Monday, April 25, 2011

Seizures/ Strokes/ Stroke Like Episodes are common for us :(

Can you imagine a child that takes having a seizure or stroke like episode so in stride that they tell you hours later?
"Mom I had a seizure and made a mess in my pants. I decided to wear a diaper all day today just in case"
That came from my almost preteen child!

There are some promising treatments to help with strokes and stroke like episodes for those of us with mito. For those that don't know a stroke like episode is like a TIA commonly thought of as a precursor to a larger stroke. For those of us with mito these episodes of hemipalegia (one side weakness are paralysis), apraxia (speech problems) and other stroke symptoms can come and go as often as several times a days to occasionally.

My daughter had her first stroke the Halloween she was two. She kept walking into other people's yards and was incredibly tired. The left sided weakness got better over months but never went away :( For me it is my right side, so my daughter says when we are together we are whole and stronger!

I agree together we are stronger!

Friday, April 15, 2011

A peek behind my healthy mask at an energy crash

One of the biggest misunderstanding of mito (mitochondrial disease) is the fatigue or energy crash issue. Ask a person with Chronic Fatigue Syndrome what is the hardest thing about your condition and those that I have talked to will say 'it's looking healthy and yet my body is not.' The problem holds true for mito patients.

We can look healthy and on the inside our very cells are struggling minute by minute to keep up the demands of the body. Mito causes our bodies to produce less energy, use it less efficiently, and regenerate it less efficiently.

For instance a healthy child runs around a track at school for gym class. They are winded and red faced. Five minutes later they are laughing and back to normal. A child with mito may not be able to run around the track at all. Problems they may encounter could be everything from simply not enough energy to move their muscles, to a temperature that is suddenly out of control, or worse like a seizure or stroke like episode caused by lactic acid from the muscles. Then even if they can run around the track without major issue it may take them days to get their energy back.

Without realizing it I have been having energy crashes all my life. Here is a recent you can have a better idea what a crash looks like and feels like.

This past Christmas season was a tough one illness wise for me and the kids. We started getting winter illnesses back in August and they just kept rolling through until early December. That leaves us open to all kinds of problems with mito. That also leaves us exhausted physically.

Christmas morning came and the kids woke up ready to go. My husband needed to insist I get up and come upstairs. I didn't know what was wrong but each movement cost me dearly. Each step was like climbing a mountain. I couldn't think or talk clearly, nothing made sense to me.

I sat on the couch and had presents put on my lap. I don't know what I opened. I tried so very hard to "wake up" enjoy Christmas but I couldn't. I was unable to even open my own presents. I had my children open them. I don't know what I got or what the kids got. I had to be helped back downstairs to bed after the presents were opened.

Again my husband trying to help me, woke me up in the afternoon. Understand that was not true sleep I had. I was fumbling in my sleep. The blanket was so heavy my weaker right side couldn't push it off. The feeling of helplessness crept into my waking/sleeping. It was a relief to be woke up and brought upstairs again.

I was using my wheelchair because my legs would not hold me. Again I could not stay up for more than 40 minutes. I was awoken once more to eat dinner with the family. I was able to sit at the table. I don't know if I ate or drank anything. The entire day was such a blur of grayed out, mismatched images.

I lost a Christmas with my children. Mito took that from me and there is nothing I can do to ever get that back. If you had seen me that day I looked tired but normal. It would have taken a keen eye to see the droopy right side of my face and eyelid. You wouldn't have seen the struggle and problems with thinking I was having just by looking at me.

Sadly those in the mito world are so often judged by the outward appearance of health. Even if inside we are falling apart. What I experienced was called an energy crash. It can often happen when a person is stressed metabolically, physically exhausted, or can seem to come out of nowhere. In my case it was the long run of illnesses and the added pressure of Christmas that pushed my body over the edge.

When you have mito you can be too tired to:
~maintain your temperature
~keep enough energy flowing to all your brain to prevent damage
and the list goes on...each person is affected differently 

I hope this helps you understand. You can image I wanted to enjoy my Christmas with my family I was unable. Not out of choice, or inability to overcome it with a strong will. My body failed me because I have a mitochondrial disease.

My prayers go out to those fighting this disease along with me. I am also sending out prayers to those that are working towards finding testing, treatments, and hopefully a CURE for this disease.