Concern about the impact of age

I know many McArdle’s people have concern about how McArdle’s impacts us as we age, so I wanted to offer a positive datapoint of both muscle growth and improvements in exercise and activities of daily living. This is my own experience, I hope it is helpful.

Physical improvements with McArdle’s can feel like a long, uphill slog. For me, consistent and careful efforts, aligned with clinical practice recommendations, have resulted in muscle growth, improvements in aerobic capacity and fewer daily symptoms/injuries. I am c.9 years into my experimentation with lifestyle interventions and have more muscle mass and exercise capacity now in my 40s than I did in my 20s.

One personal goal

One of my personal goals with McArdle’s is to continue being able to travel internationally – it is a big part of my joy and my family’s time together. For me, that translates into VERY practical life goals like:

• Being able to walk c.10,000 steps a day during a trip.

• Handling my own luggage (like lifting a carry-on bag into the overhead bin safely).

• Keeping up with a full day of activity, with the right pacing.

That goal has shaped my desire to stay active for as long as safely possible.

Shifting to low-carb/ketogenic diet

The first meaningful change I made was shifting to a low-carb/ketogenic approach back in 2017 after others in the McArdle’s Facebook group shared their success with it. I was a sugarholic prior and I vividly remember visiting Dr. Haller for a McArdle’s study in Dallas – staying at the hotel next to his office which offered “free unlimited fresh-baked cookies” every evening at 7pm. I had a handful of them two nights in a row for “dinner”. But I was so tired of feeling crampy, tired and irritable that I swore to Dr. Haller the next day that I was going to “try” keto. 

Dr Haller told me that if I was going to try it, commit for at least 90 days because there is an adjustment period where the body is shifting how efficiently it uses fuel (from glucose to fat oxidation), and that can take time. After 90 days, I recognized how much easier it had become for me to get into second wind, and not have to stop mid-task all the time.

I have been on some version of low carb or keto ever since (except for breaks for special occasions/holidays, because I am not a robot). It also helped me with early signs of insulin resistance, and (for me personally) made it easier to start exercising following a very cautious, evidence-informed approach, including warming up carefully to reach second wind before aerobic activities.

Learning about strength training

A few years later, after the McArdle’s presentations at the AGSD conference in Houston in 2019, I started carefully strength training using protocols designed specifically for people with McArdle’s (based on work by researchers like Alfredo Santalla and others). Their work is in the Training Support guidelines on the IamGSD website, it includes:

• Using the six-second rule for anaerobic movements (i.e. doing short sets with low reps under 6 seconds per muscle – for example, 4 bench press reps under 6 seconds).

• Taking long rest periods between sets (resting a muscle/muscle group for 2.5 to 3 minutes between sets).

• Focusing on consistency rather than intensity.

• Increasing weight slowly over time – for example, I went from having to use an adapted 15 lb/6.8 kg barbell for bench press, to now using the standard 45 lb/20 kg barbell, and adding weight to it. 

Progress is good - with the weights I am almost up to a 1 repetition maximum bench press for an average woman of my age/size WITHOUT McArdle’s.)