Hyponatremia and Central Pontine Myelinolysis

What is hyponatremia? Information regarding CPM and EPM.

Archive for the category “Life with CPM/EPM”

Therapy:

Recently, and by that I mean back in April, I think, I was told by my neurologist that you don’t stop recovering from a brain injury.

He said that there used to be a notion that recovery happens only during the first two years post brain injury. He said that isn’t true. He said, recovery can continue to occur post two years.

I don’t know.

I can’t say that I have seen monumental gains or even noticeable gains. However, I am doing more than I did two years ago.

There came a point about 2 to 2 1/2 years ago when I was busy watching everyone else live their life, and I was spending my days on the couch trying to figure out what to do with my life. I’m sure you are probably doing the same, if you haven’t already moved beyond that point.

I would spend a lot of my time surfing social media, FB, and I was so envious of all of my friends and family that were living lives without a brain injury. They were going on vacation. They were participating in 5k’s, marathons, or even triathlons. Yes, they were going back to school, graduating from nursing school, medical school, or having more children.

My life was at a standstill, and I thought, I could spend the rest of my life sitting on this couch in my living room, or I could do something different.

Several of my doctors recommended therapy…aquatic physical therapy….boxing, biking, and others had been mentioned. I had already completed occupational, cognitive, and speech therapy. My insurance stopped paying for it, and I wasn’t getting anything out of it anyway. I don’t have access to Rock boxing near me, but here is a link for it, just in case you do:

Home

This is a program designed for those of us with movement disorders similar to Parkinson’s.  They have locations through out the U.S. I don’t believe that you need to have a prescription from your doctor, and other than that, I would recommend using the link to find more information.

Aquatic physical therapy is good for those of us who have limited range of motion and balance issues. You would need a prescription for that.

There have been significant improvements with movement issues caused by brain injuries after riding bikes.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4557094/

http://www.medscape.com/viewarticle/751998

This is a research article that explains how it helps with Tremors and Bradykinesia.

http://commons.pacificu.edu/cgi/viewcontent.cgi?article=1433&context=pa

It is also helps with balance. Now, from what I understand, if you do not have fantastic balance to start off with, go for a stationary bike. One of our CPM friends, Todd, has been biking for years,and he has said for years that it has helped him. Turns out, he’s not the only one seeing improvements with movement issues after cycling.

For me, I started walking. Now, there a gazillion reasons to get out and walk. It lowers BP, raises endorphins, lowers stress, etc. For me, I had to start off with just 1/2 a block. That was it. It was hard. It was a bit depressing because I would compare it to what I had been able to do pre-brain injury. Here’s the thing: DON’T DO THAT!!!! Do NOT compare your current self to your past self. There is absolutely NO good that will come of it.

As my daughter says, “You get what you get. You don’t throw a fit.” Yes, that’s easier said than done, but practice it. Even if we didn’t have a brain injury, comparing our former selves to our current selves, NEVER solves anything. It just doesn’t.

We’ve been given this life, and we’ve been given this struggle, but here’s the thing, if not this, it would have been something else at some other point in time. Cancer. Diabetes. Heart attack. Stroke.

So, we’ve got to suck it up and move on.

These therapies above, they won’t make turn you back into your old self, but they might help you move beyond what you have to deal with today. They will help. They will make you mentally stronger, if not physically stronger. They will give you the determination to succeed against the body that does not work with you as much as it once had.

And it is not easy. I promise you, it will hurt. Your muscles will hurt. You will get tired. You might even get angry, especially if you compare your current self to your old self. Hopefully, you will have a fantastic group of friends, family, and hopefully, a loving spouse to motivate you to keep working. Actually, you need to have a friend or spouse or someone to go with you. Trust me, you don’t want a broken leg or a bump on the head because you lost your balance…at least to start.

My first attempt at this was walking. I added more and more distance, and when I finally mastered about an hour walk a day, I started adding more tedious trails. Again, I did not do this alone. I had a good friend who went with me. It was important. Remember, this is not a contest: Pace yourself.

If you can, especially in the beginning, see a massage therapist. They will help work out the kinks that don’t seem to want to unkink on their own. Take about 400mg of magnesium with about 200mg of calcium. This will also help with cramping.

And maybe take an Aleve or Advil before or after you go, with food, because it can cause gastritis if you don’t eat. This will also help with muscle pain and cramping. Just don’t take those for too long because they can lead to stomach, kidney, and liver problems with long term use.

In the end, 2 years post starting exercising, I STILL have cramping within the first 50 yards of my hike or swim.  (I just started cycling, but I look like a drunk monkey because my balance is so bad- HA!) So, I can’t promise that the cramping or pain will stop, but you will develop the determination and the mental fortitude to keep going despite the pain because WE ARE STRONG. We are survivors!

Please contact me if you want more information on any therapies.

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Apologies and such:

Hi, All.

I hope you are doing as well as we can be. I feel like I should apologize because there is always so much that I want to do, and there is so much that I haven’t done.

I feel like I’m always falling behind, in everything, and I find myself apologizing for a lot of things.

I apologized to my daughter for not having the energy to take her swimming today. I find myself thanking God that the pool isn’t open until after I go to work. Tomorrow, though, I will be heading that direction. We do have a good time at the pool, and I love spending that time with her.  Soon, school will be starting, and I will wish I could take her to the pool again.

Time is flying by, and it seems like I am standing still.

My days are filled with so much. Laundry. Groceries. Cleaning. Cooking.

I have taken on those responsibilities because my husband and I have separated. There is so much that I could say about that but won’t. I know it’s for the best. I am so relieved.

Taking on the role of being a single mom has been insane. My world before EPM, I wouldn’t have hesitated at being a single mom. I worked full time. I went to school full time. I took care of my son by myself.  I was stressed, but I could handle it. Now, I can’t even go to work 16 hours a week, and I find being a single mom exhausting.

But, when you are in an unhealthy relationship, you have to make changes. You can find yourself a target for abuse and manipulation. It’s easy for that to happen when you have short term memory loss. It really gives perspective on how our elderly in society can be taken advantage of. You have to watch for warning signs.

I find myself apologizing to friends for not being able to visit or talk. I find myself apologizing to family for not reaching out, or for saying that I will come to an event, but then running out of energy and not going.

I find myself thinking about those of you looking for information and for treatments, and I feel so badly that I haven’t gotten the latest numbers up or info that I posted in comments loaded to a new post.

After I get home from work, I find myself drained, and I find that I still have to put away the dishes, and unpack a suitcase, and that tomorrow, which is really today, I have a doctor appointment, have to make lunch and dinner for the kids, and clean, and do more laundry, and make appointments for the groomer, and make arrangements to get the dog, and fill out paperwork, and get paperwork, and make phone calls.

I am alive. I am grateful. I have so much to do, and I know you do to.

Hopefully, I will make this part of my routine because there is so much really important stuff to discuss, but for right now, I am sorry because I have to go to sleep.

I will make the effort tomorrow to add more relevant information besides just an apology. Please, be the thorn in my shoe and keep on me to do it, until then, I’m glad we’re still alive and kicking. Thank God for today and tomorrow!

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