Nothing Short of a Miracle

Hello!

Long time no see.

Why not?

Because I just didn't have the energy.

A few months ago just the simple act of showering or dressing for the day was leaving me exhausted. My "afternoon rest time" was more of a coma that would last 4-4 1/2 hours each day. I had just enough energy to bathe daily and try to spend time with people I loved. That's it. And things felt like they were just getting worse from there. I lived in fear of becoming bed bound.

I reached out to my muscular neurologist in a last "Hail Mary" plea. I let her know my fears and how bad things had become. She had one last suggestion that we hadn't tried yet. A new drug being used to treat muscular diseases (*off label) called Amantadine.

I started Amantadine about six weeks ago. The difference was immediate and drastic. I would call it a miracle. It immediately gave me more energy than I'd had in about five years. Not only that, but it helped decrease my vertigo symptoms as well. Something nothing else had been able to do, even Botox.

Then something even more fantastic happened. My "rest time" decreased to an average of two hours. I gained back 14 hours of my life per week. That is so amazing that I can't even express it. That's like all of the Harry Potter movies every week's worth of time.

Also what changed was that energy translated to more muscle strength. Even though it didn't help my muscles directly... having more energy meant I could accomplish more in a day, which often required muscles. Like cleaning, gardening, fixing my hair, putting on makeup. Things that before I had very little energy for I could now do back to back to back. Laundry, cooking, playing with my dog. You get the idea. All requiring muscle strength and stamina. So the more I did, the stronger my muscles became and I had a little more stamina each time.

And now the HUGE news.

Yesterday I did something I haven't done in five years.

I walked my dog around the block using just my cane.

Yup. It felt like I had just climbed Mt. Everest. I was elated. 

I called my husband right away and he was just as excited as I was and so proud of me for pushing myself.

So yes, I still have my muscle disease. I haven't been "cured." But I have a huge chunk of my life back. I hope to continue to build on this. I will gently push myself and listen close to my body. I'm still down 30lbs from where I was last year, which is another thing to be proud of. No easy accomplishment. Any of it. 

I'm proud that I asked for help. That I communicated what was going on with me to my medical team. That I listened and was always open and willing to try new things. And that I'm fortunate enough to have good medical care! I feel lucky, resilient and determined. 

(I received no incentive to write this. Amantadine is also called Gocavori. Here's more information about it if you're curious. I don't have Parkinson's, but it still helps me.)

*"Off-label" means the medication is being used in a manner not specified in the FDA's approved packaging label, or insert. Every prescription drug marketed in the U.S. carries an individual, FDA-approved label. This label is a written report that provides detailed instructions regarding the approved uses and doses, which are based on the results of clinical studies that the drug maker submitted to the FDA

November Neurology

I saw my muscular neurologist last week. These appointments are always infrequent and stressful. It's stressful because I know it will involve a lot of testing. This one was no exception. For this visit I tried something new. I drew out an image of my body and what my current issues of concern are. I also made a list and sent it to her ahead of time.

They all shared that the drawing was very helpful. The resident suggested I start a comic strip with her as the main character. That gave me a chuckle.

The clinic had a new Pulmonologist who I really liked. She was very thorough and tested for things I hadn't been tested for before.

She said that I would benefit from a device called a "Cough Assist" and that my lung muscles were testing a little low. Given the lung issues I have that feels about right to me. I'm not too excited about a lung machine, but I'm trying to keep an open mind.

My neurologist chastised me for putting off my sleep study. I rolled my eyes and ordered it after our appointment. -sigh- 

The resident spent way more time with me than my neurologist. He asked me of all my pain what is the worst. I told him my lower back. They both agreed they want me to try physical therapy and if that doesn't help I'll go to the pain clinic for possible injections. I'm glad they listened and offered solutions.

All of this left me completely exhausted and my chest hurt for two days. 

The appointment reminded me that:

• No one knows what's going on better than me.
• No one knows what's going on if I don't tell them or show them.
• Only my symptoms can be controlled, not the cause.
• Doctors care about what's the WORST, not everything wrong.
• Some of my symptoms are scary, persistent and nothing can be done to help.
• Being sick is a lonely experience.

Pretending to Be Normal

There are times where I just get so sick of my body and my illness that I have what I call a "normal burst." That's where I just pretend that I'm a normal, healthy person who can do anything they want. I resent my medications. I resent using mobility tools. And I hate that my body fatigues. So I just push and push and push till I completely gas out.

Today was a day like that. 

I had a lovely morning with my Mom and when I kissed her goodbye for the afternoon she said "Now go and rest." We had swam that morning (Well, I more stretched and floated) and that was good advice she gave me... But something in me said "NOPE! I'm going to GARDEN because I AM NORMAL!!!" It's like my inner brat breaks loose or something?!

So I did. 

I watered my garden and did some pruning and cleaning. I felt my body want to quit, but I pushed it. I pushed it when I knew I should just stop. 

Why? 

Because it felt so good to be out there doing exactly what I wanted to do for a change instead of what my body wanted me to do (which was what my Mama told me to do... go and rest.)

I often fantasize about the things my body used to be able to do. Snorkel, bike ride, hike, etc. I think that's super normal and I'm sure many disabled people do the same. Especially considering I haven't been disabled that long. It was just 19 months ago that I was snorkeling in Hawaii with my husband and work friends. No way could I do this today.

Sometimes pushing myself is worth it. 

I try not to push so hard that my muscles go into rhabdomyolysis. It has happened a few times in the past and I like to think I learned. Pushing myself helps me know my limits. If I don't go to that breaking point I won't know where it is. It also gives me a little taste of what it was a like to be my "normal" old self again.

Try ALL the Things!

It's a new month. August. The bridge between summer and fall. A perfect time to try something new. I've been told (and my own research confirms) that I am not eating properly for my muscle disease. What I should be doing is eating many small meals through the day that are high in protein and "good" fats and low in carbs. But what I like to do is eat two large meals (especially dinner! My favorite) and nothing in between. Breakfast to me is a banana or just coffee. Not so good. 

Soooo... Since I want to be my best healthy self that I can be. And I'm also very fortunate to have access to food. I want to at least try eating the way that my doctors recommend. With gratitude in my heart that I have the financial stability to be able to do so. Especially now during the pandemic.

Soooo... I did a lot of research and here's what I found:

1. I should try eating 6 smaller meals a day. 
2. I will prioritize foods naturally high in COQ6 since that's where my major genetic mutation is.
3. I will focus on foods that are high in protein and fats and low in carbs.
4. I am going to pay close attention to my symptoms and how I feel.
5. I am going to try this for the entire month of August.

Yes. I already started!

I read that foods naturally high in COQ10 are:

• Trout
• Herring
• Mackerel
• Sardines
• Spinach
• Cauliflower
• Broccoli
• Oranges
• Strawberries
• Sesame Seeds
• Pistachios
• Eggs
• Soy
• Peanuts

(I got this instead of Taco Bell the other night. One small choice at a time!)

Some basic "good fats" are:

• Avocado
• Salmon
• Peanuts
• Olive Oil
• Eggs
• Dark Chocolate (85%)
• Macadamia Nuts
• Tofu

Foods high in protein are:

• Anchovies
• Eggs
• Yogurt
• Tuna
• Salmon
• Pumpkin Seeds
• Cottage Cheese
• Peanuts
• Tofu
• Beans
• Halibut
• Peas
• Oats
• Hummus
• Broccoli
• Popcorn
• Avocado
• Asparagus
• Potatoes
• Shrimp
• Guava
• Sun Dried Tomatoes

Food helpful for inflammation are:

• Flax Seed
• Green Tea
• Turmeric
• Walnuts
• Pineapple
• Kale
• Garlic 
• Broccoli
• Lemon
• Berries
• Avocado
• Cantaloupe

These lists aren't all inclusive, but are helpful for me. I also notice a common theme. Like rich fish, eggs and tofu. Those will be a staple for me. 

My hope is that maybe I'll have more energy with eating this way and even a little less pain. That would be lovely. It could also make some weight loss easier too. Fingers crossed. I'll keep you posted!