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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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Great News about my Diabetes!!

Day by Day with a Movement Disorder Posted on December 18, 2010 by DBOctober 22, 2019 2

My doctor is very proud of me for having an A1C of 5.5 two times in a row. That means for the last 8 months I’ve had a better sugar level than most people without diabetes! He actually said I was no longer Diabetic, and he halved my Metformin dosage. To say the least I’ve been celebrating this week, and with Christmas right around the corner I’m sure I’ll indulge more than I did last Christmas! After that, I’ll have to go back to eating more properly and checking my blood glucose levels, but for right now…we’re just celebrating.

I could never have lost and kept off the 60+ pounds over the last almost 2 years now if it hadn’t been for my dear sweet hubby, who does the grocery shopping and cooking. He’s read everything he could get his hands on ever since I was originally diagnosed with Parkinson’s way back in 2005 to be sure I eat the very best possible diet of high antioxidant Super Foods, as have I. And he checked Nutrition labels on every processed food he bought for the last 2+ years for sugar and carbs. I was determined to beat the Diabetes, if at all possible, but I wouldn’t have done it without his considerable help. And we wanted to alleviate the Movement Disorder symptoms as much as possible, too.

So here’s a great big {{{{HUG}}} to the love of my life!

As for the jerks of my current diagnosis – Essential Myoclonus, the news isn’t as good, but maybe I’m doing better than I was. The Depakote plus Primidone combination seems to work a little better than the Neurontin plus Primidone did. It just doesn’t take much to break through and send my shoulder into a jerking fit. The least bit of stress, and it can go on for what seems like hours. Like at the dentist the other day. I jerked in the chair the whole time he did a filling. I like my dentist, but I have childhood memories that have left me dealing with high stress every time I go. I’m better than I used to be, but all the jerking reminds me of how deep seated this fear is.

So hubby and I are celebrating our 50th Christmas together (if you count the years we dated or were engaged), with our family in good health. We are very thankful to God for seeing us through some rough times, but I have faith that times are going to get better.

I pray you and your family will know the Spirit of Christ during this Christmas season.

Posted in Nutrition | Tagged Christmas, Depakote, diabetes, diet, family, God, jerks, Metformin, Movement Disorder, nutrition, Primidone, Super Foods | 2 Replies

Praying the Depakote Works

Day by Day with a Movement Disorder Posted on December 3, 2010 by DBMay 17, 2016 2

I heard from my Neurologist Wednesday, and he’s trying me on Depakote, instead of the Neurontin. So far I’m not groggy, but I’m still jerking. Hopefully not as bad as I was, though. Today should be the test of it, as it’s had time to get fully into my system now. So, we’ll just wait and see. It does have some possible side effects that aren’t good, such as weight gain, so I’ll have to start weighing regularly again. And watch what I eat, too, as I had been splurging a good bit lately. But I’m not counting Thanksgiving.

It’s strange how they attempt to medicate the symptoms of Essential Myoclonus. Both of my meds, Primidone and Depakote, as well as the Neurontin he took me off of, are anti-seizure meds. But the EEG showed that I’m not having seizures. They really don’t know how these meds work for some people, and for that matter they don’t know what causes EM, either.

We had an enjoyable Date Day yesterday, going to the Galleria and walking around, mostly to see the Christmas decorations. But it’s not like it used to be. There were only token, if any, decorations in the stores, and they didn’t have a Santa in the mall, either. It’s sad to see how “politically correct” everyone’s become, but they sure want our money! But the mall itself was pretty, and the walking was good for me. And we did get some shopping done, but not at the Galleria! Hurray for “dollar stores” (I can remember when they were 10 cent stores)!!

I’ll try to get some more housework done today, and I’m praying that the Depakote works. My walking is still very unsteady, but that may be from lack of enough exercise. Might as well get a clean house while I build a few muscles, eh?

I hope you all had a wonderful Thanksgiving, as we sure did. And I’m thankful that my Neurologist does have some choices for meds to try for me. I pray that he finds the one that stops the jerking.

Thanks be to God for all his unspeakable gifts! He has blessed us in so many ways, particularly that my wonderful hubby is here by my side to help me in any way I need. I don’t know what I would do without him. I love him so much!!

I pray that you keep Christ as the center of your Christmas giving and celebrating, and that you and your family enjoy His Blessings during this holy time of year.

Posted in Medicines and Supplements | Tagged Christmas, Depakote, diet, difficulty walking, Essential Myoclonus, exercise, Friday Date Day, God, Neurontin, prayer, Primidone, weight loss | 2 Replies

Continuing to Feel Better – Had a Wonderful Christmas!

Day by Day with a Movement Disorder Posted on December 25, 2009 by DBMay 19, 2016 2

I think my stomach is finally healing, although I am still taking the meds. We enjoyed our family Christmas time yesterday, because one of our daughters had to work on Christmas. We just treated yesterday as if it were the 25th and exchanged presents and enjoyed being together.

I did the same thing I did for Thanksgiving – I did not worry about calories or glucose levels. It was a nice break from my usual diet, and I thoroughly enjoyed eating some of the forbidden foods that I love so much. My glucose numbers were high, but not really too high. I think I’m gradually resolving the diabetes problem as I continue to slowly lose weight. My target is to eat about 300 calories each day less than I actually need, which means I would lose a pound about every 10 days. I’ve been graphing my weight on Fitday.com, as well as keeping up with my calories there. That’s been a great motivational help.

I’ve not had any more problems with tics and twitching, since I added a half pill to each dose of Primidone. But I try really hard not to let myself get stressed or upset, and for the most part I’ve been successful.

We’ve had a great time helping people find their childhood lovies and backups and replacements for their children’s lovies. It’s very gratifying, and I think it has a lot to do with the great Christmas mood I’ve been in this year.

So I’m looking forward to 2010, and expecting to be in better health by this time next year!

Posted in Quality of Life | Tagged blood glucose, Christmas, family, FitDay, tics, weight loss | 2 Replies

Showing Improvement

Day by Day with a Movement Disorder Posted on December 23, 2009 by DBMay 19, 2016  

Well, I’ve been on the antibiotics and other meds that my Gastro put me on for over a week now, and I’m beginning to see some improvement. I still have problems with my tummy, but the constant feeling of nausea is gone … and good riddance!

We wrapped all the presents and filled the stockings last night, so we’re all ready to enjoy the next few days with our family. We’ll all be together this Christmas, and that always makes it extra special. Some years we have to share our daughter with her in-laws, which is only fair, but I’m glad she and her hubby will be celebrating with us this year.

We’ve had a particularly rewarding Christmas this year already, helping a large number of families find replacements for lost or bedraggled lovies for Santa to put under their Christmas trees! We’ve received wonderfully excited thank you’s from many of them, and each time one was received it just made this Christmas that much more meaningful. It can’t be said often enough that it really is more enjoyable to give than to receive!!

My hope and prayer is that you have a Christ filled Christmas this year, too!

Posted in Quality of Life | Tagged Christmas, family, Lost Toys Search Service, nausea, stomach | Leave a reply

So THAT’s Why I Wasn’t Getting Better

Day by Day with a Movement Disorder Posted on December 17, 2009 by DBMay 19, 2016  

Well, I had an endoscopy Monday morning, and the pathology report came back yesterday. I have an infection of the stomach lining – Gastritis. So now I’m on antibiotics again, and still taking the Carafate. I decided on my own to drop all the supplements for now, and just take my prescription meds – which is a lot!

I felt lousy yesterday, but I’ve waked up this morning feeling better. I’ll know when I eat breakfast in a bit if the medicine has had a chance to calm down the stomach lining any. They gave me a photo of it when I had the endoscopy, and it looks raw alright, so I can’t expect it to clear up overnight. I sure hope I feel better by Christmas, at least.

I’ve been swamped with requests for help finding lovies in time for Christmas, and I’m sure that has put some stress on me. But it feels so good to help someone find what they could not find on their own that I can’t stop. My inbox was not as full this morning, and it should start slacking off until after Christmas now, as there’s hardly enough time to get anything in time for Santa to deliver it.

I’ve been so busy on the computer, plus really not feeling up to doing any cleaning, that I haven’t put up any Christmas decorations, yet. Hopefully, I can get that done today. All the big presents for our grandchildren have been bought since Thanksgiving (online, of course), so now I need to wrap them. We still need to put some more things in everyone’s stockings, too. That takes the most time of all. All these Christmas doings that still need to be done puts stress on me, too. So I am trying my best to just go with the flow and get done what I can. There have been some years when I was wrapping on Christmas Eve, so I have time yet! LOL

We did go to my Sunday School class’s Christmas party and to the Open House at our preacher’s house for the Deacons and their family, so I’ve had a chance to party a little. I took a sugar free dessert to the party, so I could have something sweet without upsetting my glucose readings. I didn’t feel like eating much, but I enjoyed going.

So, I continue to hope that I will feel better by Christmas, and still trying to get as much done as I feel like doing for now.

Posted in Symptoms, Tests | Tagged Christmas, Gastritis, nausea, stomach | Leave a reply

Merry Christmas!!

Day by Day with a Movement Disorder Posted on December 21, 2008 by DBMay 24, 2016 9

The Christmas presents are wrapped, and the stocking presents are ready for stuffing, the house is straighter than it has been in a long time, and I’m in good spirits. Not everything is the way I would wish it to be, but I’m thankful for my improved health and the health of all our family. I pray to God daily, with confidence that things will work out for the best for our family.

My elimination difficulties are settling down somewhat, but the gas was particularly bad yesterday. It’s hard to think of eating out in public, not knowing how my body will react. Hubby and I can joke about it, but it’s extremely embarrassing even just with him. My intention is to wait until after the holidays to get back with my Gastrologist, since my normal routines and diet are disrupted so much right now. Yes, we both love fruit cake, and I had a small piece yesterday, plus a little bit of egg nog. I don’t know if that set off the bloated feeling or not, but I was not comfortable.

I’m better today, at least for now, so maybe I’ll be more careful with what I eat today and see how I do. That’s easy to say now, when I’m not hungry and there are no luscious desserts tempting me.

I’m particularly pleased with my progress with my morning exercises. When a muscle is used for awhile there is a buildup of lactic acid in the muscle fibers. This causes the pain we feel when we exercise. I was not able to do even one repetition of 10 of any of my exercises at first without tremendous cramping. Now I can do almost all of them for 2 repetitions, as long as I don’t do them in a row. So, I go through my Tai Chi form, and then repeat it all for my full 20 times each. This gives the muscles a chance to rest, but I still get the full routine in. While I’m sitting at the computer I do the same thing with my neck exercises, going through the whole routine twice so I get 20 times for each motion.

I’m still doing only 10 minutes on the mini trampoline, and still having to do little resting movements every couple of minutes. But I can get through a whole song on the radio now doing jogging motions that make me bounce all over. This should be good for my gas and digestion problems, too. Until I can “jog” for the whole 10 minutes there really is no point in staying on it any longer.

My little victories in my exercise routine would certainly seem trivial to someone in good health, but I am very proud of how far I’ve come. And I have hope that I will continue to increase my level of activity.

Yes, today is a good day.

Posted in Quality of Life | Tagged bloating, Christmas, exercise, gas, Gastroenterologist, prayer, Tai Chi | 9 Replies

Getting Better I Hope!

Day by Day with a Movement Disorder Posted on December 15, 2008 by DBMay 24, 2016 4

I’ve been faithful with the Prune Juice/Miralax cocktail every afternoon and the constipation is getting better, thank goodness. I’ve noticed just a little bit of hand jerking when I mean to single click on the computer, but not as much as I was doing it on the Neurontin. One thing I am doing differently this time is to continue to use the suppositories, even if my digestive tract is behaving itself. At least for now I am pleased with my progress with those problems.

We continue to be busy with our toy sales, and I stay busy every day trying to keep up with the Lost Toys Search Service. Ever since I changed the routine to give me more time on the requests and less on the searches themselves I have managed to stay caught up most days. That’s quite a contrast to the 60 or so requests I was behind on before I decided I had to make a change.

The Search Service is a way to help people in an unselfish way, and that positive energy helps me through most days in a good frame of mind.

The house is bit by tiny bit getting straightened back up, with a bunch more stuff going out to the garage for our next sale. We may not have pretty weather again until Spring, but with Alabama weather you just never know what you’ll get on any given day.

I never have been into Feng Shui, or however it is spelled, but I can testify that it’s easier to get work done in an uncluttered environment. So I keep chipping away at the clutter and all those piles and stashes that have taken up residence with us. Each one conquered leaves me feeling that much better about myself.

I know that some people get more depressed as the Holidays approach, but thank goodness I thoroughly enjoy each ritual and family tradition. I can’t say I enjoy shopping, but we have such a small family that there’s not much of that to do anyway. Most of our time is spent finding all kinds of odds and ends to go in everyone’s stockings, big kids’ and children’s, too. And the wonderful music is the best of all.

I look forward to being with all our family at our grandchildren’s house this year, as always. Just thinking about it makes me smile.

Posted in Quality of Life | Tagged Bowel Retraining, Christmas, family, house cleaning, Lost Toys Search Service, Miralax | 4 Replies

Less Computer Time = Getting other things done!

Day by Day with a Movement Disorder Posted on December 28, 2007 by DBJune 1, 2017 15

Well, I have pretty much stuck to my intention to stay away from places where PWP are describing their symptoms. I have visited the PLM site a few times, and even made a few comments, but I have been cautious about the type of posts I opened, to avoid reading about anything tremor related. I have not done any research on PD, either, other than to try to find a correlation between heavy steroid use with Parkinson’s. This was not for my benefit, but for one of my readers, who asked some interesting questions.

My neck continues to be very stiff and painful, but I can put up with it, knowing I will be getting help next week when I start Physical Therapy.

I am pretty much caught up with posting requests for help on the Plush Memories Lost Toys Search Service, and we are over the Christmas rush on eBay. I still need to put a new post on our Yesterday’s Memories blog, and there is always work to do on the BLOG VILLAGE TopList that I run.

So, I have been getting some much needed house clutter cleaning done, but there is plenty more that needs to be done. I would like to have the house straight for the New Year. At least it can start that way LOL.

We did have a great Christmas, seeing all of our family all at once, and enjoying being with our grandchildren. It looks like we actually managed to buy them some things they will enjoy, and that’s not easy to do when they hit those preteen and teen years. They all have birthdays right after Christmas, so we will be seeing them again real soon, too.

Hubby gave me a blender for Christmas, so now I can learn how to make Raw Foods Smoothies, something I have been wanting to try for some time now. Jackie, from The Vegan Diet, clued me into The Raw Food Coach, and since we eat a lot of raw foods, anyway, I have been learning as much as I can about what foods are the best for me. I have been doing a lot of research on the high anti-oxidant Super Foods, and we are gradually changing our diet to include lots of them daily.

We have had a lot of fun at our house of late with trying to get our very spoiled (neurotic) inside cat to accept our two outside cats as occasional inside visitors. They are too young to leave outside all night when it is freezing, so we bought a pet cage for them. They don’t mind being in it at all, which surprised us, but it sure makes going out of town easier. We keep our inside cat in the hall bathroom when we are gone, and now we can keep the outside cats protected, too. Our only problem is that Miss Queen Fluffy doesn’t like having them inside. There have been quite a few fights between Fluffy and Mr. Salt. Miss Pepper stays out of the rough stuff, as she has some kind of nerve damage to one of her hind legs. She is the main reason we decided to bring them in on cold nights and when we are out of town. Fluffy surprised us last night and behaved the whole time they were in the house. Maybe she’s finally adjusting to them, I hope.

One of my anonymous readers has given me a clue as to what my diagnosis might be, if it’s not Parkinson’s. So, I have started doing some research on Dystonia. Also, there was a new post today on PLM discussing Ataxia, and that sounds familiar, too. I already feel better, knowing that there are other conditions that my symptoms seem to fit. It makes me feel less like this is all going to turn out to be psychosomatic. I can’t bear the thought that my body has been going through all this due to an emotional problem. With other possibilities in sight, I am in a much better frame of mind than I was yesterday, thank goodness. So, Marion, the glass is looking more and more like it’s half full, again.

As always, I appreciate your prayers and concern, and love to hear from you, even if it’s just to say HI!

Posted in Uncategorized | Tagged Ataxia, cats, Christmas, diagnosis, difficulty walking, Dystonia, family, hope, house cleaning, muscle spasms, nutrition, pain, Parkinson's, PatientsLikeMe, psychosomatic, symptoms, tremors | 15 Replies

Doing Without PD Meds Today

Day by Day with a Movement Disorder Posted on December 22, 2007 by DBDecember 22, 2007  

I just have to answer this one for myself, before I drive myself crazy. I didn’t take my last PD med last night, and I haven’t had any this morning. It will take awhile for the meds to flush out of my system, but I need to know what I look like without them. It’s just like most of the meds you see advertised on TV. Take this pill to stop twitching, but oh, by the way, this pill can cause twitching!!! So, if I didn’t need them, they would give me the same symptoms as someone who did need them. Like I said, my brain is going around in circles over this, so I may not be making good sense right now.

I’m going to be in the house all day today, and I wanted to settle my mind on this before it was Christmas. It wouldn’t do me any good to try to wait until after the New Year to experiment, because I start physical therapy for my neck on Jan. 2, and I sure wouldn’t want to be playing around with my dosages then.

Of course I am still on all the other meds I take, for my digestive system, allergies, and bone density, plus the vitamins and herbs for general health and anti-oxidant benefits. Who knows, maybe that’s all I need to be on, anyway. I hope to find out with this little experiment.

We will be spending time with our older daughter and son-in-law here in town Christmas Eve, and then we’ll drive to our younger daughter’s home to spend with our grandchildren and her hubby. Then, a few days later, we’ll be driving back for our grandson’s birthday.

I don’t want this nagging doubt hanging over me. I want to enjoy this family time, and the celebration of the birth of Jesus, without obsessing over this, the way I have the last few days. So, it’s do without today, and maybe tomorrow, too, or wait until February or so. And I just emotionally can’t wait that long. Did I say that patience is not one of my virtues?

Posted in Uncategorized | Tagged Christmas, emotional lability, family, prescriptions, Quality of Life, stress, symptoms | Leave a reply

Life Goes ON

Day by Day with a Movement Disorder Posted on December 21, 2007 by DBDecember 21, 2007 4

My Physical Therapy office called yesterday, and the appointment is set for Jan.2, so that’s taken care of. I have been scouring the Internet, looking for some indication of the meaning of some of the neurological tests my Neuro did on me in his office the other day, but still not having any luck. I think I will end up calling his nurse, and see if she can help me understand what happened. We were both just in shock, I think, in his office, and I didn’t ask enough questions. Now I could kick myself for not asking dozens!!

Also, I am wondering if I should try to wean myself off of the meds he left me on, before I see the MDS in April. And I also need to ask if there are any tests that my Neuro should be scheduling before then, too. When I first went to Dr. S, he was less than pleased to see that the Peripheral Neuropathy tests I had already had were only on my legs. They did not test my arms. So it would seem logical to me to have that workup done again, but more thoroughly, sometime close to my appointment in April. Otherwise, I can just see it now. I’ll go in and talk to this fellow, walk, and get poked and prodded, and then he will order a bunch of tests, and I won’t see him again for another 4 months. This NOT KNOWING could last the better part of a year, if that’s the way it plays out.

I have been blessed with so many wonderful net friends showing their support and concern over all these mixed up feelings I am having. It’s humbling to know that all of you are out there, praying for me. With all that love coming my way, and God’s help, I am already beginning to ease out of the horrible funk this news put me in. I can choose to believe I have something worse than PD, or not. I choose NOT, doggonit!!

So, another Friday has rolled around. It feels a little different, with this uncertainty surrounding us, but we will find something enjoyable to do today, and life will go on. Our Christmas stocking gift hunt is finally ended, and it’s time to wrap the presents for the grandkids, and our children, too. I haven’t looked yet to see if there are any Estate Sales today, but I kind of doubt it. Who knows, we might go see another movie.

We enjoyed “Perfect Holiday” last week, as a light, entertaining, feel good movie, regardless of what the critics had to say about it. And we’ll probably end up seeing “Legion” today, even though the critics have panned it, too. Not every movie has to be Academy Award quality to be enjoyed, right? Although I am a little surprised that Will Smith allowed himself to be in a movie that was less than box office hit quality. From what I’ve read, it’s the Zombies that are so poorly done, not his performance. And there are some flaws with the premise of the story, too, which is what makes Science Fiction work as a genre. Once you have decided to “believe” in a certain situation, the rest of the story must stay true to that premise. From what the critics say, this one does not, and that’s a pity. But, flaws and all, I am sure I will enjoy it, as I really like his acting, and I am a Science Fiction buff from way back.

So our lives move along, and I will try to let go of these nagging thoughts, and look on the bright side of it all. I look forward to spending time with our family on Christmas Eve and Christmas Day, and not think beyond that for now. Here’s wishing you all a very happy Christmas time with your families, too!

Posted in Uncategorized | Tagged Christmas, diagnosis, difficulty walking, Friday Date Day, God, hope, Neurologist, peripheral neuropathy, Physical Therapy, psychosomatic, tests | 4 Replies

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