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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: cervical collar

My Open Muscle Biopsy Experience

Day by Day with a Movement Disorder Posted on December 17, 2011 by DBMay 18, 2016 7

I had my muscle biopsy last Thursday after what seemed like an eternity of waiting for the appointment to finally come. It turned out to be in my deltoid muscle, not my leg, which suited me just fine, considering how difficult walking is for me already. They numbed me up with Novacaine so I couldn’t feel anything, and since it was right near my shoulder I really couldn’t see what the doctor was doing, either.

The doctor, whom I had found so difficult to understand when we saw him back in October, did the biopsy, and he and I chatted quite a bit during the hour plus procedure. I’m glad he was the one who did it, because it gave me a chance to develop some rapport with him and get used to his speech. I feel MUCH better about having him as my doctor at UAB now.

I told him about how much pain my neck had been giving me since the 3 hours of lying flat during all the tests in November, and he gave me a prescription for a muscle relaxer that has helped a lot. As weak as my muscles are it never occurred to me to ask for such a prescription, but I’m glad he offered it! I’m still using the cervical collar while in the car and when I’ll be out of the house for extended periods of time, but my neck and back are definitely less painful at home.

I was pleased that he had been impressed with my complete medical history printout I gave him back in October.

We have had extensive experience as care givers for our parents, and we learned quickly that doctor’s appointments were much more productive if I brought complete and easy to read information to each appointment.

So as soon as I was diagnosed with Parkinson’s back in 2006, I started keeping a journal and also created a Word document in table form detailing all my medical history from birth to the present. Thank goodness I had copies of our life insurance application forms, or I would never have been able to resurrect all the dates of my surgeries and life events. It’s very easy to update the document with any new test results, prescriptions, drug reactions, etc. So I print out a new copy each time I go to a doctor and always give them the front sheet with the most pertinent information on it. If they need a full current copy I have that for them, too.

I had done a good bit of online research about how the biopsy would be done, but somehow I didn’t realize just how big a sample they would be taking out. I had an open biopsy, rather than a needle biopsy. He took a piece of muscle tissue from my upper arm about the size of the last knuckle of my little finger. I was able to keep my knees bent the whole time, so I didn’t end up with as much back pain as I did last time.

Since I’m diabetic I have to wait 10 days to have the stitches removed. I was sent home with antibiotics to take, as well as pain meds. And I really was in a great deal of pain, which surprised me, too. I guess if I had realized what a big hunk of me he was going to take out I would have realized I was going to be very uncomfortable. I’ve been off prescription pain meds for several days now, but still use Tylenol sometimes.

I was also surprised by how little I was able to use my arm – almost nothing at first, but still difficult even now after 8 days. I’ve pretty much lived in sweat pants now since the biopsy, even wearing them when we go out Christmas shopping. I had no choice. The first trip out after the biopsy to get a sandwich and do a small amount of shopping I didn’t stop to think and wore my elastic waist jeans, as I normally do. That was stupid, because hubby had to help me get INTO them.

Well, I had to use the restroom while we were out – and I couldn’t pull my pants down one handed! I’ve done my share of going into the bathroom with my father-in-law, who had Alzheimer’s, but this was the first time someone ever had to go in a public bathroom to help ME. Hubby helped me of course, but he understandably wasn’t comfortable being in the women’s restroom, even though we made sure it was empty. It really makes you appreciate businesses that provide Family Restrooms for situations such as this.

I was told not to lift anything heavier than a plate of food. I’ve learned to do a lot of things left handed and am gradually using my right arm more and more. Hopefully when the stitches are out and the heavy bandage is gone I will be able to quickly get full range of motion back.

As for test results – it will take 3 weeks to get that back, so we’ll just enjoy Christmas and possibly New Years before we hear the results.

This is an expensive invasive test that is not performed if there is any other way to obtain a diagnosis, but I’m glad I decided to have it done. I’ve said it many times while my diagnoses kept changing that I can deal with the Devil I know much better than I can the Unknown.

If you’ve read this far it may be because you are considering having a muscle biopsy. I pray that you get definitive results that will help your medical team provide a beneficial treatment regimen for you. And we pray for that for me as well, that the Neuromuscular Specialist will be able to determine what type of Myopathy I have. We are praying that it will be one of the types for which a treatment has been developed.

May you have a Blessed Christmas!

Posted in Tests | Tagged care giving, cervical collar, diabetes, diagnosis, difficulty walking, handicap accessible, medical history, muscle biopsy, Myopathy, pain | 7 Replies

Choking Episode

Day by Day with a Movement Disorder Posted on February 6, 2008 by DBFebruary 6, 2008 8

I’m still feeling remarkably well, considering it’s been weeks now since I took a PD med. Reading a post on PLM makes me think it’s at least in part due to the 6-8 cups of green tea I’m drinking most days. Taking the Turmeric and eating a lot of the Super Foods, mostly raw, probably has a lot to do with it, too.

I’m doing my neck exercises each morning, using the cervical collar daily for about 15 minutes, and using the TENS when I need it, so I’m not hurting much, either.

But I did have another choking episode this morning. It’s a little hard to explain. I’ve done it several times lately with my own saliva, but this morning I had a mouth full of tea when a tiny amount just slipped down the wrong way. I wasn’t really swallowing, either. That’s what has been happening with saliva, too. I may not know how it’s happening, but I sure know the results! I end up coughing and gagging for several minutes each time, and it hurts. I’m going to have to try to figure out exactly what is happening, so I can decide the best way to prevent it.

Other than that, I’m feeling fine. I worked really hard on our collectibles and toy inventory yesterday, and pretty well wore myself out, trying to get it stored in a more logical and organized way. But it was good exercise, and I’m glad I was able to do it. I also added another pile to the lasagna compost. That is slowly building up an area of rich material about 100 square feet or so and over a foot high. I haven’t done any walking or Tai Chi for some time, and I do need to get back to it, now that I’m feeling better.

There was a good explanation of voice exercises on PLM, too, so I guess I’ll try to add those exercises to my daily routine, too.

And, to finish this post on a positive note, neither one of us have a single doctor’s appointment this whole month!!!

Posted in Uncategorized | Tagged appointments, cervical collar, choking, exercise, facial exercises, nutrition, Quality of Life, swallowing, TENS | 8 Replies

Messing Around

Day by Day with a Movement Disorder Posted on January 30, 2008 by DBMay 7, 2016 4

Well, I went to the Dermatologist Monday, and other than a small flareup of my Acne Rosacea, he didn’t find anything worrisome. He did say I had some sun damage on my forearms … But I’ve had almost 65 years to accumulate that damage, so it’s not really surprising. I did the sunbathing stuff in high school and college, but that’s just about it. I did have some pretty bad sunburns during that time period. Of course, there were no sunscreens then.

I’m finding the cervical collar to be very helpful, but it hurts to wear it. I’ve made about all the adjustments that I can to make it work better on my short neck, but it is still uncomfortable. Let’s face it — I have a small face and CPAP and Collars were just not meant for someone my size. It’s a shame my hips and tummy haven’t figured out they are supposed to be petite, too! LOL

I’m not getting as much use from the TEN’s as I thought I would, because it’s trouble to hook it all up. That old apathy thing going on again. I need to get in the habit of putting it on before I eat lunch or ride in the car. Those seem to be my worst triggers for pain. It’s the leaning forward with no support posture that makes mealtimes hurt. For breakfast and supper, I’m usually on the computer on the sofa, with the laptop in my lap, eating in between typing. Yes, my keyboard needs cleaning out something terrible, but I don’t know how.

I’ll try to do better by the TEN’s today. It’s rented for one month, and then, if I think it helped, insurance will pay for it. Seems fair enough to me.

I got just plain disgusted the other day, and told hubby I’m going to go off of all my PD meds for awhile, just to see how I do. I made a short experiment with that right around Christmas, but the holidays weren’t really a good time to be experimenting, so it was a very, very short time that I was without the meds. I intend to stick this out for at least a week, maybe longer. I just want to see once and for all if the meds are doing me any good at all.

I worked hard all day yesterday getting more of our plush animals and dolls into our own Dirty Butter Plush Animal Shoppe, so I can more easily sell directly. I’ll still be on eBay, but I need to wean away from depending on that source completely for sales. EBay messes with things too much, and changes things at a whim. At least with my own site, I know exactly what’s going on. Course, right now, not much IS going on!

I started working on tax forms I have to fill out for the paid caregiver we had with Daddy. Once I do all his taxes, and the Estate’s taxes, and pay what is owed to the IRS, we can close out the Estate bank account, and invest the money. It will be good to see the end of that chapter of my life.

Hubby continues to be supportive and helpful, I feel better, I don’t have any signs of skin cancers, and I’m accomplishing something with our sales. I’d say that’s a pretty good sign that the apathy is lifting. I sure hope so.

Posted in Uncategorized | Tagged Acne Rosacea, apathy, cervical collar, Dermatologist, Income tax, settling an estate, skin cancer, TENS | 4 Replies

Pinched Nerve in Neck is the Culprit

Day by Day with a Movement Disorder Posted on January 23, 2008 by DBJanuary 23, 2008 4

I went back to the Orthopedist yesterday for the follow up on the Physical Therapy I’ve been getting. He says I have a pinched nerved on the left side from a bulging disk. It’s all part of the Degenerative Disk Disease problem I have with several different cervical and lumbar vertebrae. Anyway, since I cannot have epidurals, he is making arrangements for me to see a Physiatrist at the Lakeshore Rehab Facility. This place is a Paralympics training facility and very highly thought of. It will take several weeks before I even get the appointment, as the doctor evaluates all the info my Ortho sends him, before he decides IF he will see me or not! Talk about a busy doctor!!! So, it’s hard to say who I will see first, the Physiatrist, or the MDS at UAB. Either way, I’ll be getting help from some extremely well thought of doctors, and for that I am very grateful.

In the meantime, he gave me a prescription for the Home TEN’s, which my PT facility can fill tomorrow. And he also sent me home with an inflatable cervical collar that provides traction. It’s not at all comfortable, as I have a very short neck. Even the small size seems too big to me. I’m to take it to PT tomorrow, so they can help me learn how to use it correctly. Then maybe it won’t be so uncomfortable. The directions say to inflate it for 10 or 15 seconds, deflate, then inflate again, for the first week, leaving it on for no more than about 15 minutes. Then I gradually work up to a steady 15 minute session with it.

The PT also told me the other day to make the neck exercises a consistent part of my daily routine, whether they seemed to be helping or not. He said it could be months before I really saw improvement, but to continue indefinitely with the routine they gave me. They’re easy enough to do, so it’s just getting it to be part of my day’s routine that remains to be accomplished.

So, another piece of the puzzle has been explained, and now I wait to see the Physiatrist for an evaluation, as well as the MDS at UAB. Looks like this is going to be an interesting year, and I choose to believe it will be a year where I get help with my pain, stiffness, and walking problems. Who knows, maybe I’ll even stop shaking!

Posted in Uncategorized | Tagged cervical collar, Degenerative Disk Disease, herniated disk, Lakeshore Rehab Facility, muscle spasms, Orthopedist, pain, Physiatrist, Physical Therapy, Quality of Life, TENS, traction | 4 Replies

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