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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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My Digestive System Is Behaving! Not So Sure about Us??

Day by Day with a Movement Disorder Posted on December 31, 2006 by DBDecember 31, 2006 6

It looks like the Gastroenterologist has found the right combination to get my digestive system working again in a manageable way. I haven’t had any pain or bloating now for several days, and I’ve been able to eat some things I wouldn’t have dreamed of trying just last week. I still don’t have an appetite, but I still need to lose weight, too! So I’ll count that as a blessing for right now.

We had our Date Day today, instead of yesterday, because our respite care giver couldn’t come yesterday. We had an enjoyable day together, not really doing much, but just relaxing. With my balance as wacky as it is right now, there’s not much else we could do.

Daddy, DH, and I had our first big flare up of tempers this evening. It was just a matter of time before it happened. We’ve been trying to stall it by getting out of the house a couple of days each week, but it was inevitable.

Daddy hates the idea of having anybody in his house, doing things he would normally be doing, or changing his routines. He’s been independent too long to take easily to having DH and me here, and certainly to having Frances here two days a week. And he hates not being able to take care of himself any more.

We’ve understood how he felt, so we’ve been biting our tongues ever since he fell, as his bitterness shows through in almost everything he says to us. Hopefully this show of temper on all our parts will clear the air for a little while, but that remains to be seen.

So my relaxing day had a somewhat dramatic end, but as thick as the tension has been around here, it may well have been for the best in the long run. I can only hope so.

Posted in Uncategorized | Tagged balance, bloating, care giving, difficulty walking, elimination difficulties, Friday Date Day, Gastroenterologist, Parkinson's, Quality of Life, respite care, stomach, weight loss | 6 Replies

Christmas Eve

Day by Day with a Movement Disorder Posted on December 24, 2006 by DBDecember 24, 2006 8

I continue on the full regimen that the Gastroenterologist has me on, so far with little success. I did manage to eat a baked sweet potato last night without any pain afterwards, so I consider that an improvement, anyway. They are full of vitamins and fiber, so they make a good small meal for me right now.

We went on our Date Day Friday and bought a few things at the only Estate Sale open in the whole city! By the time we got there they weren’t crowded, and much of the stuff had been sold, but we did manage to find a few little things that I think will sell well. Plus, I have a thing for real hankies. I can’t stand to use Kleenex tissue! I like a real, soft, cloth handkerchief on my tender nose. So we’re always on the lookout at such sales for old hankies, and we found what appear to be some brand new ones. I was glad to get them.

We piddled around a few hours at the nearest Thrift Store and at Walmart, ate a grilled chicken sandwich at Chic Filet, and then we went to see The Nativity Story movie. I thoroughly enjoyed it. The scenery and the detail of all the activities going on in the background are supposed to be very authentic to the time period, so I found that part fascinating. As to the plot, they did a good job of presenting the whole thing in a believable way, clearly portraying the disdain of, and even shunning by, their neighbors of this young couple who had “not waited the alloted time before having sex.”

The harsh journey to Bethlehem was dramatic, but maybe a little too long time wise, but certainly worth it for the story line. It was a relaxing few hours that helped to emphasize the true meaning of Christmas. I was very glad we went to see it.

Being able to look forward to these times to “escape” care giving have been a Godsend. It’s funny in a way. The lady who stays with Daddy for us lives with her own elderly mother. She’s always glad to be able to get away from her for awhile! LOL! And here we are, paying her so we can get away from Daddy for awhile. But Daddy never asks her to do anything. As soon as she’s gone, he starts in with his list of things for us to do. It’s really funny, as long as we’re rested and in good humor.

So, here I am, in the early hours of Christmas Eve morning, writing this post. Frances will be coming this morning, so I will get to go to church today, thank goodness. I need that right now. I’ve missed my church family lately more than I realized, but we’ve always been regular attenders, and I’ve been out so much this year with my own illness, and now Daddy’s, that I’m losing my connection to them. God meant for us to assemble ourselves together, and not to worship alone all the time.

So I’m looking forward to seeing my friends in Sunday School and worshiping together in Church today.

May God shower his blessings on each of you through this coming year, and may the Glory of the Christ Child shine all around you. Amen.

Posted in Uncategorized | Tagged care giving, Christmas, Church family, Friday Date Day, Gastroenterologist, God, Parkinson's, prayer, respite care, Sunday, The Nativity Story | 8 Replies

We Went on a Date Today!!

Day by Day with a Movement Disorder Posted on December 9, 2006 by DBDecember 9, 2006 4

Thanks to being able to hire the same sitter we had used several years ago, when we were taking care of my mother and father in law, we were able to go out on our Date Day today! It was wonderful to get out of the house and know that Daddy would be well taken care of.

I set a fairly light itinerary for the day, since I knew I was so tired, but I did want to at least go to a few Estate Sales. We had very good luck at one of them, since we caught them at that stage when they just wanted to get rid of everything. That doesn’t happen very often, but when we’re lucky enough to find a real sale like that, we usually leave with some real bargains. Today was no exception. Now all I have to do (HA!) is find the time to photograph everything we bought and write up the descriptions, so we can put them up for sale on eBay.

I managed to take several doses of Tylenol during the day without DH realizing it, as I didn’t want him to know that I was so achy. I was determined that our day together not be spoiled. I only used the cane at one house, because the driveway was very steep, but my walking was stiff and awkward feeling all day today. That’s a sure sign of just how tired I am.

I had a bad headache today, too, something I rarely have any more. I suspect that’s because I’m still not getting enough sleep. I’ve already had my night medicine and a sleeping pill, as I write this, and I plan to go to sleep as soon as I finish this post. I’m really not having that much trouble going to sleep. It’s staying asleep that’s giving me trouble. And, of course, my tummy couldn’t get through the day without putting up a fuss. I was extra careful to eat bland foods, but here I sit, with the hot pad across my middle, trying to make things feel better.

Posted in Uncategorized | Tagged care giving, difficulty walking, eBay, Friday Date Day, insomnia, respite care | 4 Replies

We’ve Hired a Respite Aide!!

Day by Day with a Movement Disorder Posted on December 7, 2006 by DBDecember 7, 2006 4

I talked to Daddy yesterday about me needing some rest and a chance to settle my nerves and my stomach, and the fact that I had a doctor’s appointment coming up that would require finding someone to stay with him that day. He was agreeable to me trying to get the lady who had stayed at the house when I needed relief with Mama. I was a little surprised he agreed to it so quickly, but very glad he did.

So, I left a message for her to call, and she and I made some arrangements last night. She’s going to spend all day on Friday and part of the day on Sunday with Daddy, so DH and I can get completely away from the care giving responsibilities for just a little while. That will be good for us both, but particularly for me, I think. It also means we can go back to going to the yard sales and Estate Sales and having our Date Day again. I’ve really missed that. And I can go to at least Sunday School, and probably church, too.

Thank goodness Daddy has never been one to spend a lot of money, so we should be able to take care of the respite care costs without a problem. I really feel for those care givers who are not able to pay anyone to give themselves a break every once in awhile. I hope for their sakes that they have family nearby who can spell them. Since we don’t have family near, this is our best choice. She’s already used to Daddy, and he’s already used to her, and we trust her. We couldn’t ask for a better combination.

Frances was so excited to hear from us, being the Christmas season, and she was between jobs. She was more than happy to take part time work, under the circumstances. I told her we’d understand if she found full time employment, as long as she kept her obligation for my Dec. 20th appointment. She agreed. So a salary was agreed on, and she will be at Daddy’s at 7:00AM this Friday!!

Posted in Uncategorized | Tagged care giving, Friday Date Day, respite care, stomach, stress | 4 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

Thankful to be Used by God

Day by Day with a Movement Disorder Posted on November 7, 2006 by DBNovember 7, 2006 4

The last few days have been wonderful, with no problems of any kind. I’ve been exercising as much as I possibly can and catching up on some housework and eBay work that’s been put aside.

I’ve been glowing from the experience we had while on our Date Day Friday. While following the directions from one estate or yard sale to the next, we had trouble finding one address. We had about decided to just skip it, but DH happened to see a sign in the local grocery store window, advertising the estate sale. I had read the directions wrong. So, we tried again and found the house. There weren’t any cars parked around it, and we had to ring the doorbell. An older woman answered the door and invited us in to a house full of stuff in every room. But instead of it being things you would expect to be hers, it all seemed to be the kinds of things a young man would have.

After we looked around a few minutes and oooed and aahed over the beautiful old woodwork on the old home, she began to get talkative. She told us all about her son, who had lived in the house for about a year, before he had a seizure, fell in the front yard late one night while walking his dog, and ended up having five back surgeries that left him a paraplegic.

He had to move in with his parents and sell his home and his possessions, so his Mama was doing the selling. She was obviously upset as she related his story. She related how he was still having difficulty adjusting to this drastic change in his life, which seems pretty reasonable, under the circumstances. Of course, I was using my cane, so when I told her I had been diagnosed with Parkinson’s she talked even more about how emotional he had become. I suggested he visit Wheelie Catholic, as Ruth has such inspirational posts and could find people in similar circumstances for him to talk to. She seemed very grateful.

We didn’t see anything we wanted to buy, but we stayed there a long time, talking and mostly listening, because she really needed to talk. Both of us felt like God had led us straight to her. Our past experiences as caregivers, my current situation as someone newly diagnosed with a debilitating disease, and the similarity of our ages, all made her comfortable opening up. She cried a little and talked a lot, and we promised to pray for her son.

It was a perfect example of God working all things for good, and it has left me with a very thankful heart that we were able to be of help to this sweet lady, struggling to help her son, and yet feeling so helpless.

Posted in Uncategorized | Tagged cane, care giving, Friday Date Day, God, prayer | 4 Replies

Am I in Denial?

Day by Day with a Movement Disorder Posted on October 21, 2006 by DBOctober 21, 2006 2

We had our usual Date Day yesterday, and had a good time, as usual. It was windy and cold, and I was bundled up. DH was in short sleeves, enjoying the brisk fall weather. We’ve always been at opposite ends of the hot natured, cold natured spectrum, and it looks like the PD is just going to make that worse :).

We found a few good buys, but at one of the estate sales we found one of those deluxe model walkers with the padded seat and all the extra pockets that really looked brand new. The daughter selling everything said her mother had only used it a few months, and that’s exactly what it looked like. She didn’t want much for it, as I’ve been pricing them, and I knew it was a good buy. So, even though I don’t need it now, we bought it.

As we paid for it, she made some remark about how I was going to enjoy using it, and I replied that I couldn’t really say I would enjoy using it, but I knew that I would eventually need it. My DH went on ahead to the car, so he could figure out how to pack it away, and when I caught up with him, he had tears in his eyes. I, on the other hand, was totally unaffected. When I asked him about why he thought it was bothering him so much more than it did me, he answered that maybe he loved me more than I loved myself.

That’s a load to think about for sure! It did get me to thinking that maybe all my “busyness” reading about Parkinson’s and writing this blog is somehow a way to block out my emotions about it. I don’t know. All I do know is that for right now I’m honestly not upset by all this. It’s certainly not because I haven’t read about how horribly debilitating it can become, because I’ve read plenty of that. All I know is that I’ve laid it in God’s hands, and I’m trusting Him to make the best of whatever happens. I do pray daily that my DH will find some peace about this whole situation.

Posted in Uncategorized | Tagged care giving, denial, Friday Date Day, God, Love, prayer, walker | 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

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

Starting Now to Work on Future Quality of Life

Day by Day with a Movement Disorder Posted on September 22, 2006 by DBMay 7, 2016 2

We had our Date Day today, spending a pleasant day going from one Estate Sale to another. We found what I think will be a few really good purchases, but we won’t really know until we put them up for auction and see what they sell for.

We went to one sale that was right around the corner from the house I grew up in. It felt really odd being back in such a familiar neighborhood, but I’m glad we went. I told the fellow who was having the sale that I trick or treated at that house all through my childhood. We did buy a few things there, too. And we swung by my old home, just to see how it looked. My old street still looks pretty much as it did when I was a child, which is truly amazing, because this area of town has become run down over the years.

We had decided if we could not find an adjustable cane at a sale today, since we’ve been looking for one for several weeks, we would buy a new one on the way home. So now I have a cane, too! I searched the Internet and found Exercises for the Parkinson’s Patient. Until I find out otherwise, I’m assuming my improvement means I do have Parkinson’s, and I’m starting now to think about what I eat and what I can do physically to improve my quality of life for as long as possible.

Posted in Uncategorized | Tagged cane, exercise, Friday Date Day, Parkinson's, Quality of Life | 2 Replies

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