Tag Archives: exercise

Very Busy Week

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We had quite a week this week. With two Physical Therapy appointments, a Neurology appointment, a Podiatrist appointment, and a Hygienist appointment at the dentist, we’ve been very busy. And I’m really worn out. I’ll be sure to not let the appointments end up like that again.

We go to the dentist regularly, but I’ve always had trouble keeping my mouth open wide all that time. Now I understand why, as my jaw muscles simply fatigue so much that it’s very painful. And that has set my neck into spasms in the past. I sure didn’t want that to happen right now, as painful as my neck has become.

I found out a long time ago that I could deal with any lengthy dental work better if I asked for a bite block. That wedges my mouth open without me having keep it open myself. So this time I asked for the bite block when I got my teeth cleaned, and it helped a lot.

The Hygienist said my gums were bleeding more than usual. But that didn’t surprise me, since I’m now on a rather large dose of Coenzyme Q10. It acts like Warfarin, a blood thinner. So I guess the next time I have work done, I’ll need to stop the CoQ10 ahead of time.

The Physical Therapist is spending most of my time there trying to relax my neck, shoulder, and back muscles with moist heat and the TENS unit, as well as some wonderful massages and some neck traction. As far as “exercise” I spend time in between the heat and massage sessions just “sitting”. That doesn’t sound like exercise to you I’m sure. But for me to sit unsupported with less pain in a regular chair without the neck brace is really exercise, because my neck muscles have to hold up my head all on their own. It was easier to do today than last time. So the little home exercises he gave me to do, plus what he’s doing at therapy are already helping a little.

He set my TENS unit for my current needs and gave me a diagram of where my hubby will need to put the electrode pads. Hopefully that will mean I can use the TENS unit more and depend on the muscle relaxer and pain meds less.

So I continue to do what I can to improve my situation as much as possible.

I Have Mitochondrial Myopathy

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Diagnosis!

I finally got the results of the muscle biopsy I had back on Dec. 8, 2011! The Neuromuscular Specialist from UAB told us that I had a significant number of ragged red fibers in my muscle tissue, with a diagnosis of Mitochondrial Myopathy. He had suspected that, based on the level of muscle weakness I have, plus my complete medical history and family history.

The muscle biopsy site is now healed, with a good size cavity in my upper arm. I had no idea he would take such a large section of muscle tissue out. But this test is the only way to know for sure if I had MITO or not. It’s a good thing I don’t wear sleeveless outfits, as it’s really quite ugly.

Mitochondrial Myopathy

Mitochondrial Myopathy is classified as a Rare Disease by the National Institute of Health, affecting about 1 in 5,000 people. The Mitochondria are found in all human cells except for mature red blood cells. They are the engines that provide energy to the cells to function properly. When they are defective in some way the cells cannot properly use the food fuel to provide that energy needed for normal cell activity.

Exactly how this disease affects a person depends on which type of cells are most significantly affected by mutated Mitochondrial DNA. I was born with this disease, and the doctor says the mutations have been building up in my body my whole life. Now I have accumulated a significant number of muscular tissue cells with defective Mitochondria. So my symptoms have finally progressed to a point that it was possible to make an accurate diagnosis, confirmed by the muscle biopsy.

Adult onset MITO is not a life threatening disease. We are extremely thankful for that. It certainly does affect my quality of life, however. The specialist does not think I will ever end up in a wheelchair, which is wonderful news. There is no cure and no real treatment, however. That’s the bad news.

No Treatment?

There are some vitamins and cofactors I can try taking. But I’ll basically have to experiment on myself to see which ones, if any, will possibly give me more energy. He suggested I try Coenzyme-Q10, so I started taking it last night. Antioxidants may also be helpful. I had stopped taking all but the most essential meds and supplements early in 2011. That’s when my liver enzymes were first elevated and the weakness became pronounced. Now that we know what I have, I plan to start taking Turmeric, Vitamin E, Omega 3, and Lutein again, as well as the CoQ10. I already eat a diet rich in green leafy vegetables, nuts, and fruits. We consciously eat high quality proteins and limited complex carbohydrates. These are all recommended for Diabetics and people with neurological disorders.

Mitochondrial Myopathy Plan of Action

When I see my own Neurologist next time I’ll probably ask for a prescription for Physical Therapy again. They can help me build up a safe exercise routine based on this diagnosis. In the mean time I’ll try to increase my activity level VERY gradually.

I’ve joined the United Mitochondrial Disease Foundation, MitoAction, and the Muscular Dystrophy Association. And I’m studying all the information on this disease they provide.

So I feel like I’m developing a plan of action. And I have hope that I will be able to slow the progression of this disease with supplements and good nutrition. I’m thankful to God for our close proximity to such a world renowned research hospital as UAB and for the specialists there. Waiting so long to get these test results has been extremely hard on both of us. But now we have an enemy with a name. And we can deal with my Mitochondrial Myopathy emotionally and physically.

Trying to Get Comfortable

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I’m still having a lot of trouble with my weak neck muscles. I’ve read that the human head weighs 10 pounds, and I believe it! So we bought a new soft neck wrap-around brace that’s fairly comfortable, because there is an adjustment under the chin to make it smaller there. That keeps me from feeling like I’m choking, at least. My Neuro cautioned me not to use it too much, though, because it would just make my neck muscles that much weaker if I did.

So I’m mostly using it in the car and at church. I need it at church, because I don’t get any support from the chair in Sunday School. We’re meeting in our Fellowship Hall for the next few months while our sanctuary is being renovated, so they were kind enough to move a high back upholstered chair from the vestibule downstairs for me. That did help this last Sunday, but I’m still awfully sore by the afternoon. Sitting up to eat wears me out by the end of the meal.

At home I have a Tempurpedic type U shaped cushion I use on the sofa that gives me some support without doing all the work for me, and it helps a lot. We still try to get out of the house a couple of days during the week so I can walk for a while. I’m extremely slow, usually holding onto a shopping cart for help, but at least I’m getting some exercise that way.

My muscle biopsy is supposed to be Dec. 8, but I still haven’t received the official paperwork about it in the mail. So I’m just in a waiting game for now.

I continue to run Google searches occasionally, trying to find out more about the various types of Myopathy. I was very interested to find out there IS something called Steroid Myopathy! I’ve been telling every doctor I’ve seen that all this weakness started when I was pumped full of steroids after I developed Angioedema from a drug reaction. Who knows… I may turn out to be right!

I’ve also found that there are all kinds of Movement Disorder problems caused or aggravated by Statin drugs. Since Lipitor became more easily available today, and Statins are cholesterol lowering drugs, this is worrisome to me. I stopped taking my cholesterol meds when my liver enzymes went crazy, but there are an awful lot of people who take these drugs. We hear all these side effect warnings so much that I think most people’s brains just glaze over and ignore the warnings.

We had a wonderful Thanksgiving, and I do have a lot to be thankful for. Even though they drive me crazy with their slowness, I’m extremely thankful that we live close to a world renowned teaching hospital at UAB, so I can see their Super Specialists when I need them. And I’m very thankful I have a good Neurologist and a General Practitioner who take the time to listen to me and seem genuinely concerned about helping me get better.

I’m thankful for a supportive family who put up with me, as I know I’m not very easy to live with. It seems like everything frustrates me nowadays. So I’m irritable and easily upset. My poor hubby earns another star in his crown every day!

Seeing Neuro This Week

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I am still very weak, with little energy for standing or walking. I’ve tried to gradually increase my exercise level, hoping to build up some strength, but so far it’s not making any difference. I have been off the Lamotrigine for almost 2 weeks now, so it’s a matter of wait and see what the Neuro thinks when I go back to see him this week. At least I’m not jerking a lot. I’m very thankful for that.

As part of my physical therapy and our weekly outing we call our Date Day, we decided to go to a huge yard sale with hundreds of booths. Knowing my stamina level, I used the walker with the seat, which was definitely needed. It took us about an hour to walk through the whole thing, with a few stops to look at interesting items. But we didn’t find anything we wanted to buy. The seat came in handy, as I knew it would, but I was also glad to have the big swivel wheels. They made the walk easier than the simple kind of wheeled walkers do.

So, I continue to spend most of my time working on efforts to help tornado survivors thru our free Plush Memories Lost Toy Search Service and also a Facebook site called Wedding Dresses for Tornado Victims.

We aren’t physically able to get out and help with the debris removal and other urgent needs of the survivors of the April 27th tornadoes in Alabama, but I can help through the computer.

We have well over 150 Fabulous Finders eagerly awaiting their chance to unite replacement stuffed animals, dolls, and blankies with the children who lost them during the storms. And the Facebook page now has over 50 Wedding Dresses, Bridesmaid’s Dresses, and other wedding related apparel donated, as well as donations of wedding related services, such as invitations, alterations, and flowers.

I’m now trying to find ways to reach out to the pastors of churches that were damaged or destroyed during the tornadoes, hoping to find the brides who will need help with their weddings. And I’ve reached out to several Toy related sites on Facebook, so they know that we can help individual families replace the most precious of lost toys.

So I stay busy, doing what I can, and pray that my Neurologist will be able to find some way to help me get my strength back.

Cutting Lamotrigine Dose Back

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Well, I’ve tried taking an extra Lamotrigine dose in the morning for about a month now, hoping that would take care of the jerk. I seem to invariably start jerking as soon as I get in Sunday School and continue through church. But the extra dose has not stopped them.

I visited our daughter this last weekend and went to church with her. I only jerked a little in Sunday School, but it was a very small class with only a few women in attendance. But, as soon as we got in the large church sanctuary, my shoulder and foot went crazy. So it must be something to do with being in a crowd.

So, if it’s not going to help, there’s no reason to take the extra pill. I cut the extra one out this morning, and I’ll see how I do for the next few weeks. Getting these doses right is like doing a personal Clinical Trial, as I’ve mentioned in the past. You have to try to compare apples to apples and only change one variable at a time. And I’m careful to do that as much as I can.

I have done better with my motivation to exercise, although right now I’m feeling the effects of the Daylight Savings Time time change, so I didn’t feel like exercising yesterday and today. It always takes me a little while to adjust to the different sleep pattern, more so now that I’m older and on meds that I take on a regular schedule than when I was younger and not on meds.

Praying the Depakote Works

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I heard from my Neurologist Wednesday, and he’s trying me on Depakote, instead of the Neurontin. So far I’m not groggy, but I’m still jerking. Hopefully not as bad as I was, though. Today should be the test of it, as it’s had time to get fully into my system now. So, we’ll just wait and see. It does have some possible side effects that aren’t good, such as weight gain, so I’ll have to start weighing regularly again. And watch what I eat, too, as I had been splurging a good bit lately. But I’m not counting Thanksgiving.

It’s strange how they attempt to medicate the symptoms of Essential Myoclonus. Both of my meds, Primidone and Depakote, as well as the Neurontin he took me off of, are anti-seizure meds. But the EEG showed that I’m not having seizures. They really don’t know how these meds work for some people, and for that matter they don’t know what causes EM, either.

We had an enjoyable Date Day yesterday, going to the Galleria and walking around, mostly to see the Christmas decorations. But it’s not like it used to be. There were only token, if any, decorations in the stores, and they didn’t have a Santa in the mall, either. It’s sad to see how “politically correct” everyone’s become, but they sure want our money! But the mall itself was pretty, and the walking was good for me. And we did get some shopping done, but not at the Galleria! Hurray for “dollar stores” (I can remember when they were 10 cent stores)!!

I’ll try to get some more housework done today, and I’m praying that the Depakote works. My walking is still very unsteady, but that may be from lack of enough exercise. Might as well get a clean house while I build a few muscles, eh?

I hope you all had a wonderful Thanksgiving, as we sure did. And I’m thankful that my Neurologist does have some choices for meds to try for me. I pray that he finds the one that stops the jerking.

Thanks be to God for all his unspeakable gifts! He has blessed us in so many ways, particularly that my wonderful hubby is here by my side to help me in any way I need. I don’t know what I would do without him. I love him so much!!

I pray that you keep Christ as the center of your Christmas giving and celebrating, and that you and your family enjoy His Blessings during this holy time of year.

I’m Using a NEW Search Box

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I’ve been very unsatisfied with Blogger’s Search Box for a long time, but hadn’t found anything free that worked any better. I can say with relief that I think I’ve found something that will help you find what you want to read about.

You can now search for Parkinson’s and actually find all my posts concerning this important part of our site, rather than just the more recent ones. You might also be interested in our posts about diabetes, improving our diet and losing weight, exercising, digestive and elimination difficulties, brain fog, or Essential Myoclonus, the Movement Disorder I am currently being treated for. You will find posts dealing with our family’s roles as caregivers, too. Along the way there are all kinds of posts dealing with achieving the best Quality of Life, which is very important to me, and my strong belief that God will see us through whatever we have to face in this life.

In case you have a site that could use a better search box, I’m using http://www.freefind.com/.

Getting “Back to Normal”

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Well, I decided to try to get my life “back to normal”.

1. I’ve rearranged my meds, so I’m only taking them a few times a day, instead of what felt like all day long.

2. I’m no longer pricking my fingers 3 times every day, but only doing it 2 hours after lunch. My glucose readings have been consistently good for before breakfast and after supper for a very long time. Most of my fluctuations have been after lunch, since we don’t always eat the same thing then. This has been very liberating feeling, plus it’s a lot less expensive, too!

3. I’ve finally quit putting my calorie count for each meal into FitDay.com. After faithfully keeping track of every meal for over a year, I was just plain tired of doing it. And, I still seem to be losing a little, as I’m not really expecting to eat any more than I have been eating.

Add them altogether, and I really do feel like I’m back to normal. I’m still not exercising the way I should. They did a piece on the news the other day saying that people who sit for 6 or more hours a day have something like a 40% higher heart attack rate, even if they exercise. So, I’m in big trouble. Have I changed the amount of time I spend at the computer since hearing that? No.

So, I’d say 3 steps forward, and one huge one backward, until I get my duff off the sofa and start moving around more.

My A1c was 5.5!!!

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Whoo Hoo!! I’m CELEBRATING!! My A1c reading was 5.5 yesterday!! Anything below 7 is considered to be extremely good, so I really did well!! This number is in line with what a person who does NOT have diabetes would get.

The A1c reading is a blood test, usually done at the doctor’s office, that gives a good indication of the average blood glucose level for about the last 3 months.

According to Wikipedia:

In the normal 120-day life span of the red blood cell, glucose molecules react with hemoglobin, forming glycated hemoglobin. In individuals with poorly controlled diabetes, the quantities of these glycated hemoglobins are much higher than in healthy people.

Once a hemoglobin molecule is glycated, it remains that way. A buildup of glycated hemoglobin within the red cell therefore reflects the average level of glucose to which the cell has been exposed during its life cycle.

Basically, if I understand that, extra glucose in the blood permanently changes our red blood cells. Since our blood cells live for about 120 days, measuring the percentage of “sugared up” red blood cells is a good way to see what my glucose level has been for the last few months.

I was not as pleased with my weight, though, as I’ve not lost any more weight in some time. I’m having a hard time getting myself in the exercise habit, and I know that’s the problem. I’m controlling what I eat and how much I eat, with occasional splurges, but I’m not burning enough calories. Plus, I need to be exercising more just for good general health. I’ve already seen considerable improvement with my step climbing and walking up and down steep driveways on our Date Days, so I should be motivated to work out even more. This is what I’m going to have to work on mentally, as I have never been a very physically active person.

So, I celebrate the great blood glucose results for the last few months and continue to exhort myself to improve my activity level.

Doing Great!

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I’m really feeling good these days. My stomach is behaving itself, and I’m encouraged by the strength that is returning to my legs. I was able to manage a couple of fairly steep driveways on our yard sale haunts on our Date Day without using the cane. That’s quite a victory for me, as I can’t remember how many years it’s been since that was true.

I’m gradually adding back in all the supplements I was taking before my stomach got ulcerated again, and so far there’s been no stomach problems. That’s a true blessing.

I’m also encouraged by my ability to learn about the new programming language that our new sites are written in. It’s slow going, but I am gradually understanding how the code is working. I’m very proud of that.

I’m still going to sleep most nights at 9:00PM and getting up around 5:00AM, so I’m getting plenty of sleep. I usually only wake up once in the night to make a bathroom trip, so my bladder is behaving, too.

I’m getting closer to my goal of losing 50 pounds by April 1. I may not hit the date exactly, but I’m not going to miss it by much. With the lowered rate, and the care hubby takes with his grocery shopping, my blood glucose numbers have been mostly excellent for some time now. Of course, there’s the occasional high number, but I usually know what I’ve eaten to cause it, and learn accordingly.

All in all, I’d say I’m in the best physical and mental state I’ve been in for years, and I hope it continues.