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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 Wonderful Christian Family

Day by Day with a Movement Disorder Posted on October 19, 2006 by DBOctober 19, 2006  

I’ve been overwhelmed by the amount of concern that the people at church have shown to me since they have found out about my diagnosis. I’ve always known that our church members were particularly loving and compassionate when someone was sick or there was a death in a family, but I’m seeing it directed at me this time. We’ve recently had a greatly loved church member die of complications from Parkinson’s, which is probably why everyone has been so solicitous, too.

All I can say when they say how sorry they are to hear about the Parkinson’s diagnosis is that it’s OK, because that’s really the way I feel. I just haven’t gotten upset about it. I’m not saying I won’t at some point in the future, but for now, God’s GRACE is holding me steady.

I did have a chance to talk to the other person at church who has PD last night, to see if he had trouble with his stomach when he started on the meds. He didn’t have any problems at all, which I’m glad of, for his sake. I already had a very touchy digestive system, having just finished a long bout with colitis, so it’s not really surprising that the meds are giving me trouble. At least we’ve finally had a chance to talk, and it feels good knowing there’s someone I know who is going through the same thing I am, even though he’s much older than I am. He’s been on meds for five years already.

Posted in Uncategorized | Tagged Church family, colitis, God, Love, support | Leave a reply

First Tai Chi Lesson

Day by Day with a Movement Disorder Posted on October 14, 2006 by DBOctober 14, 2006 2

My DSL is on the fritz right now, so I’ve not been able to get on the Internet much lately. So I’m behind on posting here.

I went Thursday for my first private lesson with Sensei Tetsu for Tai Chi. I had taken group lessons from him several years ago, when I was under the stress of just having lost my mother to Alzheimer’s and was then still taking care of my FIL, who also had Alzheimer’s. I found the exercise to be physically challenging and emotionally releasing.

I had read that it was a recommended exercise for Parkinson’s patients, so it seemed logical to try to work on it again. Sensei was happy to help me in any way he could.

He started me from the very beginning and put me through quite a workout over the thirty minutes of the lesson. I had to tell him to stop twice, because my legs were trembling so badly, so he walked me around the mat and helped me work on my deep breathing, until I was ready to begin again. I could feel my legs and arms limber up and obey my commands more easily as the lesson progressed.

Tai Chi requires intense concentration on the most minute body position changes, and the slow flowing movements are just perfect for me. I would lose my balance at times, of course, but he understood that, and just kept going, giving me the chance to catch up with him. He’s an extremely patient teacher, and just perfect for my needs. I hope to continue seeing him once a week for some time.

He’s not cheap, by any means, but neither is all the medicine I’m on. And neither would a nursing home be, if I ended up in one. So my DH and I just consider the expense to be like any other medicine that has been prescribed. I wouldn’t think of not getting a prescription filled, and I am not going to do without this exercise, either.

We intend to do everything we possibly can to delay the debilitating stage of PD as long as possible, in the hope that a cure, or at the very least, better medicines or procedures, will be discovered before I reach that point. We leave my ultimate outcome in God’s hands, but will do everything we can humanly do toward a good result, as well. I believe that is what God expects us to do.

Posted in Uncategorized | Tagged exercise, God, Tai Chi | 2 Replies

Telling People I Have Parkinson’s

Day by Day with a Movement Disorder Posted on October 8, 2006 by DBOctober 8, 2006 6

Today in Sunday School I told my friends that I have Parkinson’s. There were a few gasps, and a few saying at least now I know what’s wrong, but everyone was very supportive and tried to be very positive. We even had a special prayer time for me and for my DH, who has the burden of seeing another care giving task in his future. That part of this disease bothers me more than anything else. We thought we would be through with our care giving when my Daddy finally passes, bless his heart, but now it will just start all over again for him at some point in the future.

We can only hope that new medicines and maybe even a cure will be found by the time I am at the stage of needing full time care. I choose to be optimistic and believe that the meds are going to delay the debilitating stage for me for a long time. I am exercising and eating well balanced meals, as well as getting plenty of sleep and drinking plenty of water, too. I hope to be starting the Tai Chi classes soon, as well. If there’s anything more I can do, I will do it. And above all, I know that God loves me.

I’ve already told my dear sweet hubby that I don’t expect him to keep me at home the way we were able to keep his dad and my mother. He will be a lot older and he’ll be doing it by himself, so there’s probably going to be a point where he just can’t do it all any more. I wanted him to know that I understand, but it just upset him to hear me talking about it, and he made me change the subject. I’m going to be praying a lot for him, that he will be strong through all of this. I love him so much.

Posted in Uncategorized | Tagged care giving, God, Love, prayer, Sunday | 6 Replies

I Don’t Want to Jinx It, But ….

Day by Day with a Movement Disorder Posted on September 21, 2006 by DBSeptember 21, 2006  

I think I’m better! I didn’t dare write anything yesterday. In fact, I was in a bubble of enthusiasm all day, afraid to say the words out loud, for fear it would burst the bubble, and my legs would feel like two ton weights again, slogging through mud.

I’ve been on the Sinemet since Monday night, and I woke up yesterday walking amazingly better. I wouldn’t call it normal, but for me, it was a vast improvement. I was also aware of being happier than I have been in quite some time, but then who wouldn’t be! I noticed that even my upper body movements were faster, which I really hadn’t realized had slowed down.

I think I spent every spare minute all day long thanking God for this miracle. I really over did the physical work, though, as there were so many things I’ve put off doing, because I just haven’t been up to it. I’d work for awhile, and then rest, and then work awhile longer. My leg muscles are telling on me today, for sure, but I’m proud of what I was able to accomplish yesterday.

We didn’t tell anybody at church last night, and I still used the walker. I don’t want to say anything until we get an actual diagnosis, and that will be on my next appointment. From what I’ve read, Parkinson’s symptoms can fluctuate, so one moment can be better or worse than the next, so for now I don’t want to have to explain.

We have decided that if we don’t find one of those adjustable canes with the extra legs on the bottom at an estate sale tomorrow, we’re going to buy one. At the rate I’m going, I may not need the walker much longer. My balance is still not good, so I’ll use the cane, and we’ll keep the walker in the car, in case this doesn’t last. That’s the plan for now, anyway. The balance thing is probably from the Peripheral Neuropathy, anyway, and I don’t think he can do anything about that, except to monitor it to see if it progresses or improves.

Posted in Uncategorized | Tagged cane, God, Parkinson's, peripheral neuropathy, prayer, Sinemet | Leave a reply

Thoughts on Lingering at Death’s Door

Day by Day with a Movement Disorder Posted on September 5, 2006 by DBSeptember 5, 2006  

Another dear saint from our church family has gone on to be with her Lord today, after a long bout with cancer. The last month has been almost totally a vigil by family members, attending her wasting physical body’s needs, while she was no longer aware of them. We’ve been through the same thing twice ourselves, with my mother and my FIL, and to a lesser extent, with my MIL, who died in Intensive Care, rather than at home under our care. Those last days, weeks, or months, as the case may be, are very hard on the family emotionally and physically, but after time has passed, I have found that those days actually help with the healing process of grief. You can look back and know that you were there with them in their final hours, that they were at home, where they wanted to be, with family near.

I’ve grown to be a much more spiritual person for having the privilege of watching three loved ones breathe their last breath on earth, knowing they were breathing their first in Heaven. I understand things on a different level now, not necessarily that I can articulate, but every thing and every one is appreciated more. I hug more. I cry more. I laugh more. I’m more.

Posted in Uncategorized | Tagged death, family, God, Love | Leave a reply

Great Visit from DD

Day by Day with a Movement Disorder Posted on September 4, 2006 by DBSeptember 4, 2006 2

The TV’s back on, I’m back on the computer, the cat is satisfied that there are no strangers in the house, so everything’s back to the status quo.

It sure was wonderful, though, for today and yesterday afternoon on, to have our younger DD home for a quiet visit. I think it did her as much good as it did me. We didn’t go anywhere, and we really didn’t do anything. We just sat on the sofa and chatted, if the spirit moved us, or just enjoyed doing nothing.

She leads such a hectic life, between work and chauffeuring three active children here and yon from one practice to another, plus her part of the housework. Being still, with nobody hollering Mama! was probably quite restful for her. And I just enjoyed being with her. For all that it came because of serious illness, I did get to spend a lot of time with our older DD this last year, and I was missing spending some time with our younger DD, too.

Nothing has changed, leg wise. My digestive system continues to behave itself, and I’m eating normally now. Of course I’m still on the high powered medicines. I’m to report my progress to the Gastroenterologist’s nurse tomorrow, and she’ll tell me what to cut back on next.

We watched a little bit of the MDA telethon today. I thank God for two healthy children, who have grown into loving women, who are good people. Both have a strong faith in Jesus, and they are both married to Christian men. All three of our grandchildren are healthy, and they are saved, too. Yes, we have much to be thankful for.

For those parents who are struggling through the anquish of seeing that precious little one be diagnosed with a serious illness, my heart cries out for you. I can’t begin to understand how you feel, but I can pray for you. May God be with you today in a close and intimate way. Amen.

Posted in Uncategorized | Tagged Gastroenterologist, God, Love, prayer, prescriptions | 2 Replies

A Truly Normal Saturday!

Day by Day with a Movement Disorder Posted on September 3, 2006 by DBSeptember 3, 2006  

For the first time since the end of March, I got out my digital camera and took a series of pictures of an item to put on eBay last night. That’s the first time I’ve touched that camera in all this time. I don’t think I could have held it steady much sooner than now, as I was so weakened by my bout of colitis. Anyway, it felt good to actually get a new listing up again, and I plan to get at least one up each day from now on, and hopefully two most days.

My strength has improved some, what with all the exercise I’ve been doing, but my walking is still very shaky. I have a Neurologist appointment this week, and I’m really looking forward to that. I’ve been really patient, and I’m praying that this will be the time for all the tests that will help him figure out what’s wrong with me.

I am so very thankful to God for my DH, who has been so attentive and so supportive through all these months. I don’t know what I would have done without him. I don’t know how people, who don’t have Jesus to hold onto, make it through the scary times that life can throw their way,either.

Posted in Uncategorized | Tagged appointments, colitis, God, Love, Neurologist, prayer, tests | Leave a reply

Glory to GOD!!

Day by Day with a Movement Disorder Posted on August 28, 2006 by DBAugust 28, 2006  

Yesterday was a particularly good day for me. I’m proud of myself for overcoming my inhibitions about using the walker. I found that the people at church were more understanding about my saying I wasn’t worse, that it was just for safety and to make things easier for me, than I had expected.

The worship service and Sunday School blessed me more than usual, and I just felt particularly close to God. I keep a running dialogue with God going all day long, as a usual habit, but some days it seems more like a monologue, if you know what I mean. Yesterday was one of those special days when everything just seemed to ooze God’s love for me, and I’ll be remembering it as a landmark for a long time, I’m know.

Today, my legs are tired, as we did more at church yesterday than usual. Even with the walker, it was a lot of walking. If I had not used the walker, we would not have been able to participate in all the fellowship activities of the day. That would have been a shame.

It’s strange that I should be writing this when one of Ruth’s post at Wheelie Catholic today is about people with disabilities being included in church. She emphasizes that inclusion involves the disabled person actively being involved in church activities, something I had all but dropped out of, partly by medical necessity, and partly by convenience (read that just too easy to stay at home).

My DH has been really patient with me, as he’s a Deacon and very rarely ever misses a service. He hasn’t tried to push me into going when I wasn’t ready to go, and I really appreciate that. But I know he’d much prefer that we go together, the way we always have. Now that I’ve had a taste of the sheer joy of group worship again, I’m going to try harder to not let laziness get in the way of going all the time, or at least most of the time.

Posted in Uncategorized | Tagged God, Love, Sunday, walker | Leave a reply

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