Tuesday, March 30, 2010

Driven to Exhaustion

Janet writes: We spent most of the day driving yesterday. First we drove a little over an hour west to pick up Tim’s parents. Then we drove three hours southeast to visit Tim’s aunt (his father’s sister). It was her birthday, so we went out to lunch and spent some time visiting. After that, we drove about 15 minutes further south to show Tim’s parents where I grew up, as they are not familiar with that part of the state. Finally, we drove back home, taking an alternate route due to road construction. Tim and I left the house at 7:00 a.m. and returned home at 8:30 p.m. Looong day, but very worth it so that Tim’s dad could see his sister.

This morning we were both exhausted and I could tell that Tim’s brain just wasn’t clicking into gear. He was very slow to get out of bed and a bit absent minded while getting ready to leave the house. Morning is usually Tim’s better time of day, so he only acts this way in the morning when he’s overdone it the day before. He will be fine after a large cup of coffee and some time spent with his men’s group from church.

We usually try to manage our activities to prevent too much fatigue. Tim will hit is “wall” and he will stop to rest. When he is very involved in a project, however, he forgets to stop and wants to push through until it’s done. If I don’t make him stop, he ends up overtired the next day. Most of the time I am able to get him to rest, but on days like yesterday, that is not possible. When the day prevents rest breaks, we just have to plan on being tired the next day and doing what we can instead of what we feel we have to.

We try not to have days like yesterday too often, but when we are helping our elderly parents, it’s not a bad thing. We will get over being tired, and we helped Tim’s aunt to have a happy birthday!

Saturday, March 27, 2010

Children with MS and Cognitive Function

All the people we know who have MS are adults, but this disease affects children too. Here's an interesting article on the affects of MS on the cognitive function of children and how it can affect their performance in school:

Saturday, March 20, 2010

Finding the Files

Tim writes: My wife taught me how to make hard boiled eggs a couple of days ago. I know this isn’t that hard a task, but I have difficulty finding the files in my brain to complete the steps in the right order. If I would boil eggs every day, the steps would probably stick with me, but I don’t eat that many eggs!

Janet writes: Tim talks about finding the files in his brain whenever he is learning something new. We acquired this term from a couple of different medical professionals who spoke to our local MS support group about cognitive symptoms and MS. Both speakers were answering questions about the cognitive symptoms of MS vs. the cognitive symptoms of Alzheimer’s disease.

These speakers compared the brain to a library or a computer hard drive. When you have cognitive symptoms with MS, all your files are still intact on your hard drive. It becomes more difficult to open up those files or store new files, but with time, practice, and adaptations like written reminders, you can still open those files and retrieve the data. Retrieval does become more difficult if cognitive symptoms advance, but they usually stay stable if your MS is managed overall. In Alzheimer’s disease, the files gradually become corrupted and you can’t open them. Advanced cognitive symptoms in MS can resemble Alzheimer’s, but the mechanisms involved in the progression of these diseases are not quite the same.

Don’t spend a lot of time worrying about your MS cognitive symptoms turning into something similar to Alzheimer’s disease. Most people who have cognitive symptoms with MS stay fairly stable with their cognitive functioning. I am not sure how much research has been done comparing MS cognitive symptoms and Alzheimer’s disease, especially concerning primary or secondary progressive MS. If anyone would like to comment on this topic, we would really appreciate it!

Monday, March 15, 2010

Fish Oil Problem

Janet writes: Stocked up on vitamins again Saturday. All the doctors Tim and I have encountered recently have pushed the virtues of Vitamin D and Omega-3 for MS. Take Vitamin D to prevent MS. Take Vitamin D to help MS symptoms. Take Omega-3 to help your cognitive skills. When we heard how much Vitamin D and Omega-3 you’re supposed to take for MS, we found that we were falling a little short. One doctor recommended 5000 mg of Omega-3 per day. Tim was taking 1200 mg. Ooops! He had better pound down a few more.

Here is what the NMSS has to say about Omega 3:

Fish oil, the primary source of Omega-3, comes in gel cap form these days. Not like when my parents were kids and were forced to take cod liver oil. I’ve never tried the stuff, but I’ve heard it’s terrible. Anyway, I’d much rather take gel caps, but I had a little problem the other day. Omega-3 gel caps are quite huge, over an inch long, and I take four per day, usually two at a time. This time, however, I somehow managed to take two at exactly the same time – they stuck together and slid down my throat joined side by side. Ouch!!! I felt like I had a boulder stuck by my voice box. It took me ten minutes to get them down. Talk about a sore throat!

I still take four Omega-3 gel caps every day. One at a time!

Thursday, March 11, 2010

MS Awareness Week

So, this is the official MS Awareness Week and we're all wearing our orange shirts. According to the National Multiple Sclerosis Society, MS affects about 2.1 million people worldwide. In our lovely state of Wisconsin, it affects about 1 in 500 people. Around here, if you don't have MS you know someone who does.

About half of people with MS experience cognitive symptoms - at least, this is the current estimate by the MS gurus. Cognitive symptoms can include short term memory loss, difficulty finding the words you want to say, difficulty processing information quickly, and problems with executive functions such as problem solving and sequencing. Most people can adapt to these symptoms by slowing down, simplifying daily activities, and using memory aids. Staying in shape and managing symptoms of depression can help lessen the effects of these cognitive symptoms.

That's it for our shameless plug for MS Awareness Week. We have the Walk MS event coming up in about a month and Tim is raising money online. Here's his page:

Let's hope it doesn't rain...again!

Sunday, March 7, 2010

Out of It

Janet writes: Tim had a bad night last night. It was the first night in a long time that he could not sleep. He said that a million thoughts rushed into his head and he couldn’t get them to settle down. This morning he is tired and can’t process his thoughts to organize himself for the day. He came in the kitchen and just stood there for a couple of minutes. Then he disappeared into the bedroom, not coming out until I felt the need to check on him. He said “I’m just out of it.”

When Tim is restless like this, I usually end up waking up and he usually ends up talking to me about all those thoughts. Afterward, he falls asleep and, if I’m lucky, I do too. This all happens at 2 o’clock in the morning, of course. Anyone reading this that has MS can probably relate to this little scenario. Insomnia is a common symptom of MS.

Tim says that he seems to get this way the week before his Tysabri infusion. A little out of it, a little more disorganized. His memory seems to slip more and it takes him a longer time to sort out and process information. After his infusion, he is better again. Does anyone else have this type of thing happen. Can the effects of Tysabri “wear off”?

Tim will be fine today once he gets going. He will probably have to pound couple cups of coffee, however, so that he doesn’t fall asleep in church!

Tuesday, March 2, 2010

Jeffrey Gingold Article

If you visit the Staying Smart website sponsored by MS Trust, you will see a series of videos that show a discussion of MS cognitive symptoms between Jeffrey Gingold and people with MS from all over the UK. Mr. Gingold has written a wonderful article about his experience that now appears on the MS Trust website. It's worth the 10 minute read, so check it out here:

The Staying Smart website has numerous resources for people experiencing the cognitive symptoms of MS. If you have never visited this website, go there now: