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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!

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Today My Balance Worked

Day by Day with a Movement Disorder Posted on October 26, 2006 by DBOctober 26, 2006 4

I could tell when I got up this morning that my balance was back to “normal.” This fluctuation in what I can do is something I’m just going to have to get used to, I guess. I did manage to get several descriptions done for eBay, but I didn’t get them on last night, because DH had a called Deacon’s meeting that didn’t get over until about 9:00, so we were late getting home. I don’t like to post items after 8:00, so they’ll go on tonight.

All the Deacon’s wives stayed in the Fellowship Hall, where we had been for Wednesday night Prayer Meeting and Worship, and visited with each other. It’s been a long time since I stayed for one of those informal gatherings, and I really enjoyed it.

It was also the first time I let them see me walk any without the cane. This on and off way it effects me is hard to explain to people, so I’ve been avoiding having to explain by using the cane at church all the time, whether I thought I needed it or not. Now that the med doses are higher, and I’m exercising more, my balance and leg strength are better more days than not. I still need the cane for certain situations, so I carry it everywhere, but I don’t always use it.

My main difficulty continues to be my digestive system. I’m just trying to wait out another week, as that’s when I’m completely off the Sinemet. If all the nausea, gas, cramping, and just generally feeling lousy don’t stop then, I’ll have to change my Gastroenterologist appointment to a sooner date. I’m just telling myself to be patient for now, over and over and over.

Posted in Uncategorized | Tagged balance, cane, Church family, eBay, exercise, Gastroenterologist, GERD, nausea, Sinemet | 4 Replies

Tai Chi Form Was Good Today – Tummy Wasn’t

Day by Day with a Movement Disorder Posted on October 17, 2006 by DBOctober 17, 2006 2

I’ve increased the dosage of the Requip, but I haven’t yet cut the amount of Sinemet, other than going to the half tablets four times a day. It really showed today when I went for my second Tai Chi lesson. I could tell the difference immediately, as I walked around the mat to warm up. Just walking was much easier. Doing the form was much easier, too, and I only had to stop once for a walking break. I was very pleased with my progress.

I’ve not been pleased with my stomach, though. Just drinking some water after we left the gym set my abdomen to cramping. After lunch, which was a particularly bland one, the gas got so bad that I had to take some Gas-X. I was really in a lot of pain way up in my chest. After I took my 4:30 meds, my stomach was very tender.

I’ll be cutting the Sinemet down to just twice a day on Friday, so hopefully my tummy will begin to get better then. If it doesn’t, I’ll have to call the Gastroenterologist again.

Posted in Uncategorized | Tagged exercise, Gastroenterologist, GERD, Requip, Sinemet, Tai Chi | 2 Replies

Results of Endoscopy and Ultrasound

Day by Day with a Movement Disorder Posted on October 11, 2006 by DBOctober 11, 2006 2

Yesterday I had the Endoscopy and Ultrasound to try to determine why I’m having such a terrible time with the acid reflux. I’ve been diagnosed with GERD now for several years, so I generally know what I can and cannot eat. I really thought it was the Sinemet that set off the reflux, but my Gastroenterologist wanted to be sure it wasn’t a lingering infection from the severe colitis I had been plagued with for so long.

Anyway, the tests showed nothing but irritation, not infection, and no sign of gall stones or anything like that, so it was the medicine after all. My own doctor had been called away, and one of his associates, who is not familiar with my case, did the endoscopy. His orders were to take the Parkinson’s meds with meals, which, of course, I’m not supposed to do. He also prescribed Carafate and a week’s worth of probiotics, and to continue the twice a day on Protonix. All this is designed to settle down my tummy and soothe my esophagus.

As for taking the PD meds with meals, I’m not going to do that, but I do eat crackers with them each time, to try to protect my stomach. Hopefully, by the time I’m weaned off the Sinemet and fully titrated onto the Requip, I won’t have the conflict with the meds, anyway.

If I still have problems then, I’ll have to try to get the Neurologist and the Gastroenterologist to talk to each other and decide what’s best for me. I don’t like being the go-between for doctors. They need to discuss this with each other!

I had read that Parkinson’s meds and Parkinson’s itself could cause a person to react differently to anesthesia. Well, there may be some truth to that. I slept until 6:30 PM yesterday evening after we got home from the endoscopy, and then I went back to sleep about 10:00 and slept all night until around 6:30 this morning!! I just about lost yesterday!! I’m fine today, with no ill effects at all.

Posted in Uncategorized | Tagged colitis, endoscopy, Gastroenterologist, GERD, Neurologist, prescriptions, Requip, Sinemet | 2 Replies

Busy Busy Day

Day by Day with a Movement Disorder Posted on October 6, 2006 by DBOctober 6, 2006  

I walked to Daddy’s this morning …. the first time I’ve done that in about six months or so. He lives about a block or two away, I guess, but we don’t have blocks. DH came and got me, so I wouldn’t tire out too much.

We had a full day today, making our usual round of the Estate Sales, looking for the really good bargains. We did find a few goodies, too, and I got a lot of walking in. By lunch time I was pretty well worn out, but it was fun. After lunch we went to the thrift store and did some more bargain hunting and then headed to the other side of town for my Gastroenterologist appointment.

Dr. B doesn’t seem to think that the acid reflux I’m experiencing is due to the Parkinson’s medicines, so he’s scheduled an endoscopy and an ultrasound for next week, and I gave more blood today for a liver function test.

As caregivers, we always kept a spiral notebook log of everything that happened concerning our loved one, such as when we gave medicine, any behavior changes, any digestion problems, etc., and we always took it to the doctors. So today, for the first time, we used the new notebook we bought yesterday for the start of my log, writing down Dr. B’s directions for me to take my Protonix twice a day and not drink any liquids with my meals. We’ll continue to note anything out of the ordinary in the notebook from now on.

Posted in Uncategorized | Tagged appointments, endoscopy, Friday Date Day, Gastroenterologist, GERD, log, ultrasound | Leave a reply

My Arms Were Swinging This Morning!

Day by Day with a Movement Disorder Posted on October 4, 2006 by DBOctober 4, 2006 1

Such a little thing, that we take for granted, and don’t even notice … when you walk normally, your arms swing quite naturally at your sides, without any thought on your part. Well, that’s not the case for someone with Parkinson’s, and it hasn’t been that way for me, either. In fact, I have tried to consciously do it, and I couldn’t remember how to coordinate it at all.

Daddy has a long hall at his house, and I noticed for the first time this morning when I walked down it that my arms were swinging again, quite naturally. This is quite an accomplishment, and is sure evidence that the Sinemet is working.

I go to the Neurologist tomorrow, and I’m very excited about seeing him. I’m hoping for a definite diagnosis this time, so I can get down to the business of dealing with handling the meds and my GERD. I’m still having a lot of trouble with that, but I have the Gastroenterologist appointment Friday. It seems to all be coming together.

I’m praying for some definite answers. I realize that Parkinson’s is not something anyone would want to have, but knowing is better than not knowing, any day, IMVHO!

Posted in Uncategorized | Tagged appointments, diagnosis, gait, Gastroenterologist, GERD, Parkinson's, prayer, Sinemet | 1 Reply

Acid Reflux Still, Plus Procrastination????

Day by Day with a Movement Disorder Posted on October 1, 2006 by DBOctober 1, 2006 4

The last few days have been relatively uneventful, so I haven’t been posting. We enjoyed our Date Day, and the cane certainly made things easier to navigate than the walker did. My muscles had a good workout for the day, and I could tell it Saturday, but that’s OK. The exercise is good for me, and getting out of the house is even better.

I’m still fighting the acid reflux, though. I can’t seem to get it stopped, and my throat is definitely irritated. I’ve played around with the timing of my meds, eating some crackers when I take the pills, and I think that’s going to be the right thing to do. I’ve also upped my water intake, as that is good for my throat. I’ve been experimenting with when to eat supper, too, in relation to taking that last Sinemet. Yesterday, I took the third one at 4:30PM and ate supper at 5:30. That seemed to work pretty well, as it gives me time to empty my stomach before I get sleepy at 8:00PM. Sometimes I can manage to stay awake later, but not always. But then I’m wide awake at 4:00 or 5:00AM in the morning. I’ve always been an early to bed, early to rise sort of person, so this is nothing new.

What is new, that I’m just now coming to terms with, is that I’m procrastinating on paying bills, and I really don’t know why. I’ve been doing it for months now, even letting some credit cards get late charges. DH gets very upset with me, and I have no defense, because he’s right. I have plenty of time to get it done, and spend way too much time on the computer. It just seems like every time I think about doing certain things, I talk myself out of it. I’m wondering if this isn’t a sign of depression, as this is just not like me at all. Or maybe it’s a PD symptom? Or maybe I’ve just gotten lazy!!

Posted in Uncategorized | Tagged depression, exercise, Friday Date Day, GERD, procrastination, Sinemet | 4 Replies

Sinemet Is Working Again

Day by Day with a Movement Disorder Posted on September 28, 2006 by DBSeptember 28, 2006  

My legs are almost back to normal again, thank goodness. My GERD is still acting up, though. The nausea is gone, but now that my tummy has been jangled, it just doesn’t want to behave itself. My throat is staying sore from the acid backwash, and I’m still getting some acid in my mouth. I’m still on the super blando diet, trying to calm everything down, but no luck so far.

Otherwise, I had a very good day yesterday, and I’m getting off to a pretty good start today. I’ve been so inactive around the house for the last six months, depending on DH to do just about everything, that I need to get busy and help clean up around here. He’s had his hands full taking care of me and the house, and it’s been the house that’s suffered. We’ve reached that clutter point where it’s hard to clean up, because it’s so overwhelming, know what I mean? I hope to have the dining room table all cleared off before he gets back from grocery shopping this morning. That will be a start, anyway.

Posted in Uncategorized | Tagged GERD, house cleaning, Sinemet | Leave a reply

Nutrition Suggestions for GERD plus Sinemet

Day by Day with a Movement Disorder Posted on September 25, 2006 by DBApril 17, 2021 2

After spending this weekend nauseated, it is obvious that I’m going to have to be very careful not only with when I take my medicine, but also with what I eat. After doing a lot of research on my own, and getting a general idea of what I need to have, I was at a loss as to how I was going to decide on a diet, taking my GERD into account.

So I wrote to Jackie, a fellow BLOG VILLAGER at The Vegan Diet, who was kind enough to put together some information for me. She’s done such a wonderful job of pulling together just what I needed that I thought it might help someone else, so here are her suggestions.

I see with GERD you must steer away from :

* fatty or fried foods * peppermint and spearmint * whole milk
* oils *onions * chocolate *high sugar content * creamed foods or soups
* most fast foods * citrus fruits and juices (grapefruit, orange, pineapple, tomato)
* coffee (regular and decaffeinated) * caffeinated soft drinks * tea
* other caffeinated beverages *Spicy or acidic foods

You can have :

apples, berries, melons, bananas, peaches, pears
chicken (no skin), fish, turkey (no skin)
fat-free milk and yogurt
milk free breads
a miniscule amount of fat or butter

Basically my advice is lots of small meals a day, not three meals a day. I eat 5 meals a day, like many people do now for many medical conditions and to keep weight average (not under or overweight), as it keeps my IBS and my sugar levels on track. A few ideas below, not totally vegan, plus useful links at the bottom.

Breakfast

Fruit is good. Papaya is the best I find when I am acidic. Herbal tea (not mint)

Mid morning

Fruit Apples, melon, bananas and nuts like almonds and walnuts (most nutritious).
or Bean dip (chick peas or beans blended with a tiny amount of oil just to make it cream cheese consistency and a fresh herb like cilantro) on a slice of white or brown bread (not seed bread or wholewheat)

Lunch

Tofu dip (no oil with it) with raw vegetables like carrot sticks or
Veggie Soup with tofu cubes

or this Fish Dish recommended by a GERD sufferer:

This recipe is for one serving. Increase the ingredients for additional servings as needed.

One 4oz filet of white fish (orange roughly, sole, turbot, flounder, etc)
One med. Potato. Steamed green vegetable such as broccoli, spinach, peas or asparagus
Parsley or chives for garnish. ¼ tbsp unsalted butter, olive oil or Pam

We will start with the potatoes, because they take the longest to cook, and they tend to retain their heat the longest. The fish and vegetable take only minutes to cook.
Peel and cube potato. Place in cold water to cover. Bring to the boil, and then simmer until fork tender. Drain, leaving just enough cooking liquid for mashing or whipping. You may also use the vegetable broth (recipe below) instead. Add salt to taste. Hold in a warm place. Season fish with salt and pepper to taste. Place non-stick sauté pan over med high heat. Add butter, oil or spray with Pam. When not quite smoking, add fish. Cook two minutes, turn and cook other side for two minutes, or until the filet is light brown and cooked through. If the filet is very thin, one minute on each side may be enough. (You can broil or bake the fish if desired). Serve fish on top of mashed potatoes, surrounded by the steamed vegetables. Garnish with chopped parsley or chives.

or Savory Lentils with Texmati Brown Rice

1/2 lb of organic green lentils (2 ½ cups), rinsed 4 cups water or stock
1/2 onion, chopped 1 cloves of garlic, chopped 2 carrots, sliced
2 stalks celery, chopped 1 bay leaf 2 sprigs of thyme, or ½ tsp dried
Organic Texmati brown rice (follow instructions on package)

To a large pot bring water and lentils to a boil. Add other ingredients. Reduce to the simmer, partially covered. Cook until tender (about 20 to 30 minutes), stirring occasionally and adding more liquid as needed.. Remove the bay leaf and thyme sprigs. Season with salt and freshly ground black pepper to taste. Serve over organic Texmati brown rice. Garnish with chopped parsley. Serve with a light green salad, dressed with the lemon chive dressing above.

Mid Afternoon

Herbal tea (not mint) or glass of strawberry soy milk or flavored fat-free yogurt

Early evening (best for supper)

Grilled or dry stirfried turkey or chicken without skin and steamed or stir fried veggies and mashed potatoes/baked potato or pasta

or Broiled Burgers with Mushrooms and Rice

1 lb lean (10% or less fat) ground beef
1/4 cup seasoned bread crumbs
1/2 tsp dried rosemary (crushed)
2 tsp dried parsley, divided
1 egg white
Nonstick vegetable cooking spray
1 tbsp olive oil
2 cups mushrooms
1 cup fat free skim milk
1 tbsp flour
1 1/2 tbsp Worcestershire sauce
1/4 tsp salt
1 cup long-grain brown rice, cooked according to directions

In a bowl combine ground beef, bread crumbs, rosemary, 1 tsp parsley, and egg white.
Mix well and make into four 3/4″ thick patties. Spray a broiler pan rack with nonstick vegetable cooking spray. Place patties on rack and broil 3 to 4 inches from heat for 5 to 6 minutes on each side or until desired doneness. Put olive oil and mushrooms in a skillet sprayed with nonstick vegetable cooking spray over medium-high heat. Cook 3 to 4 minutes until mushrooms are soft. Combine milk and flour together in a bowl. Add mixture to skillet. Add Worcestershire sauce, the remaining 1 tsp parsley, and salt. Stirring constantly with wire whisk, cook sauce 3 to 4 minutes until thickened. Serve mushroom sauce over broiled burgers with hot cooked brown rice. Makes 4 servings.

3 hours before bed

Another snack like a banana or a cup of clear soup

***************************
Gerd friendly recipes – Vegan and meat eaters (index in right column)

Fat Free Vegan and Vegetarian Recipes

Non Vegetarian Dairy-Free (lots of ideas and substitutes)

VegWeb Fat-Free Recipes plus tons of other recipes that should be suitable

Free Vegan Cookbooks (fabulous ideas) to download

Physicians Committee for Responsible Medicine:
Parkinson articles

I had asked Jackie to help me find foods that would be suitable for a GERD diet and take into account the fact that Sinemet cannot be taken with large amounts of protein. I’d say she went out of her way to be helpful, wouldn’t you? But I shouldn’t be surprised. Every post she has on her blogs is just this thorough.

I can’t thank her enough for all this information, but I can ask you to visit her blog, so please stop by


The Vegan Diet

Posted in Uncategorized | Tagged diet, GERD, nausea, nutrition, Parkinson's, Sinemet | 2 Replies

Having My First Bout of Med Side Effects

Day by Day with a Movement Disorder Posted on September 24, 2006 by DBSeptember 24, 2006  

The nausea started yesterday evening, and it’s continued today. I wasn’t having any until I changed the Sinemet dose from after meals to before meals. But the more I read, the more it seemed that the way to get maximum benefit from the dose is to take it 30 min to 1 hr before meals. That gives the medicine a chance to get out of the stomach before the food hits it. I am eating a few crackers with it, though, out of necessity. Crackers don’t have any protein in them worth counting, so they won’t cause absorption problems for the Sinemet in the small intestines.

I really think I just ate too many grapes the last few days, trying to increase my intake of antioxidant foods. Since I have GERD, too, it’s hard for my system to handle any citrus fruit. Plus, I’ve been drinking Powerades to keep my fluid intake high and boost my vitamin K. I’m on a diuretic to keep my feet and ankles from swelling, so I need the fluids and the K, too. I had gotten tired of bananas when I had colitis so long, but I guess they’re back in my diet, along with plain water.

I’m eating macaroni and cheese for lunch, and I’ll stay on the “white diet,” I call it, until my tummy calms down.

Posted in Uncategorized | Tagged GERD, nausea, Quality of Life, Sinemet | Leave a reply

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