Saturday, July 6, 2013

Switching to Gilenya



Tim has been on Tysabri for over 3 years now. He really likes how Tysabri has helped him maintain or improve his abilities, but he has become worried about developing PML, so he has decided to switch. He will be trying the new oral medication Gilenya. So far, he has been off of Tysabri for a month and has had the vision exam done, but we have heard nothing else. I did call his doctor the other day and received a message back stating that the transition was in process. The nurse also said that Tim has to be off of Tysabri for a few months before beginning Gilenya. Really? That was news to both of us.

While Tim is feeling some effects of being off of Tysabri, such as some increased fatigue and walking instability, his cognitive symptoms do not seem to be affected by the change. In fact, he had cognitive testing done again last week and his skills have actually improved. He made the most improvement on his ability to analyze spatial relations, and either improvement or no change in most other areas. He did decline a bit on his word finding ability, especially if the words start with letter C. Interesting that it would be that specific. I had noticed that Tim has had a little more difficulty finding words, but I have not kept track of whether or not they start with letter c.

We will keep you posted on how this transition goes. Tim will be very happy to not have to deal with needles anymore, but we are both wondering how effective this drug will be. We hope that it will be as effective as Tysabri has been.

Monday, June 17, 2013

Tim and Janet On the Trail - Granite Path

We are going to begin posting here again, and the topics will relate to the many aspects of MS and how they relate to our daily lives. So here is an entry that is not about MS, but MS plays a role.

For Christmas this year, Tim’s daughter gave us a Wisconsin state park sticker. This pass attaches to the windshield of the car and allow the vehicle admission into any Wisconsin state park for the calendar year. We thought we had better use it, so we decided to visit as many state parks as we can this year and hike on the trails. Periodically I will post an entry here about one of these state park excursions, called Tim and Janet On the Trail.

Our first state park excursion was to Governor Tommy G. Thompson State Park in northeastern Wisconsin. This park is located about a half hour west of Crivitz, in river country. We started out in the morning, our car equipped with fishing poles, walking sticks, jackets, bug spray, and a cooler. We stopped to buy gas, a picnic lunch, and bait. Of course, since we are rummage sale addicts, we also stopped at a rummage sale, and then a flea market, and then another rummage sale. So much for our goal of getting an early start. By the time we got to the park, it was lunch time.

We ate our lunch by the side of this little lake, which is surrounded by forest.

 There are no motors allowed on this lake, and the wind was roughing up the water on this day, so there were no boats. In fact the wind was so strong that we had to hang on to our garbage pretty tightly so that we wouldn’t be accused of littering.

We finished our lunch, pulled out our walking sticks, and started our hike by walking in circles. From our parking lot, we could not tell where the trails started! We wanted to hike the Granite Path, so we asked a nearby maintenance worker where it began. He promptly replied that he didn’t know, since he had only been working in the park a few weeks. He did point us in the direction of the trail head, where all the trails started.

We hiked down the trail and up this hill along the power line clearing.

When we got to the top of the hill, we read the trail marker and realized we had hiked the wrong way! This was the Forest View Trail, which is 3.5 miles long. Nope! Not the one we wanted! We hiked another trail that crossed through the woods to the trail we wanted.

Once on the Granite Path, we hiked past several very large granite rock formations.


 When you see these rocks, the first thing you want to do is climb on them, so one formation offers a trail to the top, shown here.


 Judging from the stacked rocks and burned areas, this rock has been quite the party spot in the past.


We also hiked through a very pretty popple forest.

 This little offshoot trail led to Popple Rock, which was the largest rock formation we encountered.

 Popple Rock sits on the edge of the park and extends past the park boundary.


Tim uses walking sticks to keep his balance when hiking, and even though this trail was fairly easy hiking, the sticks came in handy on the down slopes. Tim uses the sticks for support when hiking down hill so that his knees do not give out. Good thing, since I would not want to pick him up!

We saw many varieties of wild flowers, insects, and birds on our walk.



Butterflies and moths flitted around the wild strawberries and columbine, while paintbrush danced along the edge of the trail.




We did not see any animals, but did spot some deer tracks, a few very tiny, meaning that a doe and her fawn had passed through.

This wildlife also came through the park. I think he was taking refuge.

This was a fairly easy and enjoyable hike. Unfortunately, we forgot the sunscreen at home. Tim is now calling me lobster girl!

Friday, January 7, 2011

Cognitive Meltdown Video

Well, we need to apologize for not having updated this blog for so long! Life gets in the way sometimes and it has nothing to do with the cognitive meltdown and more to do with just being very busy.

In September we posted that we were a part of presenting a cognitive workshop in Green Bay, Wisconsin. Janet's daughter, Calysta Phalen, a media student at the University of Wisconsin - Stevens Point, produced a video for that workshop and the video is now available online via the Wisconsin Chapter of the NMSS's Facebook Page. This video shows how we work together to deal with Tim's cognitive symptoms that result from his MS. We hope that this video will give you some ideas on how to manage cognitive symptoms, so here's the link:

Tuesday, October 12, 2010

Discombobulated

Ok, this actually is a word. I looked it up. It means to throw somebody into a state of confusion.



Those of us dealing with the cognitive meltdown of multiple sclerosis know this word well. Tim and I dealt with it this morning as we were trying to organize our day and all the things we have to do. Tim is becoming a busy man, which is a good thing, but it requires him to organize his time, his emails, and many pieces of paper. It also requires him to communicate with more people than what he is used to. The whole thing is causing both of us to become “discombobulated”!


How do we handle it? At least 15 minutes each day to sit down and talk through what we both have to do. Tim enters his schedule into his phone and has all the things he needs to accomplish in writing on one or more lists. He also needs to know my schedule, so anything I am doing that deviates from the normal routine also goes into his phone.


This 15 minutes a day doesn’t always happen. We are busy, or tired, or just plain don’t want to deal with it. The problem with that? Discombobulation! (Yes, this is also a word.) We really have to force ourselves to take our 15 minutes or the whole day can fall apart. It has before. It probably will again. At least we took our 15 minutes today so we both know what we have to do. We are up for the challenge, though, and we will do our best to keep our schedules organized. Call it our “anti-discombobulation” campaign. (No, I didn’t find that one in the dictionary.)


By the way, for those of you who are interested, our workshop went very well and we got some great feedback from the participants. The Wisconsin Chapter of the MS Society is working with us to put the workshop on again sometime next year, so we are looking forward to that.

Wednesday, September 22, 2010

Lauren Parrott on Cognition and School

Here is a new video from Lauren Parrott about her insecurities related to her cognitive symptoms from MS. She makes some very good points about the accommodatons you can apply for while attending university. These accommodations are available at most universities and technical colleges, so don't let MS symptoms stop you from going to school.




By the way, our workshop went very well. We hope to post some information from it when we have it organized.

Thursday, September 9, 2010

Back to School?

This blog entry from Bonnie Groessl, MSN, APNP, emphasizes the importance of learning to slow down the damage to the brain that aging can cause. While people with MS need more repetition to learn new things, they can still do it and should. Don't tell yourself that you can't learn anything because you have cognitive symptoms. You can learn new things with a little extra effort and some adaptations to help your memory.

Does this mean go back to school? No, not if you don't want to. Learning can involve anything from reading a book to learning a new hobby or sport to finally figuring out how to program that darn DVD player! Read Bonnie's blog to see why learning is so important.

Tuesday, September 7, 2010

Cognitive Meltdown Workshop This Weekend!

The workshop we helped to organize is this Friday and Saturday, September 10 and 11, at the Tundra Lodge in Green Bay, WI. We are pretty excited about it - wish us luck!

Wednesday, August 18, 2010

Switch to Generic?

Janet writes: Our health insurance company insists on generic medications when they are available. We can get brand name, but our doctors must specifically prescribe and pre-authorize these and we have to pay a higher co-pay. Most of the time it’s not an issue.


This past week, however, it was a pretty big issue. Most people with MS are on some type of anti-depressant, and Tim uses Effexor. Well, the generic form of Effexor was recently approved and, of course, our insurance company automatically switched his prescription. We didn’t think anything of it, but after a day or two taking these capsules Tim started complaining of dizzy spells, more anxiety, more difficulty focusing, and more word finding problems. He also started his “wobbly walk” thing again.

We called the doctor, explained the drug switch, and the doctor put him back on brand name Effexor. This required a couple of days to allow the prior authorization to go through. By yesterday, after not having had his drug for almost a week, Tim had a fairly major “meltdown” that was so bad he couldn’t even describe it to me. (Other than the tremors which I could see.) Let’s just say I was ready to haul him into the emergency room. I called the drugstore, however, and the prescription was ready, so I picked it up and he took one right away. After a day and another pill, he is fine and out on the lake fishing.

So the moral of this story is, don’t let your insurance company switch your medications without approval from your doctor. Even if the active ingredient is the same, the inactive ingredients may not be, and you may not react to these medications the same way that you react to the brand name drugs. This doesn’t mean that generic medications are bad, and they do save you money, but please make sure they are the right medications for your condition before making the switch.

Here’s a short, easy to understand article on the differences between brand name and generic medications:


Wednesday, August 4, 2010

CCSVI and the Emotional Journey by Angela

This YouTube video, CCSVI and the Emotional Journey, was produced by Angela, who crusades for CCSVI treatment through her website, http://www.flowers4ms.com/. While Angela's primary topic in this video is CCSVI, she also speaks about cognitive decline, Tysabri treatments, PML, and frustration with the medical establishment - all topics that those of us dealing with the "cognitive meltdown" can relate to. You might find yourself nodding in agreement with some of her statements.


Saturday, July 31, 2010

Cognitive Meltdown Workshop

When we started this blog, we were working with some members from our local support group on an idea for a workshop to address the topic of cognitive symptoms in MS and how these symptoms affect relationships with support partners. After a lot of time and work, the workshop is put together and scheduled! We really hope that we can help some people address the cognitive issues they are experiencing and how to handle those issues with their families. Here's the link for more information:

Thursday, July 8, 2010

Cognitive "Melt"Down

Hot, hot, hot. Hot and steamy. When did we move to the Amazon? Tim is wearing his cooling vests so much, I’m not sure they will last through the summer!


The hot weather causes fatigue, of course, and that causes the cognitive symptoms to kick up. Tim spent yesterday morning fishing and yesterday afternoon taking a nap because he really couldn’t do anything else. He was better by evening and admitted that the heat had wiped him out. Sleep and cool indoor air fixed the problem. I feel bad for anyone who does not have access to air conditioning in this weather.

If you don’t have a cooling vest and want to get one free, you can apply for one through the Multiple Sclerosis Association of America. Their program allows you one free cooling vest, plus wrist cuffs and a neck wrap. Here’s the link:
 

Tuesday, June 29, 2010

Blueberries!

Janet writes: Tim doesn’t care for summer due to the heat. We usually spend June, July and August with the house shut up and the air conditioner humming away. I have to go outside to thaw out periodically. But one reason we like summer is that fruit is in season again, especially blueberries!
We live in Wisconsin, so blueberries are usually expensive. Starting in June, however, the price comes down and supply becomes more abundant, so we buy them every grocery shopping trip. We put them on cereal or oatmeal, or just eat them plain. They are delicious!


If you are health conscious, you will also know that blueberries are one of the healthiest foods you can eat, especially for brain health. These berries are nature’s little memory pill. Blueberries have the highest antioxidant levels of any fresh fruit and the vitamins and minerals they come packed with all assist in promoting healing of damaged brain cells. There are many articles about the health benefits of blueberries online. Here’s one that gives you a list:






So have a happy summer and eat a whole lot of blueberries!

Monday, June 28, 2010

ILiveWithaDisability.com

Found this fairly new website this morning. Created by Scott Sussman, this is a social networking site for people with disabilities. The site has been up for about a month and promises a safe network to allow you to post your feelings, opinions, etc. about your disability. Family and friends can join as well. Check it out here:

Monday, June 14, 2010

It's Not Easy

Janet writes: I apologize for the couple weeks of silence from us. Between health problems and issues with children, we have been a bit preoccupied. Solving all these problems puts the ol' brain into high gear for a while, and when you are dealing with the cognitive symptoms of multiple sclerosis, that high gear eventually burns out and leaves you on the side of the highway. Anyway, things are settling down slightly, so I wrote the following: 

We read a lot of information about multiple sclerosis and about health problems in general. It seems everyone is an expert and everyone has their little niche of advice to give. “Use a pocket planner.” “Take fish oil.” “Get enough vitamin D.” “Get a Blackberry.” And so on. We all want that one little thing that will make all our health problems better, and many people are perfectly willing to step up and hand it to us. I’ve done it myself – and I should know better!



The fact is, even with all the gadgets, vitamins, and special helps, living with the cognitive symptoms of multiple sclerosis is not easy. Life has a tendency to bombard you at times, and all the calendars in the world don’t compensate for that feeling of being overwhelmed. Four capsules of fish oil might help the memory click along a little better, but they don’t stop the mid-day crash when all body systems go into “sleep” mode, including the brain. Tim becomes very frustrated when he can’t finish a project because his head won’t let him or when he has to check his phone calendar five times because he can’t remember if he entered something correctly. My own patience wears a bit when I have to remind Tim of appointments or other things multiple times in a day. We both feel like we get stuck in the cognitive mud and the only thing that will pull us out is a good nap!


I guess what I’m saying here is don’t expect a miracle cure for the cognitive symptoms of multiple sclerosis, but don’t give up on living either. All the compensation techniques, gadgets, and vitamins might not be “the answer”, but they can get you through a day. At least, they can pull you along until nap time!

Tuesday, May 25, 2010

World MS Day

Tomorrow is Janet's son's high school graduation day. It is also World MS Day. What a great time for everyone to acknowledge the widespread effect of multiple sclerosis. Our Wisconsin Chapter of the National MS Society serves over 10,000 people in the state. We guess that Tim will not be the only one in the gym tomorrow night who has MS.

Here's an eye-catching video that emphasizes how many people around you have MS. Thanks Lisa!

Tuesday, May 18, 2010

Change It Up

Janet writes: Tim and I had an argument the other day over a project we are working on. The argument started because I was attempting to explain something to Tim and he was feeling overwhelmed by how I presented the information. He responded by plugging his ears, which ticked me off, of course. The project ended up thrown in his lap.



After we were both cooled down, we left the house so we wouldn’t be disturbed and tried again. Tim still didn’t understand me, so instead of talking, I proceeded to write everything down and had him read it. Success! He understood what I was talking about. He had questions, I wrote down the answers as well. More success! We were able to resolve our argument and finish our project in about an hour.


This strategy is used by teachers every day when teaching students, and can be very useful in your house if you deal with the cognitive symptoms of MS. We all know that MS acts differently from day to day. Your ability to take in and process information may also differ from day to day. One day, you may understand what you hear right away but have to read the same sentence five times to understand it. The next day it might be the opposite – you feel overwhelmed by anything you have to listen to, but can scan a page of writing and understand it just like that. And there are some days where you just have to do it before you get it.

 
If you feel like you are having difficulty understanding something important, try changing the way you get the information. If you can’t read it, have someone read it to you. If you can’t listen to it, get it in writing. If both are escaping you, have someone help you with a sample or demonstration. One way or another, that information will get into your brain. Oh, and a helpful hint – don’t plug your ears when your spouse is trying to talk to you. You will not have any trouble understanding their reaction!!!!

Tuesday, May 11, 2010

NEW Website

We attend a monthly MS support group in Green Bay, Wisconsin, and for the past year our group has had a website under construction. Why has it taken a year? Well, we don't really know, but as with anything connected to MS, we can bet the cognitive meltdown had a little something to do with it. Anyway, it is finally finished and functional! Hooray! We are pretty proud of it. Here is the link:

Thursday, May 6, 2010

We Need to Read This Book!

Janet writes: I stumbled across this interview today with Barbara Strauch on how the middle aged brain functions. There seems to be lots of good news here! I guess it would make sense to know how your brain is supposed to work before making comclusions about how your brain is actually working. Has anyone read this book and what do you think of it? Personally, I will be purchasing a copy. Here are the links for the interview and and book:




Tuesday, April 27, 2010

Mobile Calendar

Janet writes: I think Tim and I would be lost without his cell phone. He has made it a habit to enter every appointment, meeting and event into his cell phone calendar. Whenever we need to check a date or a time, he just pulls it out, opens the function, and the information is there. He doesn’t have to try to remember everything we have going on, and neither do I! How convenient!



Tim doesn’t have an iPhone or a Blackberry. He has a Samsung flip phone that is somewhat better than your basic freebee, but doesn’t require the add-on PDA plans or extra fees for apps. The calendar was included with the tools already loaded on the phone. You do have to know how to type text using a number pad, but he has managed that well enough for our purposes. He always sets the reminder for every event, so if something is coming up in the next hour, we know it.


There are a couple of disadvantages to this system. The main problem is trying to schedule something when Tim is talking on the phone and can’t look at the calendar! Well, they do still manufacture paper and pens, so he just writes it down and checks when he hangs up. There is also the issue of forgetting the phone at home. That can happen with any planning device and Tim doesn’t forget often, but when he does, it’s back to the paper method. Thank God for sticky notes!

Wednesday, April 21, 2010

Mental Effects of MS

Here is a short, comprehensive article on the psychological and cognitive effects of MS and how these effects affect relationships with family and friends. The points in this article help clarify why some problems occur and may help you direct your efforts when working with your family or your physician to determine why some problems occur.


Or, if you are fully aware of the mental effects of MS and just want a good laugh, check out the jokes on this website: