposed to help with weight loss, which sounded phony to me anyway. I figure if I just felt more energetic I would exercise more and lose the weight that way.

This was definitely not a good thing to have done, because the original website, as well as the packing slip, give no indication how much they charge if I wanted to continue receiving the acai. I’ve beaten myself up over this, but all I can do is give it a fair trial, and then deal with trying to keep them from automatically charging my credit card with subsequent monthly deliveries. Oh, nothing has been said anywhere by the company about that part, but when I did the research AFTER ordering, I found lots of people complaining about the high powered tactics of this company.

Posted in Quality of Life | Tagged brain fog, exercise, exhaustion, Quality of Life, shopping | 2 Replies

Sunday Shoes Are a Problem

Day by Day with a Movement Disorder Posted on November 26, 2007 by DBNovember 26, 2007 7

I’ve been casually looking for some type of decent looking flat shoe that would give me more support than the ones I’ve been wearing on Sundays. Yesterday convinced me that I must make this a top priority this week. My best pair of decent looking shoes is a Dr. Scholl’s pair that have a Velcro closure across the top. They fit quite snug to begin with, but the longer I wear them, the suede leather begins to relax, and I get less and less support from them. For just church, I can barely manage, but yesterday, due to a funeral home visitation that we attended (that means lots of standing around talking to people), I was in them a good part of the day. By the time we got home, I was so wobbly that I could barely take a step safely, even with the cane. As soon as I got in the house, I changed into my athletic shoes, and you would have thought I was a different person. My gait was immediately more normal.

So, this week I will be buying some kind of walking shoe that I can tolerate for “dress” shoes. I’m thinking a black pair won’t call too much attention to my feet, hopefully. I do wear pant suits to church, so it won’t look quite as bad as it would have with a dress or skirt. I started wearing pants to church when the short short skirt length came in style, and I just never went back to skirts. Too comfy, I guess, or me being lazy?

I tried on some Vegan Earth Shoes last week, thinking that might be a way to get a comfortable shoe that would support me, and not have the hard leather to bother my toes. But that’s not going to work for me. Earth Shoes have what’s called a negative heel. The heel is lower than the toes. Sounds odd, but it’s perfect for PWP, as we tend to lean forward as we walk, and these negative heels counteract that. My problem is that I had to have most of the toe nail root on my big toes killed off with Laser some years ago, due to chronic fungus and ingrown toe nail problems. That means my big toes are basically unprotected. The slant of the Earth Shoes makes the big toes push up against the toe box, and I can’t take that.

I ran into the same problem when I bought my athletic shoes. There are only a few brands that make a big enough toe box for my toes to be comfortable in them. So now, I’ve got to find a dark color walking shoe among the few brands that I can wear comfortably. Just what I wanted to be doing during Christmas Shopping crowds. Hopefully, my fingers can do the walking. I’ll call the athletic shoe stores today that I have bought Asics and Ryka from before, to see if they have dark shoes in my size.

If I’m lucky enough for them to have something I can wear, we’ll go to town today. While we’re out, we’ll probably try to do some of our Stocking Stuffer buying. This is the most fun part of Christmas gift giving for us. Our children get money, and now the grandkids are old enough to want money more than presents, so it’s the stockings that get all of the attention on Christmas. We buy odds and ends all year round, as we see something that fits each one’s personality and tastes. But filling up those big socks takes some creative off the wall stuff, to keep from duplicating what we have bought them in the past. Even our grown children and their spouses would be disappointed if they didn’t have that lumpy stocking to reach into, pulling out one thing at a time, never knowing what sort of gag gift or useful doodad might be at hand.

I will think positively today, and look forward to finding some suitable shoes, plus enjoy shopping for the Stocking Stuffers.

Posted in Uncategorized | Tagged cane, Christmas, difficulty walking, gait, Parkinson's, Quality of Life, shopping, tremors, walking shoes | 7 Replies

The Day After PT – and I’m OK

Day by Day with a Movement Disorder Posted on April 26, 2007 by DBApril 26, 2007 2

I’m thankful to be able to say that today I have not been all stove up the way I was last week. The Physical Therapist cut back on the severity and number of repetitions this week, so I’m only mildly sore today. I did make a point of asking her if she thought I should be asking the doctor for a blue parking sticker, and she agreed that I should. I won’t need it all the time, but for some places, like the Galleria, which is a huge multi-story mall, I’ll definitely be taking the walker, and I’ll need to be near the door.

We ate at an old Krystal’s yesterday, and I guess that’s the first time we’ve been in one in over 20 years! Luckily, I was having a good day, because the bathroom doors were not much over 20 inches wide! The sink was not much bigger than the size of a sheet of paper! It really looked like what I would imagine an airplane bathroom might look like, and definitely reminds me of the bathrooms on trains as I remember them from my childhood. So, when we got home, I found the Krystal website and complained. I had an answer from the Birmingham District Supervisor by this afternoon. It was pretty much a form letter, but it did have his phone number, etc., so I figured I’d call in a month or so and see if anything is going to be done to make those bathrooms handicap accessible.

We’ve been consciously advocating for better handicap facilities in businesses we go to for years now, never thinking that someday one of us would be needing them. Now, I’m super conscious, and very glad that I’ve been doing my part to make managers aware of what needed to be done.

Posted in Uncategorized | Tagged difficulty walking, handicap accessible, knee, Physical Therapy, Quality of Life, shopping, walker, wheelchair | 2 Replies

I’ve Lost Christmas!

Day by Day with a Movement Disorder Posted on December 21, 2006 by DBDecember 21, 2006 10

Ya know how sometimes it’s too warm when you should be Christmas shopping, and it’s just hard to get in the mood? Well, something like that has happened to me this year. First, we have had shirt sleeve weather, which doesn’t help the situation any, but that’s not really the problem. It just doesn’t feel like Christmas to me this year.

We’re not going to see either of our daughters or their families this weekend. We didn’t decorate our house, because we haven’t been there enough to do it, nor to see it if we had. We put a tiny tree up in Daddy’s living room, but that’s it. Our only Christmas shopping was over the internet, so we haven’t been in any of the crowds, nor had the fun of looking for all the little stocking stuffer unique oddities that our grown kids and grandkids look forward to. I’ve even missed all the Christmas programs at church.

Oh, we’ve had the songs on the radio, but they start that way too early, so it loses its effect. My Sunday School Class did come by here on the way to their Christmas party and sing Christmas carols to Daddy. That was about as close to feeling like it really was Christmas as I have felt. In the vacuum of taking care of Daddy and trying to take care of myself, it just doesn’t feel magical this year. And that’s very depressing. There, I’ve said it out loud. Yes, I am depressed this Christmas, a feeling I have never experienced before on such a joyous holiday.

I never meant, when I started this blog, for it to turn into a place to wallow in self pity, but it sure seems more and more that’s all I’m doing. I guess I could make excuses and call it therapeutic LOL. All I wanted to do was keep a running record of what it was like from day to day, for my own sake, and possibly to benefit someone else going through similar experiences with Parkinson’s.

I was also hoping that by posting regularly, my keywords would attract other PWP through the Search Engines, and I could enjoy some conversations with other people going through the same things I am. That hasn’t happened, either. Maybe it will in time, but right now the Page Rank of this blog is still zero. It’s hard to move up through the Google ranks, and it takes time and patience.

So we take one day at a time, each one feeling pretty much like the day before, expecting the next to feel pretty much like today. It’s a care giving rut that leaves no end in sight, because only God knows the outcome of all this. All we can do is our best from moment to moment.

Posted in Uncategorized | Tagged care giving, Christmas, depression, family, God, Google, Love, Page Rank, Parkinson's, PWP, Search Engines, shopping, stomach | 10 Replies

I Shopped at Wal-Mart Today!

Day by Day with a Movement Disorder Posted on September 14, 2006 by DBSeptember 14, 2006  

I’m very pleased with myself today. I used my newfangled four-wheeled walker and was able to walk around for over 30 minutes without wearing totally out! I found a pair of shoes for Sunday that should give me more support than the ones I’ve been wearing, so I had to find a cart no one was using, in order to get back to checkout in the front of the store. I see why people put baskets on walkers now. Anyway, I put the walker in the cart and pushed it all up front. It’s nowhere near as easy to walk holding onto a cart as it is to walk using the walker for support.

I used to do Tai Chi every morning before DH got up. I learned a short form that wasn’t too fancy, but it was a good beginner workout. I’ve tried a couple of times, since my legs have been acting so weird, to see if I could still do any of the movements. It was pitiful. I couldn’t even get started. So I tried again this morning. I still can’t do it correctly, but if I slide my foot, instead of picking it up, I can go through a few of the first few positions. It’s better than nothing, and I’ll be trying it again in a few days.

Posted in Uncategorized | Tagged exercise, shopping, walker | Leave a reply

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