Tag Archives: multiple sclerosis

Fridays: ‘Ask an MS Expert’ webinars

12 PM Central Time on Facebook at National MS Society

or on the web at https://www.nationalmssociety.org/MSExpert

For the website you have to register first. If you miss it live, you can also find the recorded webinars there.

Bring your Covid questions or anything else.

Another encouraging study on stem cells for MS

https://www.sciencemag.org/news/2019/01/some-multiple-sclerosis-patients-knocking-out-immune-system-might-work-better-drugs

Seems like we’re getting closer to stem cell therapy for MS. This latest study combining chemotherapy to remove the old immune system, and stem cells to reset a new immune system, shows positive results for putting the brakes on MS, compared with people on other disease-modifying treatments. (However, it was done before Ocrevus was released.)

The best thing is that the most dangerous results of previous studies are just not there anymore: that dramatic study reporting great gains from a few years ago contained a significant number of deaths as well, but this seems to no longer be a problem. Primary progressive was not factored into the study, but the treatment is not generally available to anyone else yet either. Still, this is progress.

Dot + fan = Relief

Summer heat! One very useful gadget helping me this year is the Alexa Dot. Whenever I’m hot I turn on my fan, by voice. You don’t have to get up when you’re feeling wobbly and weak. Dot $40 plus $18 for adapter that controls three devices (fan, light and computer). A great purchase for me.

FMD + 165 The End – For Now

Here concluding this little experiment, with little results to show. It’s been a long time since my last update, because the past weeks have been busy ones. New doctors with new ideas about symptom management and course of treatment. The biggest step was receiving a baclofen pump implant in early December to control muscle tone, spasticity and associated pain. The results have been mixed: relaxation of a contracting leg, disappearance of chronic low-grade pressure sores, and alleviation of pain and muscle cramping – all positives. On the other hand, one of our chief hopes was to relax arm tightness for better control of my wheelchair and my dinner spoon – which happened in neither case, and if anything, got worse. But these were the same problems I was having for most of 2016, and were the ones that drove me to try the Fasting Mimicking Diet in the first place.

The FMD produced no noticeable improvement in these key areas leading up to baclofen pump surgery on Day FMD + 116, and certainly after that day of great change we can no longer identify exactly what is driving any improvements I notice. So my only conclusion here is that by Day 116, FMD yielded no appreciable results.

That said, once the effects of the baclofen pump pan out and become my new normal, I look forward to revisiting the FMD and tackling the second protocol that was described by the Longo study. The published results were too promising to ignore. Most likely I will be back blogging about that second attempt, hopefully this summer.

FMD + 54 (10-17-16)

As autumn weather continues, I still feel pretty good and strong – definitely better than when I started this. Now whether that’s due to diet, weather or something else entirely, we cannot tell. In the meantime though, we did make an interesting discovery, one that illustrates how hard it is to identify exactly what lies behind these changes.

A week ago my wheelchair tech replaced a panel of toggle switches on my chair. This set of switches controls mostly seat position, i.e., tilting forward and backward, reclining all the way flat, that kind of thing. It had stopped being useful to me because I switched to adjusting my chair position using joystick controls (a great feature of Permobil chairs) ever since my fingers lost the ability to work the toggle switches. Still, my caregiver uses the toggles while dressing and transferring me, so we went ahead with replacing the panel because it was cutting out more and more due to wear on the cord. Now we have the new panel which does not go dead like the old one, but that’s not the biggest or most surprising improvement.

It’s a shock to find that I can work the toggle switches again, controlling seat position just as well as I used to. The old set of switches must have corroded over time to the point where I could no longer use them—and given my condition we simply assumed that the deterioration was all me, part of a larger physical downturn we had been noticing. Well, no, it wasn’t. In fact, these new switches are so sensitive that now I accidentally reposition my seat while trying to drive the wheelchair. (The heel of my palm drops down on the switches as I push the joystick.) I must relearn how to drive the chair safely.

It’s hard to be scientific with multiple sclerosis.

FMD + 27 days (9-20-16)

Compared to my weakest point at the beginning of the experiment, I notice marginal right hand and arm strengthening, and it’s sustained over several days. Fine motor is a little improved, though I still have trouble with my wheelchair toggle switches, for instance. However, the weather has cooled into autumn, with much less humidity: I typically feel better at this time of year.

Day FMD + 5 (8-29-16)

The weakness I felt last Tuesday, my final day of Fasting Mimicking Diet (FMD), proved temporary. The next two days I felt great. My hand was stronger and better at controlling my wheelchair, for instance. However, for the weekend following, the weakness returned to my hand. (Temperatures in the low-to-mid 80s, and heat indexes slightly higher with dew points up to the low 70s. I stayed in the AC.) Yet on Saturday morning, I fed myself a bowl of food, which I hadn’t been able to do for a few weeks. The weakness did set in later.

Today, on Day FMD + 5, I feel kind of in the middle: not weak, but not ready to set any records. I will continue observing and noting results. Looks like it will not be a straight line of progress.

Week 2 Day 3 – 8-24-16 – 10% calories = 205 target

Breakfast = 41
gazpacho 39, ?, ?, 0, 12 oz
Coffee 2, 0, 0, 0, 8 oz

2 cups Broth blended with 17 g mustard greens & 15 g broccoli = 10 calories

Lunch = 29
Spinach 8, 1, 1, 0, 33 g
Broccoli 11, 2, 2, 0, 31 g
Onion 9, 0, 0, 0, 22 g
Lemon juice 1, 0, 0, 0, 1 teaspoon
Rice vinegar 0
Smoked salt 0

2 cups Broth blended with 17 g mustard greens & 15 g broccoli = 10 calories

Lunch = 54
Spinach 8, 1, 1, 0, 33 g
Broccoli 11, 2, 2, 0, 31 g
Onion 10, 0, 0, 0, 25 g
Rice vinegar 0
Smoked salt 0
Sautéed in broth.
Almond cashew milk 25, 1, 0, 2, 1 cup

Dinner = 15
Grape tomatoes 75 g of mixture
Cucumbers
Onions
Diced and marinated in rice vinegar, Italian seasoning, and sea salt.

Snacks = 45
Figs 37, 1, 1, 0, 50 g
Celery 8, 1, 1, 0, 50 g

204 total

Notes: Weakness and muscle tone. Didn’t do much today. Last day of Fasting Mimicking Diet. Note to observe any effects in the next 3-6 months.

Week 3 Days 1 & 2

Week 3 Day 1 – 8-22-16 – 50% calories = 1,025 target

Breakfast = 170 calories
Rolled Oatmeal 75 calories, 3 protein, 2 fiber, 1 fat, 20 g (¼ cup)
Almond milk 20, 1, 0, 2, 1 cup
Orange 62, 1, 3, 0, 131 g
Maple syrup 9 (½ teaspoon)
black coffee 4, 0, 0, 0, 2 cups

Lunch = 351
Kale patty 181 calories
calabacitas 81 calories, 147 g
Dried apple 60 calories, 20 g
Large fig 7 calories, 10 g
Almond milk 20 calories, 8 oz
Black coffee 2, 8 oz

Dinner = 497
Mexican spice red lentils 239 http://mylifecookbook.com/2016/04/15/mexican-spice-red-lentils/ (by Denise Wright)
Red potatoes 133, 2, 1, 0, 191 grams
Guinness 125, 0, 0, 0, 12 ounces

1018 total calories
Week 2 Day 2 – 8-23-16 – 10% calories = 205 target

Breakfast = 41
gazpacho 39, ?, ?, 0, 12 oz
Coffee 2, 0, 0, 0, 8 oz

2 cups Broth blended with 17 g mustard greens & 15 g broccoli = 10 calories

Lunch = 28
Spinach 8, 1, 1, 0, 33 g
Broccoli 11, 2, 2, 0, 31 g
Onion 9, 0, 0, 0, 22 g
Rice vinegar 0
Smoked salt 0

2 cups Broth blended with 17 g mustard greens & 15 g broccoli = 10 calories

Lunch = 54
Spinach 8, 1, 1, 0, 33 g
Broccoli 11, 2, 2, 0, 31 g
Onion 10, 0, 0, 0, 25 g
Rice vinegar 0
Smoked salt 0
Sautéed in broth.
Almond cashew milk 25, 1, 0, 2, 1 cup

Dinner = 15
Grape tomatoes 75 g of mixture
Cucumbers
Onions
Diced and marinated in rice vinegar, Italian seasoning, and sea salt.

Snacks = 47
Figs 37, 1, 1, 0, 50 g
Celery 8, 1, 1, 0, 50 g
Coffee 2, 0, 0, 0, 8 oz

205 total

Notes: No weakness or lightheadedness on this 10% day: intermittent broth for the win, which I beefed up with broccoli, plus allowed myself a short nap. Physically, my “good” hand has been stronger the past few (3-4?) days, so that I’ve driven my wheelchair better, something remarked by my wife. Is it an effect of this program? Or the result of cooler, fall-like weather during that same time?

Week 2 Day 3 – 8-17-16 – 10% calories = 205 target

Breakfast = 41
gazpacho 39, ?, ?, 0, 12 oz
Coffee 2, 0, 0, 0, 8 oz

2 cups Broth blended with 17 g mustard greens = 4 calories

Lunch = 32
Spinach 8, 1, 1, 0, 33 g
Broccoli 14, 2, 2, 0, 40 g
Onion 10, 0, 0, 0, 25 g
Rice vinegar 0
Smoked salt 0

2 cups Broth blended with 17 g mustard greens = 4 calories

Lunch = 57
Spinach 8, 1, 1, 0, 33 g
Broccoli 14, 2, 2, 0, 40 g
Onion 10, 0, 0, 0, 25 g
Rice vinegar 0
Smoked salt 0
Almond cashew milk 25, 1, 0, 2, 1 cup

Dinner = 15
Grape tomatoes 75 g of mixture
Cucumbers
Onions
Diced and marinated in rice vinegar, Italian seasoning, and sea salt.

Snacks = 47
Figs 37, 1, 1, 0, 50 g
Celery 8, 1, 1, 0, 50 g
Coffee 2, 0, 0, 0, 8 oz

200 total

Notes: This day went smoothly, better and stronger than yesterday.