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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: Podiatrist

It’s Finger … Finger Prinkin’ Time

Day by Day with a Movement Disorder Posted on May 9, 2009 by DBMay 21, 2016  

I’m pretty much in the finger prinkin’ routine now of checking glucose levels, and there have only been a few times lately when the result was outside of my target levels. I had a really stressful day yesterday, but my test results right in the midst of the chaos were good, and I’m pleased with that for sure. You see, not only eating carbohydrates will raise blood glucose levels, but also eating until you’re stuffed, even when it’s healthy foods, and also stress, can make the glucose levels high.

I’m doing a pretty good job of sticking to a fairly low calorie diet. I’m aiming for 1200 calories a day, and I’m close most days. The Metformin, or Glucophage as the brand name is known, is supposed to suppress appetite a little, so that is helping. Another side effect that about half the people on it get is diarrhea. For me, that’s a welcome change from the constipation I normally fight. For now, anyway, I’m getting a nice balance, with little problem eliminating.

I went to the Podiatrist Monday morning and had a toenail removed from one foot and a corn I didn’t even know I had removed from the top of the big toe on the other foot. My toenails are so badly deformed with fungus that I hadn’t even noticed it, but I sure knew when he cut it out!! The toenail had to be taken off, because I had stubbed my toe back a couple of months ago, and it never healed. Turns out, there was an abscess under the nail. With reduced feeling in my feet from the Diabetes, and the possibility of future problems if I’m not careful, I guess I’ve added my Podiatrist to the list of doctors I’ll be seeing on a regular basis.

It’s really gotten comical. This year already I have seen my Neurologist, General Practitioner – several times, Dermatologist, Gynecologist, Podiatrist, Diabetic Specialist, Dentist, had a chest X-ray and Blood Glucose Tolerance Test, and I’m going for Physical Therapy about once a month!!! The only one I haven’t seen is my Gastroenterologist. And hubby?? … the Dentist. Not that he doesn’t need to go, but we’ve been so busy going back and forth to my appointments that I’ve gotten nowhere with trying to get him to make one for a good annual checkup.

I’m still reading everything I can about what I can do to eat properly and hopefully diet my way out of needing the Metformin. My Diabetic Specialist thinks I can go off the medicine if I lose the weight. And now that I’m not ravenously hungry all the time I feel confident that I will get back down to a good weight. I need to lose a total of 50 pounds, and that’s going to take awhile. I’m trying to change habits, rather than going on some weird diet. The only “diet” I have ever tried was Atkins, and I did lose weight on it. But when the cravings and weak feelings hit I gained it all back and then some.

We continue to do well with our plush sales, and that keeps me busy when I’m home, as does the Lost Toys Search Service we run. People thank us for helping them, but it does us good, too, knowing that someone has been touched by us when they needed help.

All in all it’s been a good week, and with no doctor appointments on the calendar for next week, I look forward to a good week next week.

Posted in Type II Diabetes | Tagged appointments, blood glucose, diabetes, diet, elimination difficulties, nutrition, Podiatrist, stress, weight loss | Leave a reply

My Uplifting Valentine’s Presents

Day by Day with a Movement Disorder Posted on February 15, 2007 by DBFebruary 15, 2007 9

This last week has really been a strange one, on several counts. I wouldn’t normally go this long without a post, but I tried to get a little too fancy with my Drive Partitioning software, and couldn’t get the computer to boot at all! It took me several days to figure out how to fix it, and several more to get everything back the way it belonged. Luckily, I’m good about backing up my data, so I didn’t lose any of that.

In between working on the computer, DH and I have had quite a time with Daddy. He’s been getting more and more wobbly, and less and less able to follow our transfer directions. So, we’ve had several episodes of it taking every bit of strength the two of us had to get him from one place to another. The last straw was Monday or Tuesday (I’ve lost track HA!) when we had the usual bowel problem. Thank goodness I had decided to move the commode into the bedroom, instead of trying to take him in the bathroom. By the time that ordeal was finished, he just about finished all three of us before we got him cleaned up and back in his wheelchair. The Hospice nurse came not long after that, and she could tell how exhausted we all were. This time, when I asked for lifting help, she agreed that it was time.

So, what did I get for Valentine’s Day???? A brand spanking new Hoyer Lift!!! Frances, our paid care giver, DH, and I learned how to use it this morning, and we were able to move Daddy from the bed all the way into the living room to his recliner, without any trouble at all. He’s more comfortable, and we’re MUCH happier. And our backs and nerves appreciate it, too!!

I’ve been pleased with how well the Zelepar has been helping me deal with all this physical and emotional strain. I did have a bout of hysterical crying this weekend, though, because Daddy’s foot looked worse to me, and I felt so guilty that I had let it get that way. My head knew I’d done my best, but my emotions sure didn’t. The Podiatrist was here today, and he’s very pleased with how it’s progressing, so that’s a big relief. Hey, that’s another Valentine’s Day present for me!!

And, today, for the first time in years, the pressure sore on Daddy’s bottom is all but healed! Present number THREE!!

I feel like a huge weight has been lifted off my shoulders. For the first time in quite some time, I really think we’re going to be able to keep Daddy out of a Nursing Home. The lift, the gel seat cushion, our Estate Sale sheepskin finds, and the rippling mattress have made all the difference in the world in Daddy’s quality of life. I thank God for his tender mercies.

Posted in Uncategorized | Tagged care giving, decubitus ulcer, difficulty walking, elimination difficulties, exhaustion, God, heel blister, Hospice, Nursing Home, Podiatrist, pressure sore, Quality of Life, respite care, stress, Zelepar | 9 Replies

Downs and Ups with Daddy

Day by Day with a Movement Disorder Posted on February 10, 2007 by DBFebruary 10, 2007 6

A lot has been going on with Daddy this week that has kept us both pretty busy. I called the Podiatrist’s office Monday about his heel, and they said he would come by Wednesday evening. The regular Hospice nurse came and took a look at it and changed the bandages, telling me that the key thing was to keep the blister from breaking open. She promised that we would get the rippling kind of mattress this week, too, which is supposed to help with pressure sores, such as those on his bottom and heel.

Monday night was the worst I’ve had with Daddy. His usual bedtime is 6:30, but he wasn’t sleepy then. That’s not too surprising, since he sleeps so much during the day, but part of his night medicine is a Tylenol PM, so I can’t let him stay up too late after taking that, or it would be dangerous to try to transfer him into bed. So, I put him to bed a little after 7:00PM. He spent the next 5 hours talking wildly about things like when was he going home, who were all those people, where was his bed, where was I going to sleep, and on and on. He would call me to the back every 15 or 20 minutes, and nothing I told him appeased him. When I told him he was already in bed, he would disagree, telling me he was in the car, and wanted to go home. About midnight he finally went to sleep, but the whole craziness started over again off and on every few hours until it was time to get up.

Not surprisingly, he was wobbly all day Tuesday, and I was worn out, too. So, Tuesday, Wednesday, and Thursday night I gave him 2 Tylenol PM! He slept soundly, and his walking was much better during the day. His appetite has even shown signs of improving a little.

His Podiatrist ended up coming out yesterday evening. He immediately set to cutting the whole top of the blister off!! Mind you, Hospice had told me to do everything I could to keep the blister intact. I was SO glad I had called him! He showed me a dark place in the tissue that was already beginning to develop into a deep decubitus ulcer, and said it would not have healed if it were not fixed so it could drain. He also told me to keep it open to the air as much as I could, instead of keeping it all wrapped up.

I think I’ve finally gotten my point across to the Hospice people that I expect preventative care as much as possible. So the rippling air mattress came yesterday!! It has many crosswise sections of air filled tubes that slightly inflate and deflate back and forth from the top to the bottom of the bed and back. For getting in and out of the bed, it can also be set to inflate completely for a firm surface. I think this will actually help, and may even keep him from getting any more sore places on his bottom.

He still has times when he doesn’t know whose house he’s in, but the hallucinations are not as disturbing to him as they were. His strength is returning, and with the improved appetite, he feels more like walking. So, a week that started as the worst yet has prospects of ending as one of the better ones. I’m keeping my fingers crossed!!

Posted in Uncategorized | Tagged care giving, decubitus ulcer, difficulty walking, hallucinations, heel blister, Hospice, nutrition, Podiatrist, pressure sore, Quality of Life, Tylenol PM | 6 Replies

Still Going Strong

Day by Day with a Movement Disorder Posted on November 21, 2006 by DBNovember 21, 2006 4

We took Daddy to the Podiatrist yesterday, and I saw him, too. He sanded down my thick toenails that are so deformed and got rid of some really bad callouses, as well as cutting my healthy nails. My balance has been so off that I’ve not been doing a very good job of cutting the last few nails on each foot. I’m to see him again in three months. My big toenails feel so much better now that they don’t stick up, that I’m going to keep the appointment in three months.

We ate at a buffet, and I managed pretty well, with only some slight nausea afterwards. All in all it was a very good day, as far as my stomach was concerned.

I did get one item ready for eBay yesterday morning, without any trouble, and I managed to do all the necessary blog tasks early. I did get back on the computer when we came home, though, because we had to pack an item to ship, and I had to print out the packing slip and postage label. Instead of turning it off after that, I left it on and did some research on Parkinson’s, particularly trying to find a place in Birmingham where I could take Tai Chi lessons. I may have found one, too. I’ve got to call them today.

I was able to get all my computer work done this morning done, too, with one eBay listing ready to go on tonight, so it looks like I’m beginning to control my computer time. Now if I can just make myself turn it off, instead of fiddling with it the rest of the day!!!

Poor hubby got up this morning with a terrible toothache he’d had all night long, so we went to the dentist, and he ended up having a root canal today. We feel very fortunate that his pain hit today and didn’t wait until the Thanksgiving Holiday made it impossible to get any help.

So we’ve not been home very long, and I’m finishing this up, with the full intention of looking up the phone number of the Tai Chi place and then turning off the computer!

Posted in Uncategorized | Tagged computer addict, OCD, Podiatrist, Tai Chi, toothache | 4 Replies

Continuing to Feel Good

Day by Day with a Movement Disorder Posted on November 20, 2006 by DBNovember 20, 2006 2

I felt better for a Sunday than I have in some time. All the exercise is beginning to pay off, I think. Usually, by the time I’ve cleaned up after Daddy and fixed his cooked Sunday morning breakfast, I’m already tired. Then the long sit through Sunday School and Church just leaves me drained for the day. That didn’t happen yesterday. I had plenty of energy. My body still cramped some in church, but not as bad as usual. I’ve stopped carrying the cane to church, too, so I’m feeling much more normal. Everyone’s still good to ask about me and let me know that they are praying for me, which I really appreciate.

I didn’t do so good a job of staying off the computer yesterday, even though I really did mean to. This is going to be a hard habit to change, and the difficulty of it just convinces me that it has reached the compulsive point. I’ve gone through all my usual daily computer tasks already this morning, and I’ve taken a set of pictures for an eBay listing already, so at least I’m being a little more efficient.

We’re taking Daddy to the Podiatrist today, so that will get me away from the computer for awhile. I’m going to see the Podiatrist, too, this time. I made the appointment several months ago, thinking I would keep it if the diagnosis was Parkinson’s and cancel it if it weren’t. What with the Peripheral Neuropathy, and some very deformed toenails already, it just seemed like a good idea to touch base with him. Daddy sees him every three months, as he’s a diabetic, but I don’t expect to see him but maybe once a year, unless he tells me otherwise.

I’m noticing a gradual weight loss, which suits me just fine. I’ve just about cut out all sweets, and my portion sizes are much smaller than they used to be. I really don’t feel like eating very much at one time any more. I’ve cut out the in between snacks, too, for the most part. And the meal at night is usually very small – sometimes only a banana. I just don’t get hungry at night any more. We eat our big meal at lunch now, and my dear sweet hubby, who does the cooking, makes sure it’s a very nutritious meal. I’m overweight, anyway, which puts extra strain on my legs and balance, so I hope to continue to lose weight gradually for some time.

Posted in Uncategorized | Tagged computer addict, diet, exercise, nutrition, OCD, Podiatrist, prayer, Sunday, weight loss | 2 Replies

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