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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: eating out

43rd Wedding Anniversary!

Day by Day with a Movement Disorder Posted on June 14, 2007 by DBJune 14, 2007 8

How about that! Yesterday we celebrated our 43rd wedding anniversary. We’ve actually been seriously in love since 1960, but we waited for me to graduate from college before we got married. I wouldn’t recommend that long an engagement to anyone, but getting my education was important, and it’s helped our family financially all these years.

We went to a movie and ate out and generally enjoyed being with each other, as we always do. I would wish that all marriages could last so long with so much love still there after all the years.

It did get me out of the house and away from all these estate issues. We’ll go to the bank today and open the ESTATE bank account and change over all the CD’s to our name. That will be a couple of more things I can then cross off my task list, which is a very satisfying thing to do.

What with all the stuff we’ve been cleaning out of Daddy’s house, I finally got up the gumption to clean out Pop’s closet at our house. My FIL lived with us the last few years of his life, and when he died, I just couldn’t bring myself to deal with his clothes. They weren’t really in my way, so I put it off. Well, now I need the closet to store some of Mama and Daddy’s stuff until we can sell it on eBay, so all of Pop’s things are bagged up and ready to give to the Thrift Store. I will have to get the name tag labels out of everything, though, as he was in an Assisted Living home his last year, and everything is marked.

I’ve finally worked our eBay store back up to 250 items listed, which is about all we can afford at one time. Maybe now some other things on my To Do list can move up the line.

I did sleep longer last night, but it was because I took a Darvocet last night. The movie gave me a headache, plus I was generally achy all over. I think I’ve been over doing it lately, trying to box a lot of things up. Doing a lot more leaning over and picking things up than I have in a long time, and my muscles are complaining about it. Walking is great, but it doesn’t take care of all the muscle groups. I have been doing some simple arm exercises with the 1 lb weights, and I’ve gone back to doing all the neck and shoulder exercises that the Physical Therapist put me on some years ago for the degenerated disk in my neck. I continue to do the Tai Chi, as well, so I’m really trying to build up my muscle tone. I do have a set of exercise videos that I bought several years ago, but that means getting down on the floor. Getting down isn’t the problem .. getting back up is! LOL So, I’m postponing using them for awhile. I figure by the time the weather turns cold I’ll be strong enough to get up and down safely.

We’re still waiting for them to start work on our new garage, as we special ordered everything to match our house. I’m getting antsy, seeing that beautiful driveway and slab, with no building going on. But it will come, sometime soon. I just need to be patient.

Our older DD and SIL have moved into Daddy’s house, in the midst of quite a mess. I’m glad it’s them and not us!! But youth puts up with stuff that age can’t or won’t. We’re working as hard as we can to empty the house of all of my parent’s things, but it’s a slow go.

So, I continue to stay busy, improving little by little each day. Crossing things off my list reduces my stress level, so I rejoice every time I finish one small part of this huge undertaking. Some days I have to hunt for something to feel positive about, but I work hard at staying optimistic. Thanks to all of you dear friends for your encouragement!!!!

Posted in Uncategorized | Tagged eating out, eBay, exercise, headache, insomnia, Physical Therapy, Quality of Life, settling an estate, stress, Tai Chi | 8 Replies

Another Great Day!

Day by Day with a Movement Disorder Posted on November 18, 2006 by DBMay 7, 2016  

We had a wonderful Date Day yesterday, with beautiful Fall weather, and some really nice finds at a handful of garage/moving and Estate sales. Because of the direction we headed, DH didn’t have to deal with horrible Friday afternoon traffic when it was time to head home, like he usually does, so that made it even better.

We ate out at a buffet, so I was able to find plenty that I could eat, while he could get what he wanted. I’ve gotten in the habit of taking a couple of Beano caplets before I eat, anytime I even suspect that I’m going to eat something that might produce gas, and that seems to be helping, too. All and all, I seem to be settling into a pretty good idea of how to eat in such a way as to protect my stomach, as things have been pretty calm for several days now.

I wrote to the Ask the Doctor mailing list on the National Parkinson’s Foundation site last week, and my post showed up in the email today. It takes about a week between sending in a question and getting an answer, as these are practicing physicians, who take the time to answer the questions. I had asked the mailing list doctor if he could suggest any meds that I could take in patch form, to bypass my stomach.

The doctor suggested I try the form of Selegiline, called Zelepar, that dissolves under the tongue and bypasses the stomach, and also go back to Sinemet, with a larger dose of Lodocyn. According to him, Requip causes more nausea than Sinemet does. My Dr. S. had said he couldn’t promise that the Requip wouldn’t make me more nauseated, but that he wanted to give it a try.

So, for now, at least, I’ll stick to the Requip, but if the nausea and bloating start up again, I think I’ll make an appointment with the Neurologist for as soon as possible, and see what he says about the Parkinsons’s Foundation Doctor’s suggestion.

Posted in Uncategorized | Tagged Ask the Doctor, Beano, eating out, Friday Date Day, gas, Lodosyn, nausea, Requip, Selegiline, Sinemet, Zelepar | Leave a reply

Information on Swallowing Problems with PD

Day by Day with a Movement Disorder Posted on November 8, 2006 by DBMay 7, 2016 4

One of my dear blogging friends, Marion, asked me in her comment today for help planning a menu for an Advanced Parkinson’s guest she was expecting, who has trouble swallowing. After Googling on the subject, this seems to be the best general information I could find.

This is an excerpt from a very well written pdf article titled, Parkinson’s and Swallowing.

It is important that you continue eating your regular food until you are no longer able to do so safely. A regular diet with a wide range of tastes and textures is important to keep all of your muscles working, and encourage proper nutrition and hydration. Only if you begin experiencing significant difficulty, you may need to adapt your diet. While each individual will have different problems and therefore different solutions, the following suggestions may help.

SUGGESTED FOOD

• Food that is soft and moist, with a good flavour and smell, tends to be easier to swallow: custards, jelly, pureed fruit, sauces, spices and herbs.

• Avoid foods which are hard, dry, crumbly or stringy.

• Avoid mixed consistencies (e.g. solid plus liquid).

• Be careful with foods which stick to the roof of the mouth or get caught around the mouth: dry mashed potatoes, tomato with skin on, biscuits, bran flakes, hard-boiled eggs.

• Thicker fluids (e.g. nectars, milk shakes) may be easier to control and swallow than thin clear liquids, as they move more slowly.

• Keep food presentation appetising: flavour, smell and appearance of food.

• Relax and enjoy your food. It is good to have a break between mouthfuls and take sips of water during the meal. This will not only help you relax, but also allow you to clear your throat and mouth. You may need to swallow twice to clear each mouthful.

• Eat smaller portions more frequently, especially if time for meals is limited.

POSSIBLE PROBLEM FOODS

• mixed textures, like liquid with bits in (e.g. minestrone soup or watery mince);

• flakey biscuits;

• hard toast or nuts, chocolate, grains, seeds;

• stringy, fibrous vegetables


FOODS THAT MAY BE EASIER TO SWALLOW

• milk

• mousse, custard, yogurt, ice cream

• souffle, omelette

• casseroles

• soup (Creamed would be my suggestion, based on other articles I’ve read.)

• fruit juice, pureed fruit

• pancakes (with syrup etc.)

• soft boiled rice

• well cooked vegetables

• banana.

Hopefully this information will be of some help to Marion as she plans her menu, and possibly to others as well.

Posted in Uncategorized | Tagged diet, eating out, nutrition, Parkinson's, Quality of Life, swallowing | 4 Replies

Heavy Metals Tests & Access Problems

Day by Day with a Movement Disorder Posted on September 12, 2006 by DBSeptember 12, 2006  

Yesterday we turned in my 24 hour urine catch to the lab for the test for heavy metals. Since we live within a quarter of a mile of what the EPA called one of the worst toxic waste sites they ever had to clean up, we’re very anxious to hear the results on that one. Obviously, there are several metals that could cause the PN, so this is a key test. I started to just let DH take the container back by himself, but it’s a good thing I didn’t. They had such a hard time drawing blood Thursday that one of the vials had clotted, so they had to draw more blood from me yesterday. That would have been terrible, to go to the doctor next week and not have all the tests completed.

I’m finding the oddest places that I’m having trouble navigating with the walker. The door to the bathroom at the hospital lab was so heavy that I couldn’t get it open and get the walker through it, too. DH had to get up and hold the door for me. Then, when I got in the bathroom, there was no hold bar — in a HOSPITAL bathroom! I couldn’t believe it! We got the phone number of the maintenance department from the lab people. That was the only number they could give us, figuring they would know who we would need to contact to complain about the bathroom not being compliant.

We went to an old Wendy’s for lunch, and it took 2 people to hold 2 sets of doors open at the same time to get the walker through the vestibule doors, the way they opened on each other. That’s crazy!! Nobody in a wheelchair would be able to get in that place alone. They’re going to get a call, too. We’ve been talking to managers for years about maneuverability issues we saw pertaining to wheelchairs, but we’ve obviously missed some in places we never took my mother. You just don’t notice things like that until you are confronted with them yourself.

Posted in Uncategorized | Tagged accessible, eating out, peripheral neuropathy, tests, toxic chemicals, walker | Leave a reply

Another Busy Day

Day by Day with a Movement Disorder Posted on August 31, 2006 by DBAugust 31, 2006  

Our DD wanted me to go with her to her Neurologist’s appointment today, so we packed up the walker, with its brand new tennis balls installed, and headed off to the big city. We met her at the doctor’s and I went up with her. I chose not to take the walker, because I didn’t want to be the center of attention. The doctor was extremely pleased with her progress, and she’s dismissed her finally. Her peripheral neuropathy problems started in mid May of last year, so this has been quite an ordeal for her.

We parted ways after her appointment and we spent a pleasant time browsing through Barnes & Noble books. That’s a treat that I haven’t been able to do for over 4 months now. It was fun being able to move around freely with the walker. I did notice that I got tired very quickly if I stopped and stood still to look at a book for any length of time. My feet would burn and sting and get prickly. So we’d move along to another section and browse there for awhile. I thoroughly enjoyed myself!

We ate out at a buffet for lunch. I couldn’t see how the walker would be of any help, juggling a plate, so we left it in the car. That was a mistake. I realize now that I should have taken it in, walked to the food bar and left it to the side. I could have filled my plate, then DH could have taken both plates back to the table, and I could have used the walker to go back to our table. I’ll know better next time.

Tomorrow’s our Date Day, and I’m looking forward to getting out again!!!

Posted in Uncategorized | Tagged eating out, walker | Leave a reply

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