Friday, February 25, 2011

Wii Play

It's been 389 days. My game tells me that. It has kept track of how long it's been in our humble abode. It also has a calendar that shows me the days I used it to play or what I call exercise.
One of the games we have and I currently use most is called Wii Fit Pluse. It is a combination of games and exercises. Their is a lot to do but, for the most part I just do the same routine over and over. The game holds my setting and is just a click away.
One of the other screens tells me that if I were a dog I would be "a very faithful golden retriever" because I stick to the same routine. G uses it for a multitude of other things. It keeps us from being couch potatoes.
The routine I use is for strengthening exercises. I try to do these 9 exercises at least 5 times a week. If I don't get the opportunity to do them using the wii I do them without it. They are not exercises exclusive to the program. It usually takes 13 to 15 minutes for me to get through them. They involve balance and core strength.
When we first purchased the console I was exercising to another program. It worked well for me also. Lately however, I've been more concerned with my balance issues.
I realize that the problem is just in my head. ( I love saying that;-)) Better put though. I realize the balance and the other symptoms I have originate in my brain. These are the nerves that the ms has decided to demyelinate. So the signals aren't making the journey as well as they should so I have the balance troubles.
I've read scores of things advocating exercise to keep my muscles toned and strong. It won't heal the myelin sheath that covers the nerves it will just, hopefully, make me able to move smoother. 
So, lately, I've been also using these exercises for a gauge. When I first start up the system I get a chance to  do a Body Test that weighs me. Then I have a chance to perform something called Measuring Body Control. The program gives you a couple test to see how contected your body actions are to your mind. Things like staying centered on the balance board and then clicking on numbers that appear on the screen using the wii remote. You have to click on the numbers in assending order just using you peripheal vision. This is a timed activity. You have to complete this in 30 seconds.
Another test is called the Walking Test. On the wii balance board you take 20 steps at your own pace and it registers on the console. After the  20 steps you'll see a read out that shows you  how balanced you gate is. There are several others.
Each time you use this part of the program you get two random tests to perform. After you perform them the game lets you know how you did by showing you your wii age. Some times this is great. If  you've done well it shows you a young age. The other day I was 40. I you do poorly. It will show you an older age. Yesterday I was 60.
This has been helpful to me. It shows me my condition for the day or for the moment. It exercises my brain.
After this I move onto the strengthening exercises. They are balance intensive. Some of them I have to use my walking stick to help me keep steady enough to  perform them. Other days I can do most of them without it. This has been a very helpful gauge.
I was reading in a book the other day about a women with ms. She uses a crossword puzzle as her gauge. She tries to work one daily. This helps her to see how she is doing. I am sure there are a multitude of others that have devised other daily activities to help them see how they are doing.
I know it may sound silly, to some, to say that I feel that the Lord has lead me in this direction. But, I do. How can a wii be an instrument of God?  The same way He uses other things to help His children where ever they may be. He does direct our paths to our benefit because He loves us.

Tuesday, February 22, 2011

Old Dog New Tricks. New Dog Old Tricks.

Most of my life I have had the convenience of being able to think on my feet. I have been able to race around without missing a beat. I was chief at multi-tasking. In fact I was doing this way before that term came into popular use. I use to pride myself on being able to get up in the morning and out the door in minutes. Showered, dressed, properly coiffured, and items needed for the day in hand.
After becoming a mom, I was pleased that I could do close to the same with two little boys.
In walks MS.
Boy has life changed. Please understand. I am doing fine. My brain is just under new management, so to speak. I could no more hurry out the door than fly to the moon. In fact. Flying to the moon really does sound easier to me. They have that down to a science. I'm still struggling with the list making.
In fact the moon launches have sort of become a guide line. They don't make it very far with out check lists. Keeping all the ducks in a row. Finishing one  task at a time so they can move on to the next. Building a foundation of proper planning.
And that's the old/new trick I am trying to learn. Making lists. I am learning that to keep me on track, on task, I need to have a check list. Actually several different lists.
I keep a running grocery list, a household activity list, a G list (this one has been on going for 18 years. It's things my son needs throughout the day) and a obligation calendar. If a thought doesn't make it to a list, it doesn't make it to conclusion.
So I'm trying to learn this and also how to use the lists for my benefit.
The Grocery List.
I keep this list on the refrigerator. It's not only a list of things I have run out of, it's a running low list too. The second I think of an item I put it on the list. Hopefully this action doesn't derail the thing I was doing when I remember I needed the item.
I try not to run out of the items we use most. I keep a household par. One in use. One in back up. That way we are stocked to the par and hopefully don't run out when we have a situation. This is also beneficail when I'm in the grocery store.
When shopping I have made it a recent habit of entering the store and going to the right. Then following the rows to the stores conclusion before checking out. I watch my list and only buy the items on it. If I am looking for one of the items and it escapes me. I let it go. I have decided not to stand in one spot looking for an item. If it isn't easily acquired it can wait until next time. The par gives me this luxury. If I am bingo for that item then I ask some one to help. Usually this is my son and it delights him to be my champion. As the shopping progresses I tear a notch in the list next to each item I've placed in the cart. The visual aid is very helpful.
We check out and get things loaded in the car. I keep a cooler in the car for the stuff that needs to be kept cold. We always try to double up on errands so if the grocerys stay in the car during the other obligations a cooler is essencial. Especial during the warmer months. However, coolers also will help insulate items against freezing temperatures too. This habit allows us to stay in town hours longer if needed.
When we do make it home we set up a relay systom. G goes and unlocks the door and then meets me half way. I take the first bags out of the car and hand them to him. Before he takes them from me I say "Comanche",  "Chinook" or even  "Sky Crane". That let's him know how heavy each is so he can set himself. He receives them  and then flys them to the kitchen. I go back to the car to get more bags and he returns half way to receive them. We keep this up until all is in.
In the kitchen I try to put the items in the same location as the par. Some times this works out. Some times it doesn't. We live in a small home and cupboard space comes at a premium.
Which lead me to my next challenge. Setting the house in order. This will take some time. I'm a pack rat. We
have lived in the same place for 35 years. You get the picture. So over the next few months I will be trying to get that job accomplished. Hopefully I will be able to work up a procedure for that.
I realise that all this may seem remedial to some. The fact is these are old tricks. And that is fine. They are pretty new tricks for me. I've been a take it as it comes sort of gal. But now, if it doesn't get written down and set in action, it simply slips away. Some things can do that and not have bad consequences. Other things can't. Those are the things I'm concerned with. The things within my realm of control. The rest I choose to lay at the feet of my Lord. He's my Champion too.

Thursday, February 10, 2011

Tracking Symptoms

I have to admit tracking symptoms makes me feel in control of something.  Even if it is just the tracking of them, it still makes me feel better.
For the past year plus 2 months I have been writing down everything I feel. As I have mentioned numerous times, a year ago December I started having trouble. I had no idea what was up but, being who I am I started writing down the troubles I was having. Over this past year the entries waxed and waned. By the time I had my first neurologist appointment I realized this back log in my little book would be ridiculous to show a doctor. So I typed out all the symptoms on my computer, made a print out and presented it to him upon arrival. He thanked me and looked down the list.
I am not 100 % sure this helped or not. Even though it did show SIT (Separation In Time). The diagnosis was already in the bag. My MRI and double vision were conclusive.
Since then I have continued logging every symptom. At the start of this year I set aside my maxed out little logbook and cracked open a new one to start tracking this year.
Since the last visit with my neurologist I have acquired quite the back log. I have been thinking it's about time to get prepared for my next visit by typing them all on my computer again. You would think that I would have reasoned this out before now. But I haven't. I should have been keeping up with my symptoms on my computer and left out the little book writing. Now I get it. This would be smart. Though pen and paper have always been dear to me.  ;-) It is time for a change.
Well, that is what I am trying to do now. This won't erase the little books back log. I am still going to have to get those typed out at some point. But, from this date forward it will be electronic.
In walks Grace and genius.
I was getting ready to type out the symptom list. I had my little books and my computer ready to get started. Then I ran across a bit of software online. I couldn't believe my eyes. Some genius had made just what I needed. Back in 2008 this man made a MS Tracking software. In 2011 I ran across the link and purchased a copy for a modest price.
I am delighted. I have been using it for only a few days so I am not solid on it yet. Still learning. But what I have so far is priceless to me.
When I first got the software, I was thinking I was only going to be logging from this point forward but, I am discovering the ability to post date some entries and therefore clean up my back log with this software too. After logging I'll be able to print out my symptoms. Talk about convenience. Have I said I'm delighted.
To find the software I simply typed in MS Symptom Tracker into  Google search and it popped up. 
I have also started to use a online food tracking  program. I had been logging my food and water intake in a log book for the same amount of time as my symptoms. Going electronic here seemed prudent too.
With this program you can choose to use the free service online or download the software to your computer. For an added cost you can link the downloaded software to the online service. So far I am pleased. It really seems to be a full featured software. Still learning it but so far so good.
It's been keeping me busy logging and back logging with both of these "new to me" systems. Hoping and Praying it will be time well spent.  I defer to the One Who is really in control of my life. I'll trust for now this is His leading to help me along the way.

Sunday, February 6, 2011

Good Days. Bad Moments.

We can all relate to this. Life is just that. We hear people say it all the time "this is a good day" or "oh, that was a bad day". Days are not respecters of persons. It really doesn't matter if you have ms, some other disease, or are healthy. We all have good and bad days.
Yesterday was a good day. However, Yesterday also had a really bad moment.
It was what we call a Home Day. We stayed home and just puttered around. Some things got cleaned. Some music got played. No stress. No fuss. The sun even made an appearance. The temperature resembled spring. In February that is a Good Day.
And we almost made it through the whole day without too much trouble. As far as my ms symptoms it was a Status Quo day. But, Since I was doing some house work, some of the symptoms that usually come and go, stayed for most of the day. Towards the end of the day I was having weakness issues and unfortunately I played right into the anger trap.
By the time dinner time rolled around for the dogs I was down to my last few spoons. So to speak. Now the dogs really don't mean to be pushy. They just are. The do have a way of really pushing my buttons. Dinner time rolls around and they want to be fed. No choice. They get feed.
Now it's dinner time for us. So dinner gets started and we get through in good shape. Gregg really is a champ in the kitchen. He also reads me well.
The evening progresses through a good dinner and some TV. The day slides away and I am feeling better. The last stages of the day approach.
Every evening requires the shutting down of the house before we retire. Nothing new for anyone. Nothing new for me. As always, I  lock up, turn outdoor lights on, feed the pets, the fish, the birds, shut down the lights for the African violets, check the pets heater, cover the birds, stop my clocks, and prepare to give G his insulin. Really routine, nothing critical.
Some times I think that is the trouble. We go through  the days on auto pilot really. Things have remained the same for so many years we don't even have to think about them. Just sail through on auto pilot. Well, not any more. Or so I have learned now. I wish I could have learned it sooner. Or maybe I did and forgot.
The second to the last thing I do before retiring is give G his nightly insulin. This night I prepared his first of two shots. I dialed it up and handed it to him. He takes it, gives himself the shot, and hands it back to me. I start to work with the other insulin and stop short. "How much did I just give you?" I couldn't remember. It was just a moment ago. I couldn't remember if I had dialed up the normal evening amount or substituted it with the normal morning amount. I feared the later. "How much did I just give you?" The blank look remained on Gs face.
The trigger was snapped. I lost it. And G sat there like a deer got in my headlights. My tirade consisted of "I need help with this stuff" and "I'm drowning and every hand I reach for slips away" As true I this stuff may be or not. And as real as my feelings may be or not,  really doesn't excuse me on this one. I know I am compromised cognitively. I've known this for some time. I've been working with G with checks and balances because of this. He's compromised too. Though most times he doesn't remember this.
We simply dropped the ball. He didn't need the verbal beating. I know better than to do that to him. He can't take it. I had just taken a Good Day child and kicked his feet out from under him. I just made him feel worthless. He longs to be helpful to me and I made him feel like a burden.
Instead of reaching to my Lord Jesus to save me from drowning I try to pull someone under with me. I realized my mistake when I saw him set his glasses aside. I am so proud of him. At other times of anguish his glasses would have been in pieces. This action makes me realize what I had just done. I apologize immediately and start working to repair my broken son.
I explain that that was my fault. I had forgotten to walk us through the checks and balances. We just need to back off of the next insulin and wait to see what transpires. I tell him how sorry I am and that we will try better to help each other. It really was my fault.
I need to remember this. I need to keep in place all our checks and our balances. I need to remember not to over exert myself during the day. Not to use all my spoons. I need to ask for help before I'm angry. To ask for help before I get too angry.
I sit with him for awhile and we pray together. Evening prayers are the last thing we always do before I retire. To the One that keeps us from drowning. We pray to the One that keeps the waves and swells from over taking us. Thank you Jesus for your forgiveness. Thank you for Your Grace and Mercy. Thank you Jesus there are Good Days. Help me Jesus in the Bad Moments.

Wednesday, February 2, 2011

Life upside down- 5 months in. Step by step.

Again I can exclaim nothing much has changed. I am truly grateful for that. The past month has progressed and we have kept step with it. We have even had some glorious adventures.
Driving has been a highlight. Not a time goes by in a car that I am not grateful. I constantly thank my Lord for the ability to drive or ride. Windshield time is precious to me. I am blessed that my two men feel the same way.
My ms stays the same, mostly. I am experiencing a couple more things but, am approaching  them with a "wait and see" attitude. I am not quite sure if they are ms symptoms or consequences to how I have been dealing with my ms.
There are also a couple of old symptoms that I have learned better to deal with in this passed month so, I am thankful for that. Who would have thought the lowly cranberry would become of so much importance to me.
I continue studying what I can about ms. I continue to log things. I have switched to more electronic logging however. I have found some good software to use to help me do so. For food and exercise I started using an online service. You can use the software online and also download it to a computer. The two can be synchronized.  I am still learning how to work with it. I do like what I see so far. I also found a software for ms symptom tracking. I am still waiting for that to arrive by mail but am looking forward to using it. It will allow me to see daily, weekly, monthly, and yearly comparison read outs.
My dmm therapy continues to go well also. I am quite use to it's effects directly after the injection. I haven't feared bees for along time. These injections feel like a sting and will bring up a red welt. It is short lived. Some days and in some shot areas, they are of little or no effects. I am so grateful for the log book I have from the company. It really helps me keep track of where the next injection site should be. Keeping all that straight with out the logbook would be taxing. It is nice to have a place to write things concerning this down. Remembering it cold would prove impossible. 
I spent this passed month in a state of "Status Quo Days". Though I did do a battle with some kind of flu bug. I was very grateful that it did not exacerbate any of my symptoms or bring about a relapse.
I guess I might as well announce that I cut my hair. I did not change the style. I just lopped off 11 inches and donated it to Locks of Love. I was inspired by a grand niece who had donated her hair a couple weeks before me. I am thankful that this program exists. It is a wonderful caring charity. I thank my Lord I could help in this way. I pray my hair  grows out good and fast because I plan to try and send some more.
So, that is and was the passed month. 5 Months in from my diagnosis. I am doing fine.
January is never a "Ball of Fire" month for us. In the past I would kick against it and call it things like "winter dull drums" or "the horse latitudes". This year it didn't seem so bad. Thank you Jesus for being here every step of the way.