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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: death

Tearful Thoughts for RUTH

Day by Day with a Movement Disorder Posted on April 9, 2007 by DBApril 9, 2007 1

I started trying to read and catch up on what’s been happening on everyone’s blogs last night, so a few of you friends you may have noticed a quick comment from me. I was grieved to read this morning that Ruth’s dear hubby, Mick, passed away on April 6. His passing was peaceful, with family there to share this precious time with him. Ruth is now dealing with all that has to be done, after faithfully taking care of him for the almost two years since he was diagnosed with cancer.

There’s just no way to put into words the depth of sorrow I feel for her, not so much that Mick’s struggle is over, but that this horrible cancer had to strike such wonderful people to begin with.

She’s sent me several e-postcards of late, just to let me know she was thinking of me. And all that time she was dealing with Mick’s eminent death, which, of course, I did not realize at the time. It just makes her cards that much more precious to know that she was taking that time for me. That’s just the kind of person she is!
.

Posted in Uncategorized | Tagged cancer donation, care giving, death, grieving | 1 Reply

Lots to Do Settling Daddy’s Estate

Day by Day with a Movement Disorder Posted on March 29, 2007 by DBMarch 29, 2007 12

This is the second time I’ve been the executor of an estate, but Daddy’s is much more involved than Pop’s was. Luckily, we have a niece who is a lawyer, so I’ll have some help when I’m ready. I’ve tried researching what I need to do on the Internet, and I’ve been surprised at how little help I could find. Everything seems to be geared toward Estate Planning, rather than settling an estate.

April 15th is getting closer, too, and I’ve just not been up to dealing with important numbers. I did get a good start today, though. Starting is half the battle for me, as I find I’ve become quite the procrastinator in the last few years. I don’t know if that’s a sign of old age LOL, stress, or Parkinson’s!

We walked again this morning, but I was slow as mud. I made it around for a half mile, using the walker. I’ve been using the walker all this week, but I depended on it more today, as I could feel the tightness in my shoulders when I stopped. That slow as mud feeling is the first Parkinson’s symptom I had, so it’s looking less and less like I’ll be able to continue on just the Zelepar. The Neurologist told me I could go back on the Requip as well, if I felt like I had to. I’ve resisted, because the Requip gave me stomach troubles last time. Well, I had stomach trouble when I was on the Requip – that doesn’t automatically mean the Requip was causing it. It’s that uncertainty that has kept me trying to do without it. I’m just not ready to cope with stomach side effects yet. Maybe next week.

I taught 4th and 5th graders for 25 years, but I’ve seen the “Smarter than a Fifth Grader” TV show a couple of times since I’ve been back home. It’s scary how much my mind goes blank on stuff I know I should know. I hope it’s just remnants of caregiver burnout, and not the PD effecting my mental abilities. Stress can really do a number on such tasks, so I’m trying really hard to relax as much as I can. But getting things accomplished is part of what’s needed to lower my stress level, too, so it’s a matter of finding a balance, I guess.

I continue to be uplifted by all the loving comments. You all really are helping. Just a thought for you, if you need to send a sympathy card to someone. One of our friends included a neatly cut out copy of Daddy’s Obituary notice in their card. It was very much appreciated.

Posted in Uncategorized | Tagged care giving, Daddy, death, difficulty walking, exercise, Income tax, nausea, Parkinson's, procrastination, Requip, settling an estate, stomach, stress, walker, Zelepar | 12 Replies

All Your Wonderful Thoughts & Prayers

Day by Day with a Movement Disorder Posted on March 28, 2007 by DBMarch 28, 2007 13

There’s just no way I can begin to tell you how much I’ve appreciated all the thoughtful comments you dear friends have been leaving, just to let me know you were thinking of me, and to express your condolences.

It’s hard to know how to get started again, after so much has gone on, but I guess the best thing to do is just start ….

I’m more rested, we’re dealing with the long To Do list that is involved in closing out Daddy’s affairs, and I’ve had a birthday.

I’m still resisting changing my PD meds, as we started going to the local walking track this week. I want to give myself a chance to build back some strength through exercise and Tai Chi first. My right arm and knee are still bothering me, but I’m taking less and less pain meds, so they must be getting better.

When I said on my last post that one journey ended and another was beginning, I was referring to myself just as much as Daddy. DH and I have had someone to take care of almost constantly for the last 10 years or more. It’s strange to be able to make plans without having to take someone else’s needs into account.

I have lots to do to get back up to speed with our blogs, BLOG VILLAGE, and our online sales, but I’m not pressuring myself. I’ll get it done gradually.

I look forward to getting back to reading all your great blogs that I’ve been missing, so bear with me, as it may be awhile before you see me commenting on everyone’s posts.

Posted in Uncategorized | Tagged care giving, Daddy, death, exercise, grieving, Parkinson's, support, Tai Chi, tennis elbow | 13 Replies

Hurky Jerky Girl

Day by Day with a Movement Disorder Posted on March 17, 2007 by DBMarch 17, 2007 8

My DH saw me have a full body Parkinson’s tremor for the first time today. We’ve been around each other so little for the last few months that it took him by surprise. We’ve been taking turns during the day staying with Daddy, and I’ve been up here every night since Thanksgiving, so we really have been just passing each other. I had described one of these episodes to the Neurologist last time, and DH heard me, but seeing it is quite another thing. I think it scared him, and I’m sorry for that. For several minutes I look like I’m doing a Michael J. Fox imitation!!

It’s just that my Parkinson’s meds can’t keep up with the lack of sleep and the stress level I’m under right now. I don’t want to make changes in my PD meds, if I can help it, until this time with Daddy is over. I’d rather put up with these unexpected episodes on an occasional basis than to over medicate myself.

Daddy is very stable right now. He’s been asleep for several days now, totally unresponsive, except for some indication of pain when we are moving him to change the Depends. His urine output is low (it’s been a week since he’s had anything by mouth), so we aren’t changing him but twice a day now. The rest of the time, he’s sleeping peacefully. He’s getting morphine every 4 hours, plus a suppository twice a day with Atavan, Haldol, Benedryl, and Resperidol in it. Talk about Chill Pill!!

It’s such a blessing. If I could order up the way I would want to die, this would be it. I hope for his sake, and ours, that he continues this way to the end. DH’s Mama and Pop died fairly peacefully, but my Mama had a slow agonizing death. I’m praying that Daddy will continue the way he is now, until the end.

Posted in Uncategorized | Tagged 102 years old, care giving, death, Michael J. Fox, Parkinson's, Quality of Life, tremors | 8 Replies

Still about the Same

Day by Day with a Movement Disorder Posted on March 16, 2007 by DBMarch 16, 2007 6

I’ve called Hospice back out here twice, because he was in pain that I couldn’t resolve with the Morphine, or his breathing was worse. They’re good to come, but it takes over an hour for them to make the drive. His heart is still strong, although the body is all but shut down.

I managed to get a little sleep last night, but mostly it’s my arm keeping me awake. It’s still very swollen above the elbow and painful all the way down to my finger tips. It’s hard to say if I pulled a muscle, irritated a tendon, or if this is from the Parkinson’s. Whatever it is, I’m not helping to change Daddy now. We have the nurses and aides coming, so Fred helps them do it. Daddy’s bottom looks horrible now, but it’s to be expected, since we have quit trying to turn him. He’s just in too much pain when we have to, to put in a suppository for pain, or to change him. He’s resting peacefully almost all the time, if we just leave him alone. So I’ve opted for bed sores, rather than upsetting him every 2 hours.

Frances is here today, so I’ve left her with Daddy, and I’ve moved up to the living room to try to get some sleep. Just thought I’d jot off how things are right now, before I try to get some rest.

Posted in Uncategorized | Tagged care giving, death, decubitus ulcer, Hospice, insomnia, pain, Parkinson's | 6 Replies

Active Life = Strong Heart

Day by Day with a Movement Disorder Posted on March 15, 2007 by DBMarch 15, 2007 2
Posted in Uncategorized | Tagged care giving, death, Hospice, Quality of Life | 2 Replies

Saying Goodbye

Day by Day with a Movement Disorder Posted on March 12, 2007 by DBMarch 12, 2007 16

The Hospice nurse told me today that the nurse who stayed Saturday thought he had a heart attack that night. I had been guessing maybe two more weeks at the most, based on Daddy’s refusal to let me put anything in his mouth. She told me to be thinking more like days. I’ve said my goodbye’s, tried to finish the sentences he was struggling to get out, and he’s ready – well past ready. I didn’t have to hear the individual words to know the cadence of his “I wish this would hurry up and get over with,” as I’ve been hearing that for some time now.

Saying goodbye is never easy, but our first Hospice experience taught us that it is important. Even if you don’t think the person is aware enough to hear you, the loving words need to be said. And if they can’t respond, you need to speak out loud for them, saying what you know they would say to you if they could. Not easy.

Posted in Uncategorized | Tagged care giving, death, family, grieving, Hospice, Love, Quality of Life | 16 Replies

“I Want to Go Home Now”

Day by Day with a Movement Disorder Posted on February 27, 2007 by DBFebruary 27, 2007 16

The human mind is a fragile thing when age or the onslaught of disease takes its toll. Since we’ve already been Care Givers for my mother and DH’s father, who both had Alzheimer’s, we’ve heard many, many pitiful pleas and angry demands for us to take them “home.” My Mama was in the hospital, with me there 24 hours a day for 35 days, recovering from a broken hip and going through rehab. She never could get straight in her head where she was, but I expected things to be better once I got her back into her own home.

I was very disappointed to find that she didn’t know she was in her own home, when we did get her back there. Each day involved question after question about when we would be leaving, why wasn’t I taking her home, who were these strange people, etc. No amount of reassuring her that she was home, and that the people were her family, would appease her. At one point she was in a panic, because she was worried about her dog being alone at the house, with no one to care for him. What could I say? She was remembering the house I had grown up in, and a dog I had as a little girl. So I had to play along that Cindy was being well taken care of, and for her not to worry.

We moved Pop out of his home, and moved him in with us. So his constant requests to go home at least made sense!

But I was not prepared to have these same conversations with my Daddy! He’s old – VERY old – but has been more or less lucid most of the time, even after he fell on Thanksgiving weekend. Well, he’s been lucid about everything EXCEPT that he was still in his own home! He’s forever asking me for his cap and jacket, so we can head home.

I’ve come to the conclusion that what they all mean when they ask to go home is to go back to a time when they were in control. A time in their lives when they had privacy. A time when someone else did not pick out the clothes they would wear, or decide what they would have for lunch, or when it was bedtime. A time in their lives when they could still drive, take a walk around the block, or, in Daddy’s case, cut the grass.

As Care Givers, we can do our best to keep them safe and comfortable physically, and we can even play along with their delusions at times, but the one thing we cannot do for them is to give them back that control over their own lives that they so long for.

My Daddy will be 102 in less than two weeks. His body becomes noticeably more frail each day, his speech has become all but nonexistent over the last few days, and we can get very little nutrition or fluids down him. It frustrates him to try to talk when he can’t get the words out. He can no longer help us when we turn him in the bed. His days and nights are spent for the most part sleeping. Sure he wants to go home. Who wouldn’t want to return to a better time??

I both rejoice and am deeply grieved that he soon will be truly HOME. Seeing my dear Mama again. Walking with a full strong stride. Enjoying seeing all the wonderful sights that his blind eyes have been missing for many, many years. Hearing the angelic choir in all its glory. And I betcha he’ll be on a riding lawn mower keeping the yard cut!!!

I’m already grieving his loss. Just writing these last words has the tears flowing. But he’s lived a long life, with much to be proud of and to enjoy. It’s time for him to go home.

Posted in Uncategorized | Tagged care giving, confusion, death, family, grieving, hallucinations, Heaven, Love, nutrition, Quality of Life | 16 Replies

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

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