Assessment and Plan

I am one of the few lucky ones.

I had my mitochondrial disease diagnosed fairly fast. I was believed and not gas lit by either my primary care doctor, nor my neurologist. I quickly worked my way up the neurology ladder until I was seen by the Chief of Staff himself who was the one to recognize my symptoms and diagnose me, even before I had my muscle biopsy and genetic tests. 

I also live in a place with world class health care. I am incredibly fortunate.

I have been seeing my "Muscular Neurologist" Dr. Lisa Williams at the UC Davis PM&R Clinic (Physical medicine and rehabilitation) for about six years now. At first she saw me every three months, now we check in every six months.

My favorite thing about her is that just like my handyman, she always has a plan. I come to her with a list of concerns and she comes up with a plan. I just saw her yesterday and this is my plan for 2025...

 Assessment & Plan

Mitochondrial Myopathy

Exacerbation of fatigue and severe weakness after flu vaccine. Generalized muscle fatigue without pain or cramping. Right side weakness reported. Stable with dietary modifications (medium chain fatty acid).

-Continue dietary modifications.

-Continue CoQ10 300mg three times a day.

-Continue Amantadine 200mg daily (refill 90-day prescription).

 

Dysphagia

Increased difficulty swallowing, particularly with soft solids. Choking reported. Last swallow study was normal. Referral to ENT for repeat swallow study.

-Continue monitoring and follow up with ENT for swallow study.

 

Migraines

Managed with new medication after discontinuing Botox due to side effects.

-Continue current migraine medication and follow-up with neurology.

 

Asthma

Increased symptoms over the past six months, potentially due to poor air quality.

-Continue current asthma management.

 

Neuropathic Pain

Severe, particularly at night. Pain is diffuse, intense, and worse with movement. Pain is primarily muscular. Current medications (Lyrica, Duloxetine, Amantadine) provide some relief.

-Consult with Dr. Chinar Sanghvi regarding potential innovative treatments for pain control such as buprenorphine or IV ketamine.

 

Impaired mobility and ADLS:

Foot Drop

Managed with Ankle Foot Orthosis (AFO) brace and soft brace for shorter distances.

-Continue use of AFO and soft brace as needed on the right. Strength stable today.

 

General Health Maintenance

-Consider low-intensity exercise classes for neuromuscular exercise.

-Consider use of a cervical pillow for neck pain.

-Follow up with sleep study results and potential need for CPAP.

No way am I going back to using a CPAP machine by the way. I get it for people who really need them like my husband. But I don't fit that category. 

Dr. Williams cares about my quality of life. She also learns a lot from me. She had another patient with similar genetic mutations try a "short chain fatty acid diet" with great success. I'm pretty sure I'm a paper somewhere.

My own plans this year include knowing my limits and paying better attention to them. Not pushing myself to "do all the things" and just try and be as healthy as I can be.

"I Don't Do ENOUGH!"

I tell myself lies.

I've always been a very busy person. Handy with my house, working, making money, enjoying others and volunteering in my community. Not to mention supporting family and friends. All of that changed dramatically when I became ill. It's something I still struggle with. That feeling of "I don't do enough." Or "I can still do that." Both lies I tell myself.

Thank goodness both my mother and my husband disagree with that statement. In fact they remind me to pull back when I need to. Which is often.

Right now we're having our bathroom remodeled and it has killed me not to do any of it myself. I did it in the past and I remember myself being very physical. But that isn't my truth right now. Now I need to conserve my energy. Now if I did something like paint a door I would be in incredible pain for days. In fact the very last time I painted in 2017 I was in incredibly pain. Looking back I think that was the very start of my issues.

My mom helps with my dogs ALL the time.

I remember being a bit dizzy on the ladder and my hands cramping so bad. Neither had happened before. At the time, both my husband and myself chalked it up to "getting older." I don't think that was the issue.

Now I don't work in an office and I don't volunteer in my community. Most days I feel like all I can do is prepare food, keep myself clean and do some small chores around the house. Some days I feel ok, other days I feel awful. I never, ever feel "good." Just levels of bad. 

So the lie that I tell myself that I "Don't do enough" couldn't be more wrong. I push myself every single day. I could very easily just not get out of bed. But I have relationships, help friends, get out in my community, walk my dogs (when I can) and try to take care of myself and those I love. 

I'm doing plenty.

Getting my eyes checked the other day.

Medical appointments keep me pretty busy.

Who do you want to be?

One of the things I love most about life (and there are many) is the chance to constantly re-invent yourself. It is literally never too late. You choose, for the most part, who you are. Who you want to be. Do you want to be a good parent? Do you want to be a scholar? A partner to someone? Adopt animals or children? Start a non-profit? Put out fires? What kind of person are you? You choose.

My newborn son's footprints. 1/23/94

This extends somewhat to the appearance you show the world. Do you chose to be a flaming redhead, or maybe a blonde. Do you only wear black with spikes on your shoes and metal chains? Do you wear no makeup at all and let your natural beauty shine through.

My Masters graduation. 2017

Of course by now we all know that there are many conditions that make it very difficult to manage weight. Hypothyroidism is one of them. I have it, so does my mother and son. My grandfather also had it. On top of that I'm over 50 and disabled, which makes the challenges all the larger. But it's not impossible.

The choices I make literally make me. 
I chose to be a stay at home mom. I have a huge "caring for others" streak that is essential to my person. I chose to go back to school and then to become a therapist. I chose to get married (one of the best decisions I ever made.) 

"
2013. Me not knowing how beautiful I was. I am.

Every moment of every day I make some kind of choice. I chose to sit down and write this blog.

Food is a difficult choice for me. I tend to be obsessive when I make a big change. Buying tools I feel like I'll need to succeed. Re-arranging my environment to best support my whopping new goal. It's the ADD in me and also a way I try to control things that are difficult to control.

I'm trying to make better food choices and to battle my addiction to food. I can feel that monster getting bigger. If I don't address it now it will take over my life, my mobility and my health. I don't choose that. 

Me in Iceland. 2014

Are you a mini or a maxi?

I've been a massive maximalist most of my life. But deep down inside has always been a minimalist dying to come out.

I'm a maximalist in all ways. Spending, decorating, buying clothes for my dogs, eating, loving people. It's very easy for me to go way over the top in all areas of my life. My husband will ask me if I want something now, or later? Both is always my answer. Did I want to go on a trip for our 30th anniversary or get a nice piece of jewelry? Both of course. Would I like the appetizer or dessert? Uhhhh BOTH!

See the pattern? 

Restraint, budgeting, minimalism, living withing my means, decorating within the boarders of my walls... nope. Big no to all of that.

I'm an expert money spender!

2025 is knocking. It's the perfect time for reflection and change.

1 - I want to be much less of a consumer. Both with my wallet and my mouth.

2- I want to de-clutter my environment. Donations and Ebay selling are the best way to purge.

3- I want to be more on top of my finances. As long as I'm not working (and I don't think that's changing soon) I feel I need to be more responsible about my budget.

4- Be out in nature more. 

5- Be more active with the dogs & take them out with me more. That always takes a ton of spoons, but I feel it is very worth it.

I also want to embrace new ways to self sooth that don't involve hurting myself (by over-eating or by over-spending.)

WHEW! That's a big list. Notice how "weight loss" isn't there?

When I put pressure on myself by turning my focus on that, I fail. I'm tired of failing, so I'm not making it a goal right now. My hope is by trying to do a better job of taking care of myself and simplifying my surroundings, other things will fall into place.

Happy New Year.

I wish nothing but amazing things for us in 2025.

Patients Helping Patients

I belong to a Mitochondrial Support Group on Facebook. Honestly being able to message my son (he only uses "Messenger") and this group are the only reason I even have a Facebook account. "Mito Cafe: Support For Adults With Mitochondrial Disease." Where would I be without you?

I don't check in very often. But when I do I always find that I'm able to either help someone, or receive help myself.

New people to the site are always scared and overwhelmed. I totally understand. This disease is scary and overwhelming. Things can change or happen so quickly. I feel like I have no control over my body or health. It is very helpful to read about others in the exact same situation.

This was an interaction I had today that is very common. I feel very happy to be able to help others going through similar difficulties. 

Lizette O'Neill it really is terrible. I'm so glad you've found a good one. Can I ask what they do to help u with treatment? I shouldn't have gotten this far deteriorating like this... I'm so upset.

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Lizette O'Neill

Top contributor

It is very upsetting. I hear you. This is so hard.

I take a "mito cocktail" of supplements like most people here. COQ10 was a big game changer for me. I take 300mg of it 3x a day. Another very helpful treatment for me was Amantadine. It's meant for Parkinson Disease, but it helps me a lot with muscle pain and tremors. Then I take Lyrica and Cymbalta for pain and neuropathy (I have it all in my arms and legs.) The last thing that has hugely helped my energy is I take Nicotinamide Riboside 300mg. I learned that for this site. Someone said they were taking it and it helped them with energy. It helped me right away.

So yeah... a lot of pills. I've had all kinds of tests. A genetic test I recently had suggested I may not process "long chain fatty acid" foods properly. When I cut them all out of my life I was able to walk again and no longer use my wheelchair. That's pretty amazing.

Its taken me about six years to figure out what works for me. Even though we all have Mito we're all very different. I hope you find some help very quickly.