Here's a website we stumbled across that has some very easy to understand instructions for using Skype. It also has articles about cellphones, Nintendo Wii, and webcams. While this is a site from the UK is designed for grandparents, anyone who has difficulty understanding technology will appreciate this article page.
While everyone thinks that people with disabilities should just be able to "use technology" to compensate for their difficulties, we have found that cognitive issues will interfere with your ability to learn how to use technology. If it wasn't in your brain before, it's more difficult to get it in there now. We very much appreciate sites like this one that make instructions easy to understand and learn.
Janet writes: Tim and I both have to go through some extra effort to remember everything we have to do in a day. We are busy people, have family members sharing vehicles, and we just can’t keep track of everything that’s going on. Add Tim’s MS into the mix and some of our days are scheduling disasters. When we found out how Tim’s cognitive issues were impacting his memory, we started searching for easy ways to adapt, and one of the easiest ways is email.
When Tim needs to remember something important that is happening later in the day, he writes it on our dry erase board and our calendar, enters it into his cell phone calendar, and then, if it’s really important, emails it to himself. He will either send a message from his phone to his email or ask me to send him an email reminder. This might seem like a lot of extra effort, but when an event Tim has to remember flies out of his memory in the time it takes to walk from the living room to the kitchen, all these steps are really important. If Tim walks past our calendar, he remembers what he has to do. If he checks his cell phone, he remembers what to do. If he checks his email, he remembers again what he has to do. After three or four repetitions with all these reminders, that event seeps into Tim’s memory and he is able to remember it without the reminders. These techniques act as the rehearsal of information that most people do in their heads when they want to remember something. Repetition, repetition, repetition.
I have my own memory problems, due to a loaded schedule and some hereditary scatterbrainedness (is that a word?) [Yup My Lovely Wife :) Tim writes lol], so I have begun to email myself as well. I find this technique very useful when I’m at home and need to remember something I have to do at work, or vice versa. I just send emails between my home and work accounts. When I open my email, I have that “oh yeah” moment when I receive the reminder. It’s a great supplement to the wall calendar and all my “sticky notes to self” on my desk.
Try some of these techniques if you are having difficulty using one reminder method. And please ignore any smart comments Tim has about my being a scatterbrain!
Janet writes: There is an excellent thread posted on the MS World message boards about how to adjust to MS in a new relationship. The original poster asked for advice regarding his recent marriage and his wife’s new diagnosis of MS. Many people in long term relationships who have dealt with MS for years responded and actually help the gentleman talk his way through the ups and downs of his situation – an online counseling session, really!
Reading this thread made me realize how important it is to be up front with each other when a diagnosis of MS comes into your relationship. Most of the people who posted replies to this post have solid, long term relationships. Some knew about the MS before committing to the relationship. Most take their marriage vows seriously – “in sickness and in health” – and whatever comes with it. I read so many threads on these message boards that talk about spouses and significant others not being able to deal with the disease and bailing on their marriages or relationships, so this thread was really refreshing to read.
Tim told me about his MS on our first date. He didn’t want to get into a relationship with me, only to have me walk away once I heard the words “multiple sclerosis”. He was relieved to find out that I already knew about MS and what its potential effects were. That being said, I did have to seriously consider what I was getting into for about a month before I committed my heart to Tim. I have my own health problems and I wasn’t sure if I was up for what could lay in our futures. I did finally come to the conclusion, however, that the man was more important than the disease. We have now been married a little over two years.
We don’t have it easy. Tim went through a change in doctors and several trials of medications before stabilizing on Tysabri. My health is fragile and that is affecting my ability to work right now, so money is tight. Add three college age children and a new grandson into the mix and we pretty much live in chaos. What keeps us going is our faith in God and our love and respect for each other. With those two things, plus open, honest communication between the two of us, we find that we can deal with a lot of things that neither one of us could deal with alone.
So if you are experiencing difficulty in your relationship due to the wonderful world of MS, please seek out your local MS support group. You are likely to find couples there who know how to face this disease head on and are able to keep their relationships solid through it all. If your problems are heading you to a break-up, please find some counseling help as well. Your relationship is worth it!
To read the thread I did, log in to MS World, go to the Relationships and Carepartnering message board, and click on the thread titled Recently married – wife diagnosed with MS – future? For marriage and relationship advice that will make you bust a gut laughing, go to Laugh Your Way to a Better Marriage.
Here is an audio webcast from Everyday Health of a panel discussion on MS and family relationships. This discussion goes into a lot of detail about how children and parents deal with the disease and is quite thorough. It is about 50 minutes long, so plan a chunk of time to listen.
Janet writes: Tim’s daughter has been spending her winter break from college completing word search puzzles. Tim has just been playing “word search” – searching for the right word to say. Repeatedly over the past week, Tim has substituted words for the ones he wanted, confusing all of us listening to him. He doesn’t speak jumbled sentences or gibberish, but just substitutes a single word, usually the name of something, at a crucial point in a conversation. The latest was this morning, when he came back from the hardware store with a couple of new “magazines” to hang on the wall. After I replied “What are you talking about?” he corrected himself and said “I mean calendars”. Since all of us in the house know that he does this we all stop and ask what he means, and he is able to correct what he has said before it becomes an issue.
We have had quite a bit of stress in our household recently and Tim has been feeling the effects of this stress. While he has complained of headaches and fatigue, the most noticeable effect of this stress is Tim’s increased word finding problems. Stress can magnify all cognitive symptoms, including short term memory loss, word finding difficulties, problems solving and decision making skills, as well as others. Remove the stress and the symptoms improve. This is why all those doctors preach “reduce your stress” to MS patients. Here’s what the National MS Society has to say about reducing stress.
Tim, of course, will deny having word finding problems if you ask him. He says that he has his personal dictionary and spell checker right over there. Of course, he is pointing at me. Hmmm. I don’t really think he want me putting words in his mouth………
Tim writes: It is so frustrating when support partners interrupt you and think they know what you’re going to say. They think they can read your mind, but they have no idea what you’re thinking or feeling. They don’t want to listen to you because they think they know what you are going to say. This is BS. I just shut down and stop talking. I feel like a dummy. I’m not, please just listen. You may learn something.
We need time and patience. It’s hard enough sometimes to keep things straight. If you don’t have the time, don’t waste our time. We have better things to do than to feel like crap.
Here is an easy to read article from The Invisible Disabilities Advocate about the invisible symptoms of MS. We deal with this issue all the time, since Tim's MS symptoms are hard to spot when you first meet him. If you are new to MS or are having difficulty explaining your invisible symptoms to your family and friends, this article may give you some help.
Tim writes: I started using Dragon Naturally Speaking today. My first voice training session went something like this:
First I spoke into the microphone to turn the program on.
“Microphone on.”
The program turned on. The little microphone turns green. I played with the on/off function by speaking the off command.
“Microphone off.”
The program turned off. The little microphone turns red. I turned it on again.
“Microphone on.”
I wanted to test if the program picked up my voice properly, so when the microphone was on, I said:
“Today is the day to start something new.”
The program wrote: Today is the day to start something no.
I said “Delete”. It didn’t work.
I said “Back up” The program wrote: backup.
I said “Delete line”. I said this twice and the line disappeared. I tried again.
“Today is the day to start something new.” The program wrote: Today is the day to start something no.
Grrrrowl! It did the same thing! I said “This program is a pain in the A#S.”
The program wrote: program was a pain AMASS.
I tried again. I said a few more things that the program wrote as gibberish. Then I said:
“Janet is the love of my life. She brightens my heart every day.”
The program wrote: Janet is the love of my life. She prisons my heart every day.
Wait! I didn’t say that!
This is pretty much how my session went. Whatever I said, the program wrote something different. Janet was laughing hysterically behind me and the kids wondered what the heck was going on. I did get the program to write the following lines correctly:
My children call me Dick.
I think you work for our government doing healthcare bills.
I am a brain scientist.
I will be using the accuracy tool as soon as our house quiets down enough to let me. (That might be the year 2015.) To end this little narrative of Dragon Naturally Speaking, Session One, I shall share this program’s version of the alphabet:
ABCDEFGHIJKL on the net and all PRSTUVWXYZ.
This is a great website sponsored by the Multiple Sclerosis Trust and Royal Holloway, University of London. Both organizations are based in the UK and have produced a comprehensive, easy to follow website about cognitive issues in multiple sclerosis. People who have cognitive problems and their support partners should take a look at this website and the videos featuring Jeff Gingold. There is a lot of really helpful information here!
