A Multiple Sclerosis Moment

Do you ever have memory challenges? I know that the ability to retrieve the memory (not to actually remember but to retrieve the memory itself) is troublesome for those of us with multiple sclerosis. My husband will tell that I did or said something and I have no recollection of doing so. He and I both know it is the multiple sclerosis but this whole memory thing continues to baffle me. Let me share a funny thing that happened to me.

In April I went to Chicago and I was looking for my favorite "city" purse (one that I can sling over my shoulder and keep my hands free for shopping). Well, I couldn't find it. I was crushed when I had to take a "substandard" bag with me just for the convenience.

For two months since thenI have looked all over for the bag, not believing I could have possibly lost it (I have had this favorite purse for years). I finally started looking for another chic shoulder but to no avail.

Lo and behold, today my cobbler called and said I had a purse in her shop that had been ready for three months. It was my favorite bag. I had taken it in March to be repaired for my upcoming trip to Chicago.

I am astounded that just 3-4 weeks after going to the cobbler, I completely lost the ability to recall the memory of what I had done. When I went to Chicago, I had no knowledge of what I had done.

Wow, multiple sclerosis is very very powerful. However, I am not going to let this multiple sclerosis beat me. I am baffled but will not be beat.

I will say that every once in a while multiple sclerosis does make me giggle and this is one such funny moment!

Are you super stiff?

One of the ways that multiple sclerosis affects me is that my legs, particularly my right leg gets amazingly stiff. I can not sit a long time or walk a long time as both make me really stiff (which makes it worse when I try the next movement). Multiple sclerosis is funny business as you really can not function well at anything.

I am a big proponent of movement. I notice my multiple sclerosis symptoms are less pronounced if I am keeping up continual movement (even when I feel to tired to do so). It is seemingly a contradiction in thoughts but I walk better once I have worked out. However, I do notice that I can not hyperextend my legs as the way multiple sclerosis affects me causes me more problems walking if I am not careful. Does that make sense?

My doctor refers to one of the multiple sclerosis challenges I have as knee-flick-back. When I am tired or have pushed my legs beyond my new range of motion, my knee flicks back to safety. Rather than a smooth movement, it is a snap almost and therefore, causes more stress on my leg.

So the jist of this blog is when it comes to multiple sclerosis, yes, it sucks. However, if you push yourself to just shy of your limit, you'll find that you might be able to hold on to your mobility a little longer.

Peace!

Multiple Sclerosis and Pilates

Have you tried pilates for your multiple sclerosis and mobility? Today I am starting a class that will be once a week and I can't wait. I have done pilates before but I stopped the class early as I had some limitations brought on by my multiple sclerosis. I have even done reformer classes that really irritated my legs causing me more stiffness for quite some time afterward.

However, this pilates is different. My friend who has multiple sclerosis is teaching the class. She is doing this in conjunction with the National Multiple Sclerosis Society. While she was being certified for pilates, she worked with the instructor on necessary modifications for people who have limited movement. Is that great or what?

I am also going to do this in addition to a pilates workout CD at home. I believe I will get similar focus on modifications on a CD as well as not feel so awkward since I may not be able to finish in a big group that is not so multiple sclerosis friendly (as in a regular class at a gym with an instructor who does recognize the limitations of someone who has multiple sclerosis). Make sense?

Multiple Sclerosis and Saturated Fat

I am always trying to lose weight. However, I face a dilemma constantly. I am too tired to really stress about what I eat anymore but I do believe that what I eat impacts my multiple sclerosis (in terms of my walking ability and functionality). Typically, I will stop eating something if I know that it negatively affects me. Well, have I found an interesting little nugget about saturated fat and multiple sclerosis!

We know that multiple sclerosis is an inflammatory disease. It turns out that saturated fat further inflames inflammatory conditions. Now I have to step back a second. I am a big proponent of coconut oil (see my blog www.coconutoilhealthbenefits.com). Coconut oil is full of saturated fat but it is very healthy for most people because of the type of fatty acids composing coconut oil. I even thought it helped with the fatigue that multiple sclerosis often brings.

I stopped taking coconut oil almost immediately out of fear that I am causing more trouble to my multiple sclerosis-ridden body. I also am really rethinking those chocolates I love...not for weight loss but for health in the hopes that I will maintain my current abilities as long as possible!

Are you increasing your mobility with multiple sclerosis?

Are you taking advantage of every possible method to boost your current mobility and help claim your future mobility with multiple sclerosis? I urge you to do everything now to protect your mobility in the future. Multiple Sclerosis is a terrible disease - don't make it worse. Let me tell you what happened to me.

A couple of years ago my doctor told me to be sure I am lifting weights and working out. The doctor indicated that it would help keep the mobility issues surrounding multiple sclerosis at bay. I remember thinking 'any doctor would say that.' He just wants me to be healthier in general and is not concerned about my multiple sclerosis. Boy was I wrong.

I worked out but then a lot of stuff happened last year and for about 6 mos I temporarily stopped. Wow, was I surprised at how much strength I had lost. It was as if the multiple sclerosis was allowed to run rampant on my mobility. When I went back to try to lift weights, I could not lift nearly as much as I could 6 months before. I have stopped weight training and cardio for long periods of time and never experienced this. I could always snap back into it.

A year later, I am still struggling to get near the amount of weight I was lifting. All of this, of course, impacts my everyday abilities and my multiple sclerosis. I lost quite a bit of mobility in that 6 month hiatus. I will not ever intentionally negatively impact my multiple sclerosis again.

My doctor said no to Tysabri!

Multiple Sclerosis is a bear. All of the MS disease-modifying drugs seem to do the same thing which really isn't much (accept feeding on our hopes that the Multiple Sclerosis won't get worse). Last week I went for my my regular neurologist visit and I questioned why she seemed to shy away from Tysabri.

On previous visits my doctor avoided the Tysabri question. She told me that she is not in favor of Tysabri in place of or in addition to the other Multiple Sclerosis disease-modifying drugs. She said the odds were bad. Three people died in 3000 and that was just not good enough for her stamp of approval. I was advised that if I wanted to take it, I would need to find a new doctor to prescribe it.

This info was enough for me. I am no longer on the Tysabri bandwagon as a plausible means to turn my Multiple Sclerosis around. I will say that I think it is important for people to take risks to advance science but maybe this is not a risk I am willing to take.

Nutritional Therapy for Multiple Sclerosis

I was reading through some different books on MS when I ran across this fantastic concept initiated, I believe, by Dr. Swank. From what I understand, Dr. Swank suggests that you eliminate the following from your diet:

- canned food
- frozen food
- processed food
- saturated fat

When you do this, indications are that you minimize the impact of Multiple Sclerosis on your body. Even if you have already had damage to your body! I am a big proponent on the impact of food on the body. It doesn’t matter if you have health issues or not, I believe you will feel like crap if you eat chips and dip or other poor quality food.

It was fabulous to see that Dr. Swank gives those of us hope about turning our life/health around simply by changing what we eat. This is also a great way to lose weight, too (excess weight is just another bodily stressor that compounds our MS symptoms). Rock on Dr. Swank!!