Hyponatremia and Central Pontine Myelinolysis

What is hyponatremia? Information regarding CPM and EPM.

Archive for the tag “occupational therapy”

27 Jul 2016
5 Comments

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.

Posted in Life with CPM/EPM and tagged , , , , , , , ,
20 Jan 2012
1 Comment

Discharged:

I think one of the hardest moments I faced after developing CPM/EPM was being discharged from the hospital. I literally had a bit of a break down. I don’t think my reaction was abnormal.

I was already beginning to see some improvements during the week I was hospitalized for CPM/EPM. At the same time, I was still really screwed up. I was NOT anywhere close back to my formal self.

I had only had the injury for about 10 days. I was aware from the very little access to information online that I would not be considered out of danger for at least 3 weeks from the date of injury. Some research suggests that you can be at risk for dying for up to 12 weeks. There’s just not enough research and answers fluctuate.

Everyday I woke up in the hospital I felt a sense of relief, but every time I went to sleep I felt anxiety. Would this be the time that I would not wake up or wake up and not be able to move?

At the same time, the doctors were monitoring my symptoms intently, but they were truly unable to do anything but watch me.

They were afraid to give me things like pain medications or even something as benign as glucose IV fluids because they were concerned with how they would impact my neurological functions.

Despite their not doing much of anything but observing, I felt a comfort in knowing I was there. If something bad happened, I knew that something could be done immediately.

I was also extremely dismayed at leaving because I was NOT normal. At that point in time, my list of neurological issues was extensive. I had problems losing my balance, walking into walls, developing hypotension when I was standing and hypertension when I was sitting. How was I going to get back to a “normal” life if I couldn’t even stand up for long periods of time without getting super sick?

One of my biggest issues at that time was my speech problems. It was extremely obvious, and I have a phone sales position. How could I perform my job if I couldn’t speak properly?

I’m sure if you are reading this, you are experiencing something similar to this or deficits that may be greater. It is terrifying. There aren’t any “real” answers. There is a lot of unknown.

This will probably lead to anxiety and depression when you are released from your hospital or hospice. It’s like losing an anchor in the middle of a hurricane.

What should you expect?

First, make a list of your questions. Is the hospital or rehabilitation center setting up ongoing occupational, speech, and physical therapy at home? Who will be in charge of your ongoing treatment? Will it be your general practitioner? Will it be a neurologist from the hospital who was treating you? Who should you consult regarding your work notes, disability claims, insurance questions? What will your insurance company cover? What will your co-pays be? Will you need 24 hour support, live in aid or daily assisted living? What type of medications will you need and those side effects? Is there any doctor associated with the hospital that has experience with CPM/EPM? Can you drive? Are there any specific physical limitations that should be avoided? Is there a support group they know of (you probably won’t find one for cpm/epm, but you might find one for neurological disorders or brain injuries?

Is there a source for your care givers? For instance, you may experience things like paranoia, dementia, irritability. These are normal psychological effects of it. If you become unstable, who should they call? If your symptoms become worse, what should they do?

If you were employed before your injury, you need to get in touch with your human resources department. If you are a caregiver of someone who has CPM/EPM, you will need to contact their employer to let them know what the situation is and find out about their disability policies. In most cases, you can fill out FMLA forms to help protect their/your job. If you are a caregiver, you will want to find out about becoming power of attorney.

In most cases, you were not anticipating this to occur, and it is a huge surprise. You might have been perfectly healthy previous to this injury, but now you’re facing the chance of having life long injuries. You probably did not have things like your living will, durable power of attorney, health care power of attorney.

IF you are reading this as a precaution, and you’ve never developed hyponatremia or your CPM/EPM, then I recommend taking the initiative and getting these basic legal affairs taken care of. Let’s look at the facts, you may never develop CPM or EPM, but you do have a fair risk of developing hyponatremia.

Further, you are going to die at some point, whether it’s a car accident in 3 weeks or a heart attack tomorrow. It’s inevitable. You need to be certain that you have everything ready for your family and your friends.

At the very least, you need to discuss your plans with your family and friends. It’s never a comfortable subject. No one wants to face the reality of losing someone they love, but it’s worse to leave the heavy burden to your family and friends when they are suffering from the pain of not having you in their life.

If you need help, most lawyers will consult with you free. There are legal forms that are available online. At the very least, you can create a document at home, typed or written that express your wishes.  You simply take that letter to a notary (usually a bank will have a notary) and sign and date it in front of them. It has to be signed and dated in front of the notary to be valid.

This is just a stepping stone on what to do. I hope this helps, and if you think of any additional advice to add, please feel free to do so.

Take care!

 

Posted in Central Pontine Myelinolysis/ Extrapontine Myelinolysis and tagged , , , , , , ,

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