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Julie  Stachowiak, Ph.D.

Multiple Sclerosis Blog

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Multiple Sclerosis and Driving

Saturday May 31, 2014

I stopped driving for over 8 years because of my multiple sclerosis (MS). I found it scary to be behind the wheel in a way that is very difficult to describe. I just was never sure that I was doing the right thing or would be able to react to something happening on the road correctly or in time.

Studies show that people with MS do have very real challenges when driving. Encouragingly, research and practical work has demonstrated that people with MS can be "rehabilitated" to be able to be very safe and confident while driving.

Read the full article: Driving and Multiple Sclerosis

Q. How does multiple sclerosis impact my children?

Saturday May 31, 2014

A. Any parent with multiple sclerosis knows that MS definitely introduces challenges to an already difficult job. Taking care of children at different ages can be physically grueling, and some of the fatigue and mobility symptoms that come with MS can really intensify the challenges for parents, even resulting in activities that get canceled and a "smaller" world for kids that have to adapt when Mom or Dad just can't do things.

I know that a big source of guilt and questioning for me in my parenting role stems from my cognitive dysfunction, especially as my children get older. I am often unable to answer a simple question or carry on an interesting conversation as my thoughts are several steps behind those of the young minds in front of me.

The situation is not all bad, however. In writing on this topic, I found that there are actually some advantages for kids growing up with a chronic illness in the family, despite all of the challenges. There are also things we can do to ease some of the harder parts of having a parent with MS.

Read the full articles: How does MS impact my kids? Part 1 and Part 2

The MS Symptoms That Come and Go

Wednesday April 30, 2014

I'm writing to remind you that as things start to heat up, you may experience more paroxysmal symptoms. These are those lovely MS symptoms that appear and make things difficult or uncomfortable for awhile, then go away as quickly as they showed up.

My special paroxysmal symptom is nystagmus. This is when my eyes "jiggle" from side to side - I don't see them do it, but it manifests as my vision being "wavy" for about 10 minutes. It comes (usually when I get hot), affects my vision for awhile, then goes away and I forget about it.

I used to panic at these symptoms, but now I use them to remind myself to slow down and enjoy what I have (there is not too much else I can do anyway during these episodes). While I am visually impaired for these periods, I take the opportunity to think about something that makes me happy, like being in the mountains. By the time the whole thing is over, I have had a nice little "mental vacation," rather than focusing on my MS symptoms.

Knowing that these symptoms do not signal a relapse is certainly a helpful part of the process.

What about you? How do you cope with your paroxysmal symptoms? Give us your tips in the comments section below.

Read more:

Daily Physical Activity and MS

Wednesday April 30, 2014

Just yesterday, it was mid-morning and I was sitting on the couch in a stupor. I had just gotten up about an hour before, yet I felt like I was at the very end of a very long day. I was groggy and not entirely happy.

My husband said, "Why don't you go for a walk?" I was about to snap at him when he reminded me that I had encouraged him to remind me to move around when I was like this.

As much as I hated to do it, I did it. I actually convinced one of my daughters to walk to the grocery store with me. By the time we got there (about 4 blocks away), my outlook was completely different. I was much more energetic and in a fine mood.

I have honestly never (or very rarely) regretted any form of physical activity, once I have actually engaged in it. Even more so, I pretty much always feel better afterwards (given that it is not too long and not too hot outside).

The article below encourages us to work daily activity into our days. This is not specific to people with MS - everyone should do it. Even for those mythical people that have a formal exercise routine, the moving around to feed the dogs, make dinner, pull weeds, get the mail, etc. all has benefits. Give it a try next time you find yourself staring into space, dreaming of getting back into bed.

Read the full article: A New Approach to Exercise and Multiple Sclerosis

Do you and your MS doctor share decisions?

Wednesday April 30, 2014

This is an interesting topic for me. I know that many people are used to going to the doctor, reporting symptoms and getting handed a prescription. Most of the conversation typically has to do with clarifying timing and severity of symptoms.

It's funny - one woman I know spends a great deal of time negotiating with waiters about exactly how she wants her food prepared and what she is willing to compromise on in her specifications (which is almost nothing). However, this same person is very unhappy with the course of treatment that her doctor has chosen for her, but refuses to say anything to him about her displeasure and what she would like to change. When I asked her about this, she says, "But he's a doctor and I'm just a patient. I'm not allowed to have opinions, because I didn't go to medical school." So, she typically ignores his prescribed treatment or only half-heartedly follows his recommendations.

I wholeheartedly disagree with this. I believe in what is called "shared decision making," where the doc brings his or her "book learning" to the table and the patients (us), bring our life experience, our preferences and our desired outcomes to the partnership.

What about you? What is your relationship with your doc? Is it a partnership or more of a dictatorship? Let us know in the comments section below.

Read the full article (I've also included some links to help inspire you to go "doc shopping" if you are not thrilled with your current MS doc): Your MS Doctor as Your Partner in Health

Marijuana for MS Does Have Its Limits

Wednesday April 30, 2014

I am a huge fan of the use of medical marijuana to lessen MS symptoms - I know it can lessen pain, tremor, spasticity and a host of other malfunction or discomfort that our bodies present us with.

However, I am not really a candidate for medical marijuana (even if I lived in a state where it was legal), as my main symptoms are fatigue and cognitive dysfunction, which are not indications for its use.

The American Academy of Neurology (AAN) released a set of guidelines addressing the appropriate use of medical marijuana, supporting it for the use of many MS symptoms. Equally important, though, is the fact that it can have serious side effects, like any drug. It can cause seizures, depression, dizziness, fatigue - all conditions that those of  us with MS are already prone to. Also, marijuana is found to be ineffective or of questionable effectiveness in other neurological illnesses, such as Parkinson's and epilepsy.

The point of all of this is not to bash marijuana by "going all establishment" and invoking the AAN. My mission here is to provide another viewpoint to consider when thinking about using pot to help your symptoms. Like every single other therapy, it is really effective for some people and simply won't work for others. My recommendation is to learn about all the warnings and recommendations and follow your gut and do what you think is right, monitoring closely the effects that you get from whatever you do.

Have you tried medical marijuana? Let us know what happened in the comment section below.

Tried Probiotics for MS Constipation?

Wednesday April 30, 2014

Lately, regardless of what I do, I have been extremely constipated. I follow all of the standard recommendations - I eat huge amounts of fiber, drink more water than I ever thought possible, I exercise, I try to keep a regular schedule - all of the strategies that are supposed to keep things moving. I take stool softeners, but am not a huge fan of temporary solutions.

I was so frustrated that I went to my local Whole Foods and headed for the "Digestive Aids" section of the supplement area. A young man asked if he could help me and I told him all of my travails with my constipation (I figure he's heard weirder things).

He confidently said, "You need probiotics. Trust me, I know." Since I was in a hurry, this was all of the scientific evidence I demanded. He recommended Dr. Ohhira's original probiotics, saying that people with irritable bowel syndrome and gastric reflux and all sorts of other things really benefited from these.

While they were expensive (about $35 for 30 pills), I was desperate. I took two before bed and hoped for the best.

That was three days ago and I am a changed woman. I feel fantastic. I have been able to have bowel movements - in fact, my weight is down 3 pounds from getting rid of the extra baggage. I read tons of reviews of this product and people with all sorts of maladies swear by it.

Has anyone else tried this? What were your results? Please leave your story in the comment section below.

PS I should mention that the website (and many naturopaths and patients) recommend a "loading period" of 6 days, where you take 5 pills in the morning and 5 in the evening (on an empty stomach). Having rudimentary knowledge of the gut microbiome, this makes sense to me and I have done this with only excellent effects. One note - as I am not a medical doctor (I'm a PhD researcher), I'm writing to share my experience, not to make any recommendations.

Marijuana Pills and Spray May Help MS Symptoms

Monday March 31, 2014

With Colorado recently legalizing the use of medical marijuana, people love to ask me if I would use it (I think they really want to know if I am currently using it) for my MS symptoms. They are no doubt disappointed when I tell them that I would definitely use it if I had spasticity or other symptoms, but those aren't my biggest problems. Since my main symptoms are fatigue and cognitive dysfunction, I cannot imagine that pot would do anything but make those worse (but I probably wouldn't care about them as much if I did use some marijuana).

The American Academy of Neurology just released guidelines on the use of complementary and alternative medicine in multiple sclerosis and concluded that oral cannabis extracts, tetrahydrocannabinol (THC), and a cannabinoid mouth spray might be useful in relieving spasticity and pain. Read more about these guidelines here.

Have you tried any of the cannabis therapies? Share your experiences with these therapies in the comments section below.

 

 

Body Temperature and Multiple Sclerosis Fatigue

Monday March 31, 2014

I had no idea that resting body temperature could be different among different groups of people (who did not have an infection, that is). Turns out that it can.

In this study, researchers took the temperature and tested 40 healthy controls, 50 people with relapsing-remitting MS (RRMS) and 22 people with secondary-progressive MS (SPMS) for general fatigue, physical fatigue and cognitive fatigue. Here is what they found:

  • Body temperature (taken with an aural - in the ear - thermometer) was highest in people with RRMS at 37.04 degrees Celsius (98.67 degrees Fahrenheit). Normal temperature is 36.75 (98.15).
  • Controls had an average temperature of 36.83 (98.29) and people with SPMS had a temperature of 36.75 (98.15).
  • Warmer body temperature was associated with general fatigue and physical fatigue, but not cognitive fatigue.

While the differences here don't seem like very much, I have heard that a fraction of a degree in core temperature can hugely affect how a person with MS functions. Of course, this is preliminary data, but I know that on hot days, drinking a huge glass of water with lots of ice or taking a cold shower can give me a little more energy.

What about you? Do you know your average body temperature? What are some of your tricks for keeping cool? Let us know in the comments section below.

Read more:

"MS Guilt" and Summer

Sunday March 30, 2014

It's getting closer to high season for what I call "MS guilt." That is the guilt that many of us feel when we cannot do everything that we want to and we are convinced that we are disappointing everyone around us.

This feeling is especially prevalent for me during the summer months. I'm sure that I am much crabbier towards my family. I know that I can't cook as much and my housekeeping skills suffer, as well. The worst part, however, are the times that I am forced to tell my family that I can't do something fun with them because I am just not feeling well - usually because of the heat.

What about you? How do you handle this feeling? Share your stories and tips with us in the comments section below.

Read the full article: Do you have "MS Guilt?"

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