Tag Archives: memory

WORLD RARE DISEASE DAY is TODAY!!

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TODAY is World Rare Disease Day!

As I was recently diagnosed with Mitochondrial Myopathy, I’ve been doing a lot of personal research trying to understand a disease I had never heard of until a few months ago. We have been told by the diagnosing Neuromuscular Specialist that there is currently no cure and no real treatment available.

The main symptoms that affect my Quality of Life are extreme muscle weakness and fatigue, but I also get Myoclonic jerks, I walk with an ataxic gait, and I have digestive problems, as well as memory issues. And I have Type II Diabetes that is under control with nutrition and weight control. Diabetes is another way that Mitochondrial Disease can manifest itself. In hindsight I suspect that my symptoms probably started showing up about 30 years ago.

One in 10 Americans is affected by a rare disease – that’s over 30 million people. That’s more than the total number of people living worldwide with cancer! There are more than 7,000 diseases classified as being rare, most of which affect children. I can’t even imagine how parents must react when they are told their precious little one has a rare disease – and learn that 30% of the children diagnosed with a rare disease will die by their 5th birthday.

Most of these rare diseases are genetic in origin. There are no cures for these diseases, and only about 5% of these diseases even have a treatment. Less than half of the Rare Diseases have any kind of foundation, advocacy group, or community support group, because many of these diseases affect fewer than 100 people.

My own disease falls under the scope of the Muscular Dystrophy Association, so  I do have knowledgeable people I can turn to for help. And online there is a the United Mitochondrial Disease Foundation, as well as MitoAction and several Facebook groups dealing with MITO diseases where I can go for information and support. You’ll find me on FB in the 250+ member Mito Adults group – just ask on the group to join, if it would be a good fit for you.

So what about all the families dealing with one of these 3,000 or so Rare Diseases who have no support group at all?

You can help them:

VISIT the R.A.R.E. Project site and learn more. DONATE to help with research if you can.

LIKE and share the Global Genes Project Facebook page with your FB friends and be one of the hoped for Million who show their support for families facing one of these rare diseases.

WEAR jeans today to increase awareness of the need for more research and funding for genetic diseases. Hopefully your workplace is involved in Jeans for Genes as a MitoAction fund-raising effort today. But if not, you can still donate to these causes.

 

Jerking Has Been Much Worse

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I’ve postponed writing about the increase in my jerks and twitches over the last few months, hoping that it was due to more stress than usual and would go away on its own. But it hasn’t. I called my Neurologist about a month ago to let him know that I was getting worse, and his nurse called back to tell me to increase my dose of Primidone to 2 pills twice a day. I did that for a couple of weeks, with no help at all, so I called back. This time he said to take 3 pills twice a day. Well, that didn’t help, either.

So I called the other day to see what he’d suggest, and I went to see him today. He’s added Neurontin (Gabapentin) to my 3 at a time Primidone dose to see if that helps. He asked me if I had ever been on it, and I couldn’t remember that I had. It wasn’t until I just now did some Googling for Neurontin and Essential Myoclonus that some of my old posts on this blog popped up. I have been on it before, and I had really bad nightmare problems with it, and it didn’t help with the jerks, either. Since I will be in his office building tomorrow, while I’m there I’ll see if he wants to try something else instead.

I had shared some very disturbing to me loss of memory incidences of late, so he has scheduled an MRI for tomorrow. He also had some blood drawn to check for thyroid problems and B12 levels. I’ll probably get those results later on this week. I can’t imagine that my B12 would be low, considering what we eat, but a thyroid problem is certainly a possibility.

The jerks are nerve wracking for me and worrying my dear sweet hubby, so I pray that the added medicine will help. I pray that the blood tests and MRI will help my doctor decide what might be going on with my memory. It may just be a side effect of the very medicines that help me to have a good Quality of Life in other ways. Primidone is one of the ones I take that can cause memory problems, and I’m now on 3 times as much as I was originally taking! And the Triavil I take at night helps to keep my digestive system behaving itself. And he named one other prescription I was on that could cause memory loss, but I forgot which one he said. (ironic?)

I’m Still Losing Weight

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Well, I have exceeded my goal weight loss by several pounds, and even though I’ve quit counting calories, I’m still losing weight. It’s just as slow a weight loss as it was all those months of trying, but losing it I am. And I’ve been allowing myself the occasional milkshake or pizza, as the mood strikes, too, without regard for calories or lactose intolerance or blood glucose numbers!

I guess I’ve just gotten so used to eating less that I am still “on a diet”, even though I’m not trying. Hmmm… anyone want a milkshake?

I’ve finished reading Dan’s book, I Will Go On, and I’m in the process of re-reading the chapters I found most inspirational to me. I can’t say that I “enjoyed” the first few chapters, but the bulk of the book more than made up for the opening explanation of the various types of Parkinson’s Plus disorders. I would still recommend it as great reading for anyone dealing with PD, or any Movement Disorder, either as the one with it, or as the care giver. I didn’t find the explanations that helpful, as I’ve already read all this many times before in my own Googling, but I would think that anyone new to PD Plus would find this layman’s explanation of all the variations of severe Movement Disorders to be very useful.

I can only be thankful to God that I have a relatively mild Movement Disorder.

Hubby and I have noticed some occasional tremors in my right hand that aren’t as jerky as my foot, shoulder, and face can get at times of stress. It’s nothing to be concerned about, but worth noting, in case it becomes more frequent. I will be able to look back here and see about when we first started seeing it.

When I was first diagnosed with Parkinson’s, we bought a notebook to log any and all symptoms, doctor’s visits, meds, etc. And I kept it up religiously until after the MDS had changed the diagnosis to Essential Myoclonus and had me on Primidone, which worked wonders for me. But I’ve long since quit writing much in it, depending more on keeping track here on my blog of our war on my Type II Diabetes diagnosis. I would recommend the journal method though, for anyone with a progressive disease, such as Parkinson’s. It’s great to be able to answer the doctor’s questions about onset of symptoms by turning back in a journal to the first entry for a given situation. And it’s much easier to keep track of the side effects of meds, etc., too.

There have been some family issues that have kept me somewhat depressed and definitely more tense of late. I don’t handle my emotions as well as I used to, either, so it’s affecting me more than I would like. It’s just something I need to work on. I know that with God’s help I can meet anything that comes my way.

I recently started trying to memorize scripture verses, both as a way of drawing closer to God and to also exercise my memory. I’m picking verses that I already know in a general way, and now I’m trying to learn where they are in the Bible and learn the exact King James version of them. That’s the version I grew up with, so it’s best for me to use. I know a lot of scriptures in a paraphrased sort of way, but, with few exceptions, I never learned their location in the Bible. I regret that I did not master these verses a long time ago. I can certainly tell that my brain is not as sharp as it used to be, but I’m glad to see that I am having some success.

So here I am at this moment in time, with some successes and other situations I continue to work on. Life is good.