Questions

Janet writes: When we search for interesting material to link to on this blog, we sometimes come across things that cause more questions than answers. I saw one article that recommended physical therapy for your cognitive problems? Well, I suppose, if you go to the PT who does it all, but most of the time you would see an occupational therapist (OT) or a speech and language pathologist (SLP) for cognitive issues. I have included links here if you don’t know the differences between the therapies, since I get this question all the time. (I am an OT.) Go to these sites and look for the links that say information for consumers.



Here’s another question. I read a brief article on Web MD entitled Multiple Sclerosis: MS Related Thinking Problems. This article states that two of the early signs of cognitive problems in MS are difficulty finding words and trouble remembering tasks, which is true. It also states that a person’s doctor will make sure that these problems aren’t caused by something other than MS, like normal aging, medication, or depression. My question is, considering that depression is also a symptom of MS and most people with MS take a cabinet full of medications, how do you separate these symptoms from the MS symptoms? Our experience with Tim’s cognitive issues was that it took about a year and much tweaking of anti-depressants before we really could tell what symptoms were caused by depression and what was truly cognitive. It just wasn’t an easy process. The description of cognitive function on the National Multiple Sclerosis Society website goes a little more in depth on the standard description – I think most other websites get it from here.


Which leads me to a third question. When I read all these articles on cognitive symptoms and MS, they all state that about 50% of people with MS have cognitive symptoms. (Please say this with a stuffy, authoritative voice.) This statistic comes from neuropsychological studies, but my question is how many people with MS actually go through neuropsychological testing? A thorough neuropsychological test will reveal cognitive limitations, even mild ones. A thorough neuropsychological test also takes a 4 to 8 hour session with a series of health professionals (after which you are so tired that you can’t even remember your own name) and costs four figures in the US (good-bye savings account!). I think the key word in that statement is about.


Well, here’s one last question. When is Tim going to write something again? That’s a very good question! Tim does not like to write because he is a terrible speller and types slowly. Just before Christmas we purchased a copy of Dragon Naturally Speaking for him to try. As soon as he masters using this program, he will try it out with another blog entry. Stay tuned…

I'm Not Going To Remember All Those Little Buttons!

Janet writes: For quite a while now, Tim and I have had an issue with exercise. We want to be able to exercise together, but we exercise at different levels of intensity and in different styles. Tim has more time to exercise, but has to watch his body temperature and endurance levels. I can usually tolerate a higher intensity level when I exercise, but I don’t have as much time. To complicate matters, I am now having health problems myself which are limiting my ability to exercise.



Anyway, our solution to this exercise dilemma was to get ourselves a Wii. You’ve seen all the articles about how people who haven’t been able to exercise for a gazillion years are suddenly leaping out of their wheelchairs to play in Wii bowling tournaments sponsored by benevolent rehab centers? Well, this is not us, but we did try out my daughter’s Wii Fit once and liked it, so she helped us buy ourselves one for Christmas. Now, then, comes the process of setting it up.


When you have cognitive issues, it is not really the day to day operations of familiar electronics that cause you problems. No, it’s setting up and learning how to operate new gadgets that creates panic. Tim opened the box and immediately said “I’m not going to remember all those little buttons!” That is what instruction manuals are for.


What? Read instruction manuals? Yes, Tim reads instruction manuals, and then he gives them to me to read to him while he sets up the electronic gadget. Once he is done with this process, he usually remembers how the device operates and can reset it again if he needs to. If he can’t remember how, he can at least remember where the instruction manual is so he can look it up.


Uh, that would be in the filing cabinet in the instruction manual drawer…right?


Actually, we have learned to keep instruction manuals, warranty cards, and spare parts together in the plastic bag they came in. These bags do go in a special drawer in our filing cabinet, so we know right where to look when we need them. We saw this on TV the other day and they took it a step further by placing everything in zip lock bags and labeling it with black permanent marker.


That would make things easier to find. I’ll have to make a note to upgrade our instruction manual drawer. I’ll get right on that, just as soon as I’m done reading about all these little buttons…..

Tim's Rant

Janet writes: At our local MS support group this evening, the discussion once again turned to cognitive issues and how family members just do not understand the cognitive problems a person with MS might be experiencing. We were discussing this topic in the car on the way home and Tim became rather worked up about the subject. So, here is Tim’s Rant:



I have MS. I am not stupid.
Don’t talk loud to me. I am not deaf.
You might need to talk slowly.
Writing it down is even better.


What Tim is saying here is, treat people who have cognitive issues with respect. Don’t talk down to them or treat them like children. Instead, help them adapt so they can function. They are people, after all.

Get A Word In

Janet writes:


I keep cutting Tim off when he’s talking to me and he’s getting mad at me. He starts telling me something and the second I think I know what he is talking about, I will respond. This really doesn’t have anything to do with MS or cognitive issues. It actually has everything to do with the fact that we are married and I just think that I know what he is going to say. Of course, I don’t always know this, so I end up cutting him off and he gets mad. I should know better.


This brings up a very good point for all of you support people right before the holidays. Don’t let your loved ones with cognitive issues get shut out of family conversations. If you see your loved one having difficulty getting a word in, direct the conversation toward them and make sure he or she has adequate time to speak. If your loved one is stuck on a word or has just said something that doesn’t make sense, try to help him or her clarify points rather than just putting up with those awkward, puzzled stares from the cousins. Also, if your loved one is totally shut out of the party or is sitting off alone, make sure he or she is included, at least for as long as he/she can tolerate. Remember that cognitive issues can be just as fatiguing as physical problems, so don’t push your loved one’s limits.


Holidays are tiring and stressful, but also fun and a great time to reconnect with family. Make sure your loved one with cognitive issues is fully included in your holiday get-togethers. As for Tim and I, well, we’ll just keep working on that marriage thing….

Now Here's a Brave Support Person!

This video on YouTube shows a husband talking about his wife having MS. Of course, she is the one interviewing him and recording the interview! Now he is one brave man! This video is a good example of some of the issues a couple can encounter when one spouse has MS and how a good relationship will help that couple through the difficult times.

SUSANLOVEALOTBEAR - her husband talks about her having MS:



Here is Susan's YouTube page:

http://www.youtube.com/user/SUSANLOVEALOTBEAR

Surviving Wally World

Janet writes: Ok, it’s Christmas shopping season, and sooner or later we will all have to make that inevitable trip to…Wal-Mart. I cringe at the thought. Oh, I have nothing against Wal-Mart as a store or a business. (We call it Wally World at work.) They usually have what I want and they almost always have the best price around. The employees are friendly or at least civil and I have never had trouble returning merchandise or using the bathroom. No, my beef is…Wal-Mart. Big, bright, giant, overstuffed, Wal-Mart.



The entrance to this store is misleading. You think you are ok. The carts are right there – scooters too – and a friendly person greets you. “Welcome to Wal-Mart”. Then you walk past the specials display and into the glare. No one can say this store isn’t well lit. The lights are incredibly bright and they reflect off the highly polished white floor. The isles of things are usually filled with extra isles of things and cross isles of things and special displays of more things and pretty soon you are surrounded by so many things that you forgot what things you were looking for in the first place!


All the “things” are actually manageable – if you go at midnight. Most of us go during normal business hours, however, so to the lights and isles and things you must add people. Many, many people. People going fast, people going slow, people standing still, people stopping abruptly right in front of you, and people standing right in front of the “thing” that you came for and not moving! Try not to scream, now! That’s very rude.


Anyone with cognitive issues knows that about five minutes of this is all it takes to give you one whopping headache. In fact, five minutes of this is enough to give anybody a whopping headache, with or without cognitive issues.


I have vertigo of unknown origin (they call it a migraine disorder), and between that and Tim’s MS, we make quite the pair in Wal-Mart. I spend at least ten minutes, sometimes more, wandering around trying to orient myself while I read signs and attempt to locate the “things” we came for, and Tim just follows with the cart because he doesn’t want to attempt to deal with it. After wasting a sizable amount of time, one of us usually figures out where we need to go and we get to the correct location in the store. It’s exhausting and frustrating. Yes, we do save money. It helps us pay for all the Advil we take after we get home.


I actually do enjoy shopping at Wal-Mart. Wal-Mart.com, that is.

Cell Phone Reminders

Janet writes: We are not the highest tech people around. For example, we didn’t opt for the free phones with our cell phone plan, but we paid under $30 each. Needless to say, we don’t have lots of fancy “apps” we can use when we don’t feel like using a phone for talking. (Wait! Isn’t that what it’s for? Oh, never mind.) We have, however, figured out some simple ways to use our cell phones as memory aids, using the tools and functions that we pay for with our plan.


Of course, both of our phones have built in calendar functions, found within the Tool menus. Tim enters everything he has to do in his and sets the alarm with certain ring tones to remind him anywhere from 30 minutes to a couple of hours before each item. He even has the alarm set to match the ring tone of the person that the appointment or event corresponds to. For example, if he has to pick me up from work, he will set the alarm to ring 15 minutes ahead of time and he’ll hear Kiss The Girl, which is my ring tone. If he has to take his daughter to a doctor’s appointment, he’ll hear We Are Family an hour before the appointment time.


We use text messages quite a bit to remind each other about things we need to do as well. We will text reminders to each other throughout the day. We both find these easier to retrieve than voice mail, and the written text is easy to refer back to. We also text reminders to our own or each other’s email accounts. We have our email accounts set up in our address books so we can send texts at any time. A text from a cell phone looks like this as an email message (phone number is blocked out):



[SMS Message from a Cellcom subscriber]


From: ********** [**********@cellcom.quiktxt.com]


To: pinnut@netnet.net


Cc:


Subject: [SMS Message from a Cellcom subscriber]




Meeting at school 7:40 Friday



We have camera phones, so we can add pictures to these text messages if we want to. In my phone, I take the picture, and then follow the proper function series to add text and send to the email address I want. It comes through looking like this:



New Multimedia Message


From: 9206806316 [9206806316@pics.cellcom.com]


To: pinnut@netnet.net


Cc:


Subject: New Multimedia Message

________________________________________

Message:


Feed the dog at noon



Tim has a video function on his camera, so he can film video clips and email those. Sorry, I am not high tech enough to figure out how to clip the link into this blog to show you the sample video! (I think we need an upgraded version of Quicktime.)


These little reminders do not require an iPhone or a Blackberry or another fancy gadget. If you have multimedia functions or even just text messaging on your phone, you can use these easy techniques. Of course, if you are still using the phone with the cord attached to the wall, then you might want to just write a note…