Tag Archives: TENS

I Over Did It

Day by Day with a Movement Disorder Posted on by 4

I’ve been going to the Physical Therapist for several weeks now, and I can see some improvement in arm strength. I have good days and bad days as far as neck and back pain go, so I’m still using the muscle relaxer and pain meds when I can’t take it any more. I’ve also gradually worked up to using the TENS unit the better part of the day now.

Just to give you an idea of how little it takes to fatigue my muscles – I’m doing 10 pulls with bent elbows of the easiest tubing, 7 without any tubing with elbows at my side moving my fists out as far as I can to the side, 10 shoulder shrugs, and 7 head turns each way. These are all held about 2 seconds each. And that’s it. The therapist doesn’t want me doing any more than that. Some workout, eh? I do that twice a day, but on some of the worst days I just didn’t feel like it was a good idea.

We’re still getting out of the house most days, not just for PT and doctor appointments, because I need to walk to keep my leg strength up. Standing and walking mean I’m holding my head up, even though I use the soft neck brace most of the time when we’re out.

Wednesday I just did too much. It’s my own fault, because I didn’t tell hubby my neck was bothering me as much as it was, so we didn’t come home as soon as we should have. I won’t make that mistake again. He and I have talked about it, and we’ve worked out a signal, so he’ll know I need to go home (that won’t upset him thinking something’s terribly wrong).

The therapist said he could definitely tell I’d over done things and told me to take it easy for the next few days. He said it’s not unusual for someone to over do when they’re beginning to feel a little better.

I’m so thankful my hubby and family are supportive. It’s sad when I read about people in the Facebook MITO groups whose families are unsympathetic. This is an invisible disease. I don’t LOOK sick, unless I’m wearing the neck brace. And that doesn’t telegraph my digestive and elimination problems, my cold and exercise intolerance, nor my memory issues.

Compared to others I’ve met online I’m very blessed to be as unaffected by my MITO as I am. I thank God for that.

Very Busy Week

Day by Day with a Movement Disorder Posted on by 2

We had quite a week this week. With two Physical Therapy appointments, a Neurology appointment, a Podiatrist appointment, and a Hygienist appointment at the dentist, we’ve been very busy. And I’m really worn out. I’ll be sure to not let the appointments end up like that again.

We go to the dentist regularly, but I’ve always had trouble keeping my mouth open wide all that time. Now I understand why, as my jaw muscles simply fatigue so much that it’s very painful. And that has set my neck into spasms in the past. I sure didn’t want that to happen right now, as painful as my neck has become.

I found out a long time ago that I could deal with any lengthy dental work better if I asked for a bite block. That wedges my mouth open without me having keep it open myself. So this time I asked for the bite block when I got my teeth cleaned, and it helped a lot.

The Hygienist said my gums were bleeding more than usual. But that didn’t surprise me, since I’m now on a rather large dose of Coenzyme Q10. It acts like Warfarin, a blood thinner. So I guess the next time I have work done, I’ll need to stop the CoQ10 ahead of time.

The Physical Therapist is spending most of my time there trying to relax my neck, shoulder, and back muscles with moist heat and the TENS unit, as well as some wonderful massages and some neck traction. As far as “exercise” I spend time in between the heat and massage sessions just “sitting”. That doesn’t sound like exercise to you I’m sure. But for me to sit unsupported with less pain in a regular chair without the neck brace is really exercise, because my neck muscles have to hold up my head all on their own. It was easier to do today than last time. So the little home exercises he gave me to do, plus what he’s doing at therapy are already helping a little.

He set my TENS unit for my current needs and gave me a diagram of where my hubby will need to put the electrode pads. Hopefully that will mean I can use the TENS unit more and depend on the muscle relaxer and pain meds less.

So I continue to do what I can to improve my situation as much as possible.

First MITO Physical Therapy Session

Day by Day with a Movement Disorder Posted on by 2

I had my first session with the Physical Therapist today since my Mitochondrial Myopathy diagnosis. I’ve been to this same PT facility many times over the years, starting back when we took my mother when she was recovering from a broken hip. She was in the full throes of Alzheimer’s at that time, and they were super kind and gentle with her. His staff have helped me personally in the past with neck pain and difficulty walking.

So I knew if I called ahead of time and asked the director to call me and discuss my diagnosis before my first appointment – I knew he would do that. He actually called me on a Saturday! He said he had had several patients over the years whose ultimate diagnosis turned out to be Mitochondrial Myopathy, but that he would catch up on the current thinking about how to help me. He seemed confident that he could improve my neck muscle strength and alleviate the referred back pain I’ve been experiencing for some months now.

He spent the better part of 2 hours with me, asking lots of questions, and I could tell that he had truly been doing considerable research about Mito. I also shared with him some of the information I have found from MitoAction, too. His overall message to me was that he could help, but everything would have to be done very simply and slowly, with only a few minimal exercises at a time.

I’m to see him again this week on Friday, and he gave me a few extremely simple exercises to do twice a day for just a few repetitions. After spending some time with a TENS unit set up at very low volume with a large heat wrap around my neck at the same time, he then did a slow and very careful massage of my neck and back.

I asked very specifically if a reasonable ultimate goal for me would be able to sit in a regular chair and then the church pew for the 2 hours that Sunday School and church require. I currently take a muscle relaxer and pain med before going to church on Sunday, and I use the padded neck brace from the time we leave our house until we ear lunch. It’s not considered safe to try to eat while in the brace, due to possible choking, besides the fact that it’s very awkward to try to do so. I’m pretty much wiped out and in pain for the rest of the day.

Right now our church sanctuary is being renovated, and I sit in a regular chair in Sunday School, but I’m sitting in a high back upholstered chair from the vestibule during the church service we now hold in our Fellowship Hall. I explained that to him, and that I had recently had occasion to sit in another church on a padded pew, wearing the neck brace, for about an hour and a half and was in severe pain by the time we left.

He did not think I would ever be able to sit without head support through both Sunday School and church, even after PT. So that means we’re going to have to make arrangements to get a wing back upholstered chair for my Sunday School classroom. Then hopefully I’ll be able to tolerate sitting in a pew for the worship service without being in so much pain.

I had hoped he would say that in time he could rehabilitate my neck so sitting would not be such a problem, but it doesn’t look like that’s going to happen. I’m glad he expects to be able to help me some. I’m thankful for that.

If you’ve read this far, I hope you’ve followed some of the links about World RARE Disease Day on Feb. 29th and found some way to spread the word about the need for more research funds. If you can donate – thank you!!

Still NO Test Results!

Day by Day with a Movement Disorder Posted on by 2

Our patience has grown very thin, but there’s not much we can do about it. I went through 3 hours of neurological tests week before last, and we still haven’t heard back from the doctor. I was already having misgivings that the doctor and I had a language barrier. So this isn’t making me any more comfortable with him.

Plus, I don’t lie flat well at all. I sleep in a recliner and have for years, so that 3 hour stint flat on the exam table, under so much stress and tension, has my neck dealing me fits. I’ve been using my TENS machine and the hot pad, plus I keep a soft neck support around my neck while I am sitting. I’ve taken more pain meds in the last week than I have in a very long time. That is very ironic, since the UAB doctor kept asking me where I was hurting…and I kept telling him I wasn’t. HUH! Now I AM!!

I do have an appointment with my own Neuro next week. Unless we hear something soon, he’s going to get an earful from us about the UAB doctor!

As for my current situation – it’s very difficult for me to walk – very slow and labored, and sitting without a neck support gets very painful. I end up propping my chin up with my arm…fist under my chin.

Choking Episode

Day by Day with a Movement Disorder Posted on by 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!!!

Still Doing Pretty Well

Day by Day with a Movement Disorder Posted on by 2

I’m still off the PD meds, and I just updated my Profile on PLM. My PDRS score, which is a way of quantifying symptoms, is better than it was a month ago. Of course it’s still a very crude way to put a score on something that really can’t be scored. If you’ve ever had to tell a nurse or doctor how you rate your pain on a 1 to 10 scale, then you know what I mean.

Church is still hard on me, as the pews are not comfortable for me now. They should be, as they have a very good cushion, but the space between pews is narrow, and the backs are hard. Turning to look at the preacher while he speaks still aggravates my neck, too.

I’ve stopped using the TEN’s until I can talk to the Physical Therapist. They told me not to put it anywhere near my heart, which makes perfect sense. But there have been several times when I would get what felt like a pulsing muscle pull where my heart is in front, when I have the electrodes near the bottom of my shoulder blade. That would put the electricity near the back side of my heart as near as I can figure. So, I’m doing without it for now.

The cervical collar and the exercises seem to be helping, at least.

I have noticed several times in the last few days that I had had a painful burning sensation at different places on my feet. When I grab the place and rub it out, the place goes numb for a little while. I’m guessing that the PD meds have been blocking some of the Peripheral Neuropathy pain that is common with that problem.

I’m in the process of checking out a new laptop I bought this weekend. It was an open box item, so I only have 14 days to be sure there is nothing wrong with it. Plus, it came from a big chain store who had put all kinds of software on it advertising their company. It even had a user with a password they hadn’t bothered to tell me about. I got around that by reinstalling the original disks. But now, I’m still uninstalling all that junk the computer manufacturer lets various software companies fill the computer with.

Most people probably pay the store to get the computer ready to use, but I enjoy the challenge. Fiddling with computers has always been enjoyable to me, but the most pleasure these days comes from the absolutely wonderful feeling hubby and I both get when we can help one of the families who have told their story on our Plush Memories Lost Toy Search Service blog find a lost lovey. And, to do that, I have to have a computer. So, to get the best thing – helping people – I get to do the next best thing – working on my computer.

So, I continue to watch how my body is behaving, and working on the computer, too.

Messing Around

Day by Day with a Movement Disorder Posted on by 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.

Pinched Nerve in Neck is the Culprit

Day by Day with a Movement Disorder Posted on by 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!

Physical Therapy Continues

Day by Day with a Movement Disorder Posted on by 6

I’ve been to a couple of PT sessions now, but all they have done so far is do the ultrasound and the TENS. My neck still gets very painful, if I have to sit for any length of time unsupported, such as at meals and at church, but already it is more flexible than it was. I see them today, Wednesday, and Friday. We went out last Friday for our Date Day after I finished the session, so I guess that’s the way we will do it for awhile.

I goofed on my medicines last week and put the Sinemet and Lodosyn in the boxes, as usual. That’s what my Neurologist told me to stop taking, and I forgot! No harm, really. But I made a big time bad mistake when I filled them this time. I put 4 diuretic pills in, where it should have been the colon relaxer pills!! I didn’t catch it until that night, when I take the last Bentyl by itself. That’s when I realized it was the wrong color pill. Makes me so mad at myself when I mess up like that. I’m just thankful I didn’t get into trouble with all that diuretic in me!!!

I started this post on Monday, but the interview I did last week about our Plush Memories Lost Toy Search Service was included in an msnbc.com article that published yesterday. So, I spent most of the day reading requests from families who are looking for lost lovies, and writing everyone to tell them about being featured in the article. I was on cloud nine all day long. We were able to connect two of our searchers with families who had the toy they needed, and were willing to give or sell it to them.

I got mixed up on the timing for my meds again, but not too badly this time. It’s just aggravating that it happens at all. I think it’s a Freud thing going on – I’m just sick and tired of all these meds, no matter how much I know I need them.

I’m tired today, too, because I stopped using the TAP for a few days, thinking that would help my neck to settle down. Of course that also means I’m not sleeping as many hours. I figure do without it one week, and if that is going to help, that would be long enough to see a difference. I will use the TAP again this weekend, or maybe next Monday, one way or the other.

The excitement of yesterday has calmed down now, but I am trying to stay upbeat, hurting neck or not.

First Physical Therapy Session

Day by Day with a Movement Disorder Posted on by 7

I went back to the same PT I have used before, and I was fortunate enough to get the same therapist. She asked lots of questions about what brought on the stiff and painful neck. She manipulated my head, and we chatted a bit about how my diagnosis got undiagnosed. I gave her the link to Patients Like Me, and I hope she takes me up on the invitation to join.

She seems to think that the electrical stimulation (TENS) and ultrasound will help these muscles relax, and she expects to do some stretching exercises on Friday. Bless her heart, but she remembered that Friday was our Date Day, and apologized for messing it up. But DH will be fine with that, as this is only for a few weeks.

We did something this afternoon we have never done before. I made a smoothie! Hubby bought me a blender for Christmas, because I had said something about wanting to try some. I mixed a banana, raw spinach, a little parsley, some soy milk, and a touch of honey, and we both tried it. It wasn’t half bad, and we both drank it all. Not bad at all for my first attempt.

It always makes me feel better when I feel like I am taking control of a situation, and getting the PT started and learning a way to improve our nutrition is a good start for one day. Yippeeee!