Tag Archives: Physical Therapy

Post Physical Therapy

Posted on by May 10, 2016  

I’ve just graduated from Physical Therapy for my neck. I hadn’t planned on having PT after this particular operation, as my internet research seemed to indicate it was not a normal progression of healing with neck vertebrae fusion. But I had one bundle of muscles at the very base of my skull that just refused to relax. After all, they had been in spasms for years now, and were very happy continuing to cause me pain.

So my surgeon suggested PT. When I started, it was all I could do to get 20 pulls on the weakest yellow Theraband tubing. By the time I graduated this week I could do 40 pulls on the green tubing (red had gotten too easy). Of course I have to rest in between sets of 10 to give my muscles a chance to recover, but I was pleased with the improvement. They spent about 15 minutes of each session doing some rigorous massaging on my neck, trying to release the muscles. I even had one acupuncture session.

The last day’s massage did not hurt as much as the others had, so hopefully that spasm is beginning to release.

I have not been on any muscle relaxers now for about two weeks. I do get pretty uncomfortable in the late afternoon, but the new prescription was giving me problems, so I quit taking it. It’s ironic that Medicare made me stop using Methacarbamol, because “it would make me sleepy and at my age that increased the danger of falling”. HAH! The new one that’s supposed to be safe for me almost makes me Narcoleptic!!! I drop off to sleep out of nowhere when I try to use it. Will certainly be getting that prescription changed when I see my Primary next month.

Pain Level Better

I can’t complain about my pain level, as it’s SO much less than I had dealt with for years. By comparison this is like having a mosquito bite instead of being covered in huge poison ivy blisters!

Now I just have to be disciplined to continue exercising at home. We have plenty of Theraband lengths in all the colors, as well as weights from one pound and up. I had just started using two pound weights for a few PT exercises. I won’t be scared to do stuff now that I have been able to do supervised exercises.

I’m very thankful for my improvement and praise God for my bone and muscle healing.

Still on LCHF Lifestyle – Still Dealing with MITO

Posted on by May 8, 2016 2

I’m continuing on with the Low Carb High Fat lifestyle and finding it very easy now to comply with the no grain, no below ground vegetables, and no legumes or beans other than green beans.

I’m using an easy to make dessert that satisfies my chocolate craving and a no wheat egg bread recipe that cooks in the microwave oven in less than 2 minutes. Those two recipes alone are probably responsible for keeping me on this diet.

My eyes are better, but still not back to normal. My eye doctor really doesn’t think the change in diet is at fault, as tears are made of lipids (fats), and I’m certainly getting plenty of good Medium Chain Triglycerides in the Coconut Oil I consume daily.

He would normally prescribe steroid drops at this point, or Restasis. But we’re both reluctant to do that, because of my Mitochondrial Myopathy. So he’s recommended hot compresses twice a day and massaging the lids with a water and baby shampoo solution. The hope is that my tear glands will start producing more tears due to the stimulation.

I am losing weight for sure, and I’ve only felt hunger a few times since I started this diet in earnest in mid January. The first couple of weeks in January were spent gradually changing over and using up the food that was already in the house.

The digestion issues resolved themselves, as I had hoped they would. I do take MiraLax every morning, but I’ve been doing that for many years. My digestive system muscles are weaker than normal, thanks to the MITO, so dealing with constipation is par for the course.

I did have an upsetting situation develop in church today. We’re having some kind of short in our sound system that has caused me to go into Myoclonic jerks the last few weeks. But it seemed like today there were more sudden high squeaks from the organ and more crackling sounds out of nowhere that just set me off. By the time the service was ending I was in full Myoclonus and crying. Everyone nearby came to find out if I was OK, but all I could tell them was that I was OK, but the genetic disorder I have makes me have a hyper startle reflex.

I really appreciate their concern, but it embarrasses me when I go into one of these “fits”. The more I try to stop the jerking, the worse they get. I just have to find a way to relax and wait them out. It’s been some time since I had this much trouble with the jerking, but the constant pain I’ve been in for months now probably contributes to my tolerance level for unexpected noise being way down low.

So I continue to have muscle issues and other odd problems caused or exacerbated by MITO, but I’m also working hard to find the right combination of diet and activity to maximize my quality of life. I have been reading every book on nutrition I can get my hands on for several years now and continue to do so. And I’m currently going to physical therapy twice a week, hoping to strengthen the muscles in my neck, back, and shoulders and alleviate my pain.

Doing What I Can

Posted on by May 9, 2016 2

I’ve had my final Physical Therapy session for my neck. I’m definitely not hurting as much as I was before going to him, but I still have a lot of pain after doing certain things and by the end of the day.

I end up in considerable pain by the end of every meal, because I have to take off the neck brace. It’s too easy to choke with one on. I can’t ride in a car for more than a few miles without beginning to spasm, even with the neck brace. Hubby had a brainstorm the other day, so we bought one of those egg crate mattress toppers. We cut a piece to fit inside a pillow case, and we now have that in the passenger seat, so my back and neck are more cushioned from road vibration.

We moved a recliner into my Sunday School classroom, so I can hopefully get to a point that I can sit there on Sunday mornings without having to use the neck brace. I didn’t make it all the way through without the brace last Sunday, but it was a start.

We’re scheduled to move back into the sanctuary on April 1, so I have a few more weeks of exercise before I have to deal with sitting in a pew without the support of a high back. That’s still my goal – that I will be able to sit in the pew with the neck brace on all the way through the worship service. But if I have to lie down in the pew before the end of the service, I will. I’m not going to let this disease keep me from going to church!

As I understand it, they do the muscle biopsy in a muscle that is not severely weakened yet, which certainly explains why mine was done in my Deltoid arm muscle. The Physical Therapist gave me some leg exercises to gradually work on here at home, and I was shocked to find that my legs are as weak as they are. The hardest exercise for me is to lie on the bed with my toes pointed straight up and one leg bent. I’m supposed to pick up the straight leg 10 times. I can get my heel off the bed a little, but not enough to clear my calf away from the mattress. So it’s now pretty obvious why walking is so hard for me. Hopefully, if I’m careful to work on this just a tiny bit each day, I can improve my leg strength over time.

I’m continuing to take a meal’s worth of vitamins and supplements at meals and in between snack times – many of them are part of what’s called a Mito Cocktail, and we’re very careful to eat as many Super Foods a day as we can.

I’m drinking about 90 ounces of water or green tea sweetened with Stevia every day, as staying hydrated is very important. I’ve also started keeping a small hot pad in the small of my back set to the lowest heat – as any energy I use up staying warm is energy I don’t have for my muscle, brain, heart, and digestive system cells.

I have a follow up appointment tomorrow with the same UAB doctor who diagnosed my Mitochondrial Myopathy. I have a LONG list of questions for him, so we’re praying we get some answers.

I Over Did It

Posted on by May 9, 2016 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

Posted on by May 9, 2016 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

Posted on by November 20, 2016 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!!

Diabetes Doc Says I’m Doing Just Fine

Posted on by May 21, 2016  

Well, my doctor was not at all upset by my numbers yesterday. He says as long as my A1C is as low as it is there’s nothing to be concerned about. So hubby and I are just going to have to put up with the sporadic high numbers.

A1C is a blood test that takes just a few minutes to get the results on. Any time my blood sugar goes too high some of my red blood cells are altered by the extra glucose in the blood stream. This change is not reversible. So, until those blood cells die in a couple of months or so, these changed blood cells are floating around in my veins and arteries. The A1C test measures the percentage of blood that has this glucose marker on it. Mine was 5.5 the first time I had it taken, 5.6 the second, and now 5.7 this third time. Those numbers are very good. Anything below 7 is good for a Diabetic, so I have a long way to go before he’s going to worry about me.

I did get my flu shot while I was there. That’s the regular flu shot. I asked the nurse when they expected to get the Swine Flu vaccine in, and she said they’re not going to get it. I’m glad. This batch was just hurried up too much for me to feel comfortable taking it. I would have, though, if he had recommended it, since diabetes is one of the factors that makes a person susceptible. Older people are not supposed to be prone to catch the Swine Flu, since we were exposed to a similar flu some years ago.

I’ve only had the flu once in my life, and I sure don’t want it again. So, I’m glad our church has put antiseptic foam pump bottles all over the place and is encouraging everyone to use them.

I don’t see my doctor again for 3 months, and maybe this time I can actually stop stressing over my numbers. I’m going to try, that’s for sure. The funny thing is when I took my glucose level 2 hours after eating lunch yesterday I got the highest reading I’ve ever gotten. I did have a small piece of carrot cake without the icing, but everything else I ate should have been OK. Of course “should have been” and “really was OK” may have been entirely different.

I did all my exercises and stretching today. They told me to try to stretch out my left leg, which has been hurting for several months now. I thought at first it was arthritis in my knee that was flaring up from exercising. But as it got worse I realized the pain is on the back side of the knee, not the front. The PT felt around and said it was all very tight, and gave me a stretching exercise to try to loosen it up. That’s the Myoclonus acting up for sure, as my left leg does a lot more jerking than the right one does.

I’ve been sitting with a hot pad under my knee this afternoon, trying to calm the muscle down a bit. Since it hurts so much, hubby and I have decided I should exercise every other day for awhile and see how that does.

So, I’m to stop fretting over my numbers, but keep testing as I have been. That’s a tall order for me, but I will do my best to let go of the anxiety I feel when the number is higher than my target number. And as I get back on a regular exercise routine that should help to lower my numbers, too.

It’s all about keeping a positive attitude.

Blood Glucose Test Numbers are Still Jumping All Over the Place

Posted on by May 21, 2016  

The title says it all. I am not getting consistent numbers on my blood glucose test numbers at all. Many nights it comes back in range, only to have the next morning be high. Often I can’t think of a thing I’ve eaten that would make the numbers go too high, but they do anyway. The most glaring example lately was while we were traveling, and I had a grilled pork chop and 2 scrambled eggs. That’s all. No toast or grits or any carb at all, and had one of the highest readings I’ve had so far.

So, I’ve made an appointment with my Diabetes doctor for next week. I wasn’t scheduled to see him until November, and I just couldn’t wait that long.

I did have my last Physical Therapy session yesterday. I’ve got a pretty good exercise routine now, if I can just make myself do it. I’ve been so down about the testing numbers that I’ve not been exercising as much as I should. I’ll have to do better, for sure.

I had a strange morning this morning … up to my old ways … been up since 3:30AM. Don’t know what happened, but I woke up wide awake and couldn’t get back to sleep.

That’s all I have for today … just discouraged right now.

I’ve Been Trying, Honest!!

Posted on by May 24, 2016  

Yes, I’ve been trying very hard to stick to the exercise routine the PT set out for me, and I’ve done it in the mornings almost every day. But I’ve been nowhere near as good at getting the afternoon set done. I don’t quite know how to describe the weak feeling I get some days. Sometimes I wake up feeling that way, and on other days it progresses as the day goes on. Whatever is causing it leaves me just limp as a rag.

I’ve been wondering if maybe the stomach ulcers are acting up again, as I always feel hungry when I’m weak like that, even though I may have just finished a meal. The only other thing I can think of, other than the probable Primidone side effects, is that I’m having some kind of heart trouble. I do know even the least amount of exertion leaves me breathing hard. Well, to be completely honest with myself, it’s likely because I’m about 50 pounds over weight. Somewhere in the mix of all those possibilities is the answer.

I’ve gone back to eating something with each medicine dose, which should help with the ulcer and hunger possibilities, but I am trying to eat fruit, instead of bagels. I had thought a bite or two of a bagel would protect my stomach from the meds, but by the end of the day I’m adding over 300 calories in just one bagel. So we’ll see how half an apple does for awhile. It should help with the constipation, anyway, as apples are high in fiber.

I’m in good shape keeping up with the new requests for help on our Lost Toys Search Service, but I’m way behind on getting lovey duplicates we have already listed put in the correct storage box. I can hardly move in one bedroom, thanks to all the plush toys in there.

I still have bouts of really bad brain fog at night when I get really tired. I start each day with so much hope, but seem to end many days exhausted, even though I have done little physically.

We do get wonderful reunion stories from people we have helped, and that always lifts my spirits. And Spring is here in full force now in Alabama, even though we had a significant snow fall just a few weeks ago. Hopefully the pretty weather will help to get me more energized.

It’s Supposed to Take 21 Days to Make a Habit …

Posted on by May 24, 2016 2

I’ve been working really hard to get some habits going in my life that I can do without having to think about them so much. I’m doing my morning breakfast, dish washing, tooth brushing and mouth wash gurgling, and putting lotion on my hands in exactly the same order every day. That may sound like a dumb thing for a 65 year old to be practicing, but it’s something I have to think about each day, or I forget to do half of it. I’m not ready to make a list and post it, so I’m hoping by doing them in the same order each day I can turn the whole routine into a habit.

I’ve been very faithful to do the exercise sets that the Physical Therapist planned out for me. Now for that, I did make a list, and I check each time to see what the next step is. No, I can’t remember them all if I leave it up to memory, so the list is necessary. I’m not going to bother to try to memorize it anyway, because he will be changing it near the end of March.

I’m still trying to find a good substitute for the 10 minutes I’m supposed to spend on the exercise bike. On pretty days I can walk around the house a few extra times and make up for it. On rainy or raw cold days (hey, we had SNOW on Sunday!) I’ve been walking around inside the house, but I doubt if I am doing as much inside as I would outside.

Our driveway goes from the front around to the side of the house, where a sidewalk connects to the patio along the whole back side of the house. And there’s a sidewalk from there all the way back around to the front of the house. So I have a ready made “track” that I can walk on, without having to worry about traffic. Plus, the slope from front to back of our lot gives me a chance to walk up and down hill, too.

I’m wearing a pedometer and recording my number of steps each day. I figure I’ll average them together from this week and try to beat that average from now on.

My mood has been good, and I’m feeling confident that I can improve my mobility and stamina. I still spend the majority of my day working at the computer, trying to stay caught up with our Lost Toys Search Service and taking care of our online sales. I’ve had to slack off on adding to our catalog momentarily, as I got behind on requests for help when we went to Huntsville a couple of weeks ago. It’s kind of a two steps forward and one step back kind of thing, as I get new requests constantly, while I am trying to take care of the old requests. But it feels so good to be able to help people when they are so miserable that the Toy Search has a lot to do with my being upbeat. I wouldn’t want to stop it, no matter how much of my time it takes. It’s certainly a better use of my time than watching TV!!