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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 shoes

I’ve Been Busy, Busy, Busy!!!

Day by Day with a Movement Disorder Posted on December 6, 2007 by DBDecember 6, 2007  

I’ve been so busy I hadn’t even realized how long it had been since I posted here. This is our busy time of year for selling on eBay, so I’ve been spending a lot of time taking pictures, writing descriptions, and packing items to ship. Hubby helps a lot with the packing, and he goes to the PO with them, but the photography and anything computer related is up to me.

I also have been very busy on the Plush Memories blog, because so many people have written wanting help finding their child’s lost lovey. It feels so good to actually help someone, and I have had some successes lately. But right now, I have something like 70 or so requests that I haven’t posted yet. Every time I open my email, there are a few more requests. It’s almost like being Santa, getting all the letters. But I’m not magic, and there are only so many hours in the day that I can give to it.

I am still sleeping a good 7 to 8 hours a night now. My alarm watch is waking me up at 5:00AM most mornings now. That’s made a huge difference in how much energy I have, and I’m not even dropping off to sleep in the car like I had been. I haven’t had the nerve to drive again, though. I have mentioned it to hubby, but he just doesn’t answer me. Not so sure he thinks it’s a good idea.

The elimination problems have improved slowly, and the Bentyl, prune juice, extra Metamucil, and the Glycolax are working. I bought a couple of books about IBS, and I’m trying to change some more of my eating habits, too. I had already made some huge changes over the last few years, thanks to the GERD. But now, my diet is even more restricted than ever. I eat the forbidden foods from time to time, like pizza, but I do it knowing that I can expect to have consequences. And I give in to the chocolate craving every once in awhile, as it’s the best cure for being upset that I have ever found. Yes, I am addicted to chocolate!!

Wearing the Skechers shoes helped last Sunday, and I was not anywhere near as unstable in them as I have been in my regular Sunday shoes. They’re not the kind of shoes anyone would normally wear with dress up clothes, but they are unobtrusive.

I’m to have a stand up MRI soon for my neck, as the pain and stiffness have not gone away at all. I’m waiting right now for my insurance to approve the test. The muscle relaxer and anti-inflammatory have not made a dent in my neck situation. The X-rays show the degenerated disks, and my Orthopedist knows about the problem I had with the Celestone. He said I may have to go off the Zelepar long enough to have the epidural in my cervical vertebrae. He said I would need to talk to the Anesthetist and work that out with him. Sounds fine to me!!!! If the epidural doesn’t work, the only thing left would be some form of surgery, and that I will avoid as long as possible.

Hubby’s sciatic nerve problem has flared up again, so he doesn’t feel like going to the track to walk. So I’ve been getting most of my exercise by working in the yard. The Lasagna Compost is still growing, one pile of wood chips, fertilizer, kitchen scraps, and dirt at a time. It sure is tempting to turn the pile to see if it’s working, but I have resisted the urge so far. I work in the yard several days a week for over an hour, so that’s good.

So, I think I have more positives going on than negatives, and that means today is a good day!!!!

Posted in Uncategorized | Tagged Bentyl, Degenerative Disk Disease, diet, difficulty walking, drug interaction, eBay, elimination difficulties, GERD, insomnia, muscle spasms, Orthopedist, pain, Quality of Life, walking shoes | Leave a reply

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

All’s Well with My World!! Glory to God!!

Day by Day with a Movement Disorder Posted on November 4, 2006 by DBNovember 4, 2006 9

I went to the Neurologist Thursday morning, and reported to him about the Endoscopy and Monday’s visit to the Gastroenterologist. I told him about the Zelnorm, and how it is definitely helping. I also told him about the hair loss, and he said if it continues he’ll try to help with it on my next visit. He agreed that it was time to take me off the Sinemet YAY!, and go on just the Requip, which is what I was hoping he would do. So I don’t see him again for three whole months! I feel like a free woman!!! Requip is taken with meals, so no more of this hour ahead stuff, and it doesn’t have any dietary restrictions, either, so I can eat what I want with it. My gastro doctor has put enough restrictions on my diet as it is, so I’m glad to not have more added to those from the PD meds.

Thursday was my DH’s birthday, but I couldn’t get him to spend any money on himself at all. I was hoping there would be a movie he wanted to see, but no such luck. Then I tried to get him to buy a book or a CD, but he wouldn’t do that, either. So…. I needed to get a pair of walking shoes, fitted by a knowledgeable salesperson, something I had researched on the Internet as being good for Parkinson’s patients, so we ended up spending money on ME LOL. He did let me take him out for a nice lunch, though.

I found out in my research that walking shoes don’t break on the sole in the same place that running shoes do. Since PD folks have problems picking up the foot and putting it down properly, with the roll that everyone else takes for granted, this is important. I was used to wearing running shoes, and I could tell the difference immediately. It really felt odd, and will take some getting used to. It changed my whole sense of balance at first, I was so used to the old shoes.

So this is a post I’ve been looking forward to making. I’m feeling good about my medicines, my stomach is improving, and I’m at a point where I feel like I have a handle on the Parkinson’s for now. Now I just want to proceed with life as normally as possible for as long as possible, enjoying every minute of it, knowing that the time will come when things will change. I feel so fortunate that this disease is progressing slowly for me. This warning time gives me the opportunity to glory in just being alive, and I thank God for every minute of it.

Posted in Uncategorized | Tagged balance, God, hair loss, Neurologist, Requip, walking shoes, Zelnorm | 9 Replies

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