Oh yeah, I'm also an artist...

Here is a link to my art website, just in case you want to check it out: www.lizhume.com

Struggle

A couple of weeks ago I took a wonderful trip to Asheville, NC- and completely wore myself out! I went to the Biltmore and spent the whole day there- climbing all those steps and exploring the gardens. It was beautiful, but exhausting. Then the following day, we went to several of the waterfalls in the area, which required a bit of hiking. It was definitely a struggle! My boyfriend ended up giving me a piggy-back ride a couple of times! It made me pretty weak, but I still think it was worth it.

It's so hard sometimes dealing with this disease. There are days when I am so strong I almost forget that I have congenital myasthenic syndrome! Then there are days I am so weak, I wonder if I will ever be strong again.

So, here I am trying to follow this "couch-to-5k" plan, and after that weekend I was completely unable to train! I'm thinking it may take me longer than a couple of months to reach my goal, but I still think it's possible. I probably walked about that much at the Biltmore! Plus I was going up & down tons of stairs! But that was a couple of weeks ago, and I am just now starting to feel a little stronger.

Sometimes I wish I could see inside my body, and know what is really going on in there! How exactly are these nerves & muscles supposed to work together? How do muscles recover after exercise, and why does it seem to take me so much longer to recover than people without this disorder? All of the research I have read only mentions the problem of nerve transmission to the muscle. Nothing addresses muscle recovery. If I could just get my muscles to recover faster, I could do so much more!

So, I am struggling. Sometimes I get a bit discouraged, and feel like what I want is just impossible. But I reminded myself this morning that the body is incredibly complex, and no one can really fully explain it. Some people have serious illnesses and go into complete remission, while others with the same condition continue to decline. I have heard that some people with Myasthenia Gravis go into remission, but I have only heard of that in acquired cases, not congenital cases. I'd love to be in remission! I would be unstoppable! Look out, mountains, here I come!

First Run/Walk

Well, maybe I should call it a "Walk/Run." It was definitely more of a walk! But that's the way it's supposed to be. I set out on a 20 minute walk- approximately one mile, and was able to incorporate 3 bursts of running at a minute each. That third burst was pretty tough for me. I had to imagine Jillian from The Biggest Loser pushing me through- "Come on, just 30 more seconds! You can do it! Don't stop! 10 more seconds. All right! You did it!" So I raised my arms in celebration and did a cool-down walk the rest of the way home.

It feels so good to be walking. Sometimes it's hard for me to believe how much of my life I spent in a wheelchair. And I had always believed that pushing myself at all physically would only end up making me worse. If only I had known that over-resting was making me worse! Over-exertion in the short-run certainly makes me weaker. So I have to be careful not to push too much. I don't want to take a week or two to recover! I'd much rather be able to recover in a day or two. It's hard to take it slow though when I am having a "strong" day. I will have to make myself conserve so I can maybe turn one strong day into two.

I'm off to a good start. Just gotta stay consistent!

On the way to a 5k

I've been researching the last few days on how to train for a 5k. It looks like the general consensus is that it's best to train slowly and not push too hard. Good advice for everyone, but especially for those of us with myasthenia because we tend to get over-extended more quickly than everyone else. Plus it seems our recovery time is much longer.

I wonder if it's possible to minimize recovery time. There are lots of supplements on the market for body-builders, but I don't know if any of these products actually work. One that I am very curious about is Glutamine. Supposedly this is a product that helps your muscles recover. I guess I can give it a shot. Need to talk to the doc and see what he thinks about it.

Today I officially started my training. I got some ankle weights and did a few sets of various leg lifts. It felt really good! I've been walking a lot, but now that I have a goal I will have to be more focused. I found a "Couch to 5k Running Plan" that could be perfect for me. It's a 3-day a week plan, starting with 20 minutes. It's a nine-week plan. So I should be doing a 5k around Oct 17. That's pretty exciting to think about! I will definitely need some encouragement along the way.

Road Block

I've been taking Fluoxetine for about 5 months now, and I seem to have hit a wall. Everything was going so great a month ago. I ran! I ran a half a mile! It was unbelievable. In fact, I did it twice! But I haven't been able to do it since then.

I have been feeling pretty weak. My mouth especially has been bothering me- trouble talking. I've lost my smile again. It is so frustrating. I had been so excited to see my smile- even if it was just for a little part of every day. Even my eyes were starting to open up. Now it's as though I'm not taking anything. I just don't understand it. How can it just stop working? Do I need to take more? Less? My doctors are just guessing.

I just want so much to be better. To be WELL. I love to travel, and it would be so great to be able to walk around the old cities without getting tired. Or to be able to hike, and see all the amazing places I can't get to in a wheelchair. I am still amazed that I was able to hike a bit in Switzerland. I think that really awakened something in me. I have seen so much beauty- even from the seat of a wheelchair. I went to Alaska and to Rocky Mountain National Park in a wheelchair. But it's a very limited way to view the world. And you have to find places that are accessible. Sometimes I just want the freedom that comes with being able to walk.

I have thought about attempting a 5k. Especially on the two days that I was able to run. There have been days when I have been able to walk as far as two miles. A 5k is slightly over 3 miles. So maybe it is possible. I just wonder how in the world I could train for that. It seems like it takes so long for my muscles to recover. If I could just figure out how to work out enough to get a benefit, without overdoing it, maybe I could really get stronger. Maybe I could really increase my endurance.

I keep wishing there was some easy solution- like some apparatus I could put on over my legs that would enable me to walk without getting tired. I've seen the exoskeletons they are developing, but they aren't available for sale yet, and they are too expensive for me any way. But I do wonder if they work on mountains! Maybe they will come down in price in the next few years so that the average handicapped person can actually be able to "walk" instead of having to use a wheelchair. How amazing that would be!

There is a woman with MS, Wendy Booker, who is so inspiring to me. I first read about her in Prevention magazine several years ago. She was able to compete in marathons even with MS. When she was diagnosed, she was determined not to let it keep her down, and worked out with a trainer to develop and maintain her muscles as much as possible. She said there were days when she was so weak she could only lift a 1 lb weight, but she did it any way. Now she is working on climbing the Seven Summits. I know that MS is a different disease than congenital myasthenic syndrome. But both are neuromuscular diseases, and neither has a cure. Both have varying degrees of weakness, and affect each person differently. My case of CMS is relatively mild. Perhaps it is possible to train my body to work more effectively and efficiently. Maybe it is possible for me to be able to climb mountains. I just have to figure out how!

4 months on Fluoxetine

Back in March my doctors and I decided to try something new. Since mestinon and other similar drugs always made me significantly weaker in just a short period of time, we decided to try Fluoxetine. Mestinon is used for several types of Congenital Myasthenic Syndrome, and works to allow more acetylcholine to reach the receptors in the muscles. Fluoxetine works in the opposite way, blocking acetylcholine from the receptors.

Generally after a week or so of treatment on mestinon, I start to notice I'm getting weaker. The longer I take it, the worse I get. So I started researching on the internet, trying to see if there was anyone else going through that. I found a story about a boy who had been taking Mestinon since he was a young child, and at age 14 was on a respirator and confined to bed. The doctors discovered he had Slow-Channel CMS and switched him to Fluoxetine. Within a month he was able to breathe on his own, and after about a year he was able to play on his high school football team! I was so inspired and hopeful that perhaps this could work for me as well.

After the first week of treatment, I could already tell I was walking more easily. By the end of the second week I was walking up stairs like they were nothing! Over the last 4 months my strength has continued to improve. I no longer have problems breathing, chewing or swallowing. My eyes are more open, my smile is bigger. I can walk farther than ever before. And recently I was able to start running! I haven't run since I was about 8 years old! That was 24 years ago! It was so exhilarating, being able to run. My first run only lasted about a minute. But recently I have been able to run up to 1/2 a mile. This is astonishing for me. I never thought I would be able to run. My hope is to be able to start hiking. I have read about a woman with Multiple Sclerosis who is hiking the 7 Summits (the highest peaks on each of the seven continents). I would love to be able to do something like that! I know it will take time, and a lot of hard work and determination. But it would be worth it.

Trying Fluoxetine

Several months ago I started doing some research online to see if anyone else out there was experiencing similar negative reactions to Mestinon and 3,4 DAP. What I discovered was astounding to me! There are different causes of congenital myasthenic syndrome! I couldn't believe I had never heard about these other forms of CMS.

***I started this post 2 years ago in '09, so it's hard to remember all that I was going through at the time. So instead of trying to recreate what I might have been feeling or thinking then, I'll go ahead and pick it up now with some of what I have learned.


The first thing I learned was that Congenital Myasthenic Syndrome can affect different parts of the synapse. (The synapse is the space between nerves that transmits an impulse {like a message} from one nerve to the next) CMS may be pre-synaptic, post-synaptic, or synaptic, which means the defect may occur in any of those areas. Then there are subtypes, including slow-channel (meaning the gateway to the synapse opens/closes too slowly, letting too much of the chemical in) or fast-channel (meaning it opens/closes too quickly and the chemical can't get through). Mestinon works great for fast channel CMS because it keeps the channel open longer. But this is also why it can be disastrous for people with slow-channel CMS. Too much mestinon causes extreme weakness.

Once I read this, I immediately concluded that I must have slow-channel CMS. My previous disastrous experiences with Mestinon led me to believe I needed whatever the opposite treatment would be. I read about two drugs- Quinidine and Fluoxetine.

Quinidine is a drug that is used primarily for heart patients. Because of the warnings, and because my neurologist at the time had not prescribed it before, we opted for the less dangerous Fluoxetine- better known as Prozac.

It seemed strange to be taking an anti-depressant to help me walk, but I was willing to try anything. My experiences with Fluoxetine are described in a couple of other posts.

Unfortunately, my self-diagnosis was wrong (and also unfortunately, my neurologist did not have me undergo further diagnostic tests to confirm the correct form of CMS). So I spent almost two years on Fluoxetine, and my condition continued to decline. I almost could not walk at all, and was feeling like I would never be able to walk again, when I moved to North Carolina and went to Duke Medical Center.

My new neurologist took some blood from me and sent it off for DNA testing. And what they found was a type of CMS that I was not familiar with. I had a defect in my DOK-7 gene. The good news was that they were having some success treating this form of CMS with Albuterol, which has been used for decades to treat asthma.

Throughout this ordeal, I have learned that getting the correct diagnosis is absolutely crucial. It is impossible to know based on the symptoms which type of CMS you have. Even people with the same cause may have varying degrees of severity and will react differently to the medication. I'm so happy to finally be on a medicine that works, and I am looking forward to a very active future!