Because of some special circumstances, my oldest son has been able to feel first hand some of the effects I deal with having multiple sclerosis. Not that I wish my symptoms on anyone, but it is easier for him to understand some of my daily struggles. This is my oldest son who wrote the essay about his mom having MS. I would like to see a rewrite of it the same essay now to see if any of his views have changed.
Since it is summer vacation, my son is going to the gym with me early so he can work out. He has even gotten up extra early and opened up the gym with me at 5:00am so I am not alone. His new dedication to his physical condition has paid off and he is even working with a trainer for increased strength and endurance. The trainer and he worked especially hard one day on legs. Then next day my son said how much his legs hurt and how sore he was. He worked out again and could not stop commenting on how much it hurt to move or basically do anything.
While we were running errands later that day he once again commented on his legs and I said, “You are going to be sore from time to time.” He said, “But, Mom you don’t understand, my legs are so heavy.” Well, it did not take me long to tell him that is how I feel every day. I told him the same story I have shared with all of you about how I start off the day feeling normal and it changes as the day goes on. It feels like every hour another ankle weight is added to my legs and by the end of the day, it takes everything I have to walk, much less walk up steps or try to carry anything other than my own body weight. He said he understood a little more how I felt but I hope he will remember that in another few months while he is waiting on me to catch up with him while we are walking somewhere.
The next event was not funny but we take understanding where we can get it. This is an event I do not want to happen to him again, but he is young and I hope he does not feel the effects of this later in life.
Again this is my oldest son who is now almost 6’3” tall. Being that tall, your head is already a good length from the floor and add to that your vertical leap in a basketball game and the impact of falling to the floor after breaking your nose gives you a pretty bad concussion. I was already thinking that the fractured nose would be enough to make me retire from the sport but the concussion is what really put him out of commission for the next 4 weeks.
He experienced some very dramatic personality differences almost immediately. The next day he explained to me that he felt like he was in an “alternate reality”. It was later discussed that he sometimes knows someone is talking to him but he can’t understand if they are really talking to him. It was explained to me that he had cellophane on his head and it took longer for him to process everything and figure out what was being said. He even had some problems, very minor, with his vision. An x-ray and Cat scan later and it was determined that he did fracture his nose and suffer a grade 3 concussion, but there was no threatening swelling at this time. The decision was made that, for some time, he should not participate in any activities that may have physical contact.
On the car ride home I decided it would be a good time to tell him that sometimes when my MS is acting up that I feel like I am in that same “thinking” fog. I hear people, I process what they are saying and I say something back but it is all just a hair slower than normal. I am in the fog and my lights are not working real well. I then told him that now he understands what I face from time to time.
I will say that my timing was not the best. His nose hurt, he had a bad headache and had just been told that he could not be able to play basketball for the next four weeks. While I was pleased that we could use the opportunity to bond on a different level, he was trying to say that this whole new episode in our lives was not about me and my MS. I will give him that one but in a few more weeks when his headaches are gone and he is playing basketball again, I will save this information to bring up again.
As always keep a smile on your face,
Joy
Tuesday, June 23, 2009
Wednesday, May 20, 2009
Exercise, Exercise, Exercise
If you have Multiple Sclerosis , have a family member who has it or just know someone who is fighting MS, Encourage them to Exercise, Stretch and MOVE! We can help our own bodies fight MS if we keep it healthy and strong. Our muscles, and minds, have to be flexible so we will have the ability to adapt our body and movements to the changes we may face on our journey with Multiple Sclerosis.
We are one week away from summer vacation and my youngest has decided to be sick and miss a week of school. My oldest got his learners permit, that requires at least 2 more blogs, and in general, life has kept me on the go at a hectic pace for the last month. I have made bad decisions during this time and have skipped a few workouts but mainly, I have cut short my workouts in a effort to save time. As a result of my impatience, I spent the last week with stiff legs, an aching hip and I have even become dizzy a few times. All of that wonderful time I saved by cutting short my exercise routine, has been spent feeling a little under the weather and struggling to stay mobile. Yes I know that it is my fault and I will learn from this mistake. Along with all the other notes I leave myself on my desk is a new and BIGGER one that says, EXERCISE TO FIGHT MS, COMES FIRST.
If I do not keep my focus on the fact that my fight against MS will help me be stronger for the people I love, then I will be more of a burden to them in the long run. Not only am I waging this battle for myself, but for my family too. Thankfully this problem had an easy solution. I went full force back into my exercise and stretching program this week, even a Saturday at the gym. Within 4 days of concentration on all the moves that helped loosen and energize my body, I am already moving better. I have my schedule set for the next week and will remember how tough it was to walk and move for a few days; don’t want to go there again.
We have added a “Senior Cardio” class at our gym and I am going to go take a class with them this week. They use chairs to help with their balance while standing and perform some exercises while sitting. I am going to try the class and gather more information on programs for people overcoming balance issues. There is also an aerobics demonstration offered at a local physical therapy center that I want to look intoso I can learn about things I can do on my own in the pool this summer.
In an earlier blog I had talked about cognitive functions and struggles to help me stay focused. The puzzles that I do each night seem to really be helping me. It is my bedtime routine now to work on one of my Sudoku puzzles and it is a time that I look forward to each night. I enjoy hearing about other people’s inventive ways to remember things; always send those if you have them.
Opportunities are available if MS survivors will just look for them. Sometimes we need a little push in the right direction to get us going. I have met 3 more people this week with Family members who have Multiple Sclerosis. I constantly encourage them to help their loved ones stay positive and active. It saddens me when I hear about others who are just sitting around waiting to see what happens. Get up and get out; use a cane, use a walker, use a chair, JUST GET OUT and continue living a fulfilling life. Don’t let people sit at home, force us to get out, encourage us to join you for an adventure somewhere even if it is to the grocery store.
As always, fighting to be a THRIVER of MS, not just a survivor.
Joy
We are one week away from summer vacation and my youngest has decided to be sick and miss a week of school. My oldest got his learners permit, that requires at least 2 more blogs, and in general, life has kept me on the go at a hectic pace for the last month. I have made bad decisions during this time and have skipped a few workouts but mainly, I have cut short my workouts in a effort to save time. As a result of my impatience, I spent the last week with stiff legs, an aching hip and I have even become dizzy a few times. All of that wonderful time I saved by cutting short my exercise routine, has been spent feeling a little under the weather and struggling to stay mobile. Yes I know that it is my fault and I will learn from this mistake. Along with all the other notes I leave myself on my desk is a new and BIGGER one that says, EXERCISE TO FIGHT MS, COMES FIRST.
If I do not keep my focus on the fact that my fight against MS will help me be stronger for the people I love, then I will be more of a burden to them in the long run. Not only am I waging this battle for myself, but for my family too. Thankfully this problem had an easy solution. I went full force back into my exercise and stretching program this week, even a Saturday at the gym. Within 4 days of concentration on all the moves that helped loosen and energize my body, I am already moving better. I have my schedule set for the next week and will remember how tough it was to walk and move for a few days; don’t want to go there again.
We have added a “Senior Cardio” class at our gym and I am going to go take a class with them this week. They use chairs to help with their balance while standing and perform some exercises while sitting. I am going to try the class and gather more information on programs for people overcoming balance issues. There is also an aerobics demonstration offered at a local physical therapy center that I want to look intoso I can learn about things I can do on my own in the pool this summer.
In an earlier blog I had talked about cognitive functions and struggles to help me stay focused. The puzzles that I do each night seem to really be helping me. It is my bedtime routine now to work on one of my Sudoku puzzles and it is a time that I look forward to each night. I enjoy hearing about other people’s inventive ways to remember things; always send those if you have them.
Opportunities are available if MS survivors will just look for them. Sometimes we need a little push in the right direction to get us going. I have met 3 more people this week with Family members who have Multiple Sclerosis. I constantly encourage them to help their loved ones stay positive and active. It saddens me when I hear about others who are just sitting around waiting to see what happens. Get up and get out; use a cane, use a walker, use a chair, JUST GET OUT and continue living a fulfilling life. Don’t let people sit at home, force us to get out, encourage us to join you for an adventure somewhere even if it is to the grocery store.
As always, fighting to be a THRIVER of MS, not just a survivor.
Joy
Friday, April 24, 2009
From a 14 Year Old's Point of View.
My oldest son came home from school on Wednesday afternoon with note from school. He won "Honorable Mention" in our local Rotary Club's essay contest. The topic was "Laws of Life". I asked him if I could read his paper and he said he did not have it and then I asked what he wrote about and he told me it was about me and my MS. He brought the paper home today and it is below.
It was around late October last year when my mother found out she had Multiple Sclerosis. It impacted my life greatly. First finding out, I had no clue about the seriousness of the symptoms. It made me quit worrying about the things I don't have and appreciate the things I already have. Upon finding this out I realized I just needed to stop and smell the roses.
This disease has many symptoms that affect her day-to-day life style. One symptom that affects her is poor balance. She always has a difficult time walking. I used to always think she just walked in a weird way but the MS causes her to walk in a different way. It also makes her dizzy and she often stumbles over the smallest of things. Another symptom is weakness. She is very clumsy and she has a tendency to drop things. When my mother walks, she often drags her leg, she cannot control it when she does this. One of the last main symptoms that affects her is her memory. She has a difficult time remembering things and usually needs to hear something more than once. She also senses that she is thinking in a fog.
Ever sense my mother was diagnosed with Multiple Sclerosis, I have tried my best to help her in every way I can. I usually let her hold on to me when we are walking into the store or up some stairs so she doesn't lose her balance and fall. My mom recently started using a cane to get around because she does not want to embarrass me by holding on to my arm. She can be so stubborn some times but I still love her.
Now more than ever, if I tell my mom something I need to write it down for her or tell her two or three times to make sure she doesn't forget. This gets very aggravating for me but I just have to remind myself of the symptoms she has. It seems like every time we go somewhere in public someone just has to stare at her. She is perfectly fine and has nothing wrong. So what if she drags her leg or sometimes forgets things, normal people forget things and drag their legs also. They act like they have never seen it before.
Although my mom may drag her leg and forget some or most of the things I tell her unless I write it down, I still love her no matter what. She is no different to me now than she was before she was diagnosed with Multiple Sclerosis. This has impacted my life in a tremendous way. Either way mom is still mom and people need to realize what they have and just take time to Stop and Smell the Roses.
1/22/09 Stop and Smell the Roses
It was around late October last year when my mother found out she had Multiple Sclerosis. It impacted my life greatly. First finding out, I had no clue about the seriousness of the symptoms. It made me quit worrying about the things I don't have and appreciate the things I already have. Upon finding this out I realized I just needed to stop and smell the roses.
This disease has many symptoms that affect her day-to-day life style. One symptom that affects her is poor balance. She always has a difficult time walking. I used to always think she just walked in a weird way but the MS causes her to walk in a different way. It also makes her dizzy and she often stumbles over the smallest of things. Another symptom is weakness. She is very clumsy and she has a tendency to drop things. When my mother walks, she often drags her leg, she cannot control it when she does this. One of the last main symptoms that affects her is her memory. She has a difficult time remembering things and usually needs to hear something more than once. She also senses that she is thinking in a fog.
Ever sense my mother was diagnosed with Multiple Sclerosis, I have tried my best to help her in every way I can. I usually let her hold on to me when we are walking into the store or up some stairs so she doesn't lose her balance and fall. My mom recently started using a cane to get around because she does not want to embarrass me by holding on to my arm. She can be so stubborn some times but I still love her.
Now more than ever, if I tell my mom something I need to write it down for her or tell her two or three times to make sure she doesn't forget. This gets very aggravating for me but I just have to remind myself of the symptoms she has. It seems like every time we go somewhere in public someone just has to stare at her. She is perfectly fine and has nothing wrong. So what if she drags her leg or sometimes forgets things, normal people forget things and drag their legs also. They act like they have never seen it before.
Although my mom may drag her leg and forget some or most of the things I tell her unless I write it down, I still love her no matter what. She is no different to me now than she was before she was diagnosed with Multiple Sclerosis. This has impacted my life in a tremendous way. Either way mom is still mom and people need to realize what they have and just take time to Stop and Smell the Roses.
Monday, April 6, 2009
Pity Party:
I was in the car by myself and had a pity party. The guest list included, Me, Myself and I, and we were all in rare form. I was happy that Senators Owens and Powell from South Carolina were not there to witness my party. These two crusty old men would have taken me outback to the woodshed for a much needed Attitude Adjustment. I had no one to blame but myself and no one could fix it but me. You all know me, I will start at the beginning and take the long way around talking to get you back to this place. Just know that during this most recent adventure, I passed many different levels of emotions that ended in shame.
I was going out of town this past weekend to help my better half pack up and empty a space that we have recently rented out to others. I thought I was doing so much better with my memory/cognitive skills that maybe I was getting a little lazy about it. While packing up the car for the drive to meet him, I remembered that I was not supposed to bring the coffee table we had sitting in the garage. I very strategically took some meat out of two different freezers and packed it in one cooler to take with me. When I spoke with my husband that morning, I was proud to tell him that I had remembered the meat and it was in a cooler beside the car so I would not forget it. He told me that he had already told me once that we were not going to grill the meet and he needed me to leave it at home. I clearly did not remember that conversation but shrugged it off, no harm done.
During the next two days of packing various items I had to constantly ask him the same question more than once on different topics. I tried to tell myself that I was confused because we were talking about twin beds and full beds and doing one thing with the twin and something different with the full. It sounded like a good excuse to me but by the second day I was getting frustrated at myself for having to constantly ask him to repeat himself to me. In my mind, I was thinking about how way back when I was in kindergarten the teachers would use a straight pin to attach a note to your shirt so your mom would get it when you got home from school. Maybe I need to pin notes to myself so I would not forget.
Here is the event that put me over the edge on my path to self pity for a humiliating 2 hour ride home. After we went to a lunch where my youngest son held my phone, I realized after he left with his grandmother, I had neglected to ask for my phone back. My husband called and said they were not too far up the road, and I said I would meet them at Wal-Mart . I took off to sit in the parking lot at Wal-Mart to wait for the phone and a second chance to force my youngest to hug me yet again. After waiting for 45 minutes, I decided that something was wrong with the plan and I should call. Guess what……………..there are not many pay phones these days and more important, the ones that are available do not work but take the coins from your fingertips.
I started driving towards home, and after 3 more stops, was unuccessfull finding a payphone. My fourth stop at a grocery store led me to a young girl who handed me her cell phone and I called my husband. He asked where I was. After I told him I waited for 45 minutes and they never showed up, he told me that he had my phone. They had come back to our condo to bring the phone and he thought I was going downstairs. He had told me before I left that they were still close by and coming back but I had it fixed in my head to go meet them at Wal-Mart. A major misunderstanding on MY part.
I thanked the sweet girl at the grocery store and went out to my car and started crying. I was wondering if I was losing my mind. I was worried that next time I might forget or misunderstand something that would cause someone pain or even hurt them physically. I was imagining that I might forget and leave one of my children somewhere or not remember who I was. This was all during the self-pity phase when I was thinking to myself that these memory lapses could get bad, very bad if I let them. Where would I be in five years at this rate?
Paranoia hit next. Where was everyone in my family? Was I supposed to be anywhere soon to meet someone? What else had I forgotten? I thought back and I could remember my childhood and college years and most things that I am sure I was supposed to retain from the first 43 years of my life. Short term memory seemed to be my BIG problem. Panic hit a little on top of paranoia to make a nice little cocktail of anxiety surge through my chest. Now I was not only losing my mind, but hyperventilating on top of that. Would I even remember whom I would need to call, or their number, if I had to pull over. Now back to one of the original problems, I DON’T HAVE A PHONE WITH ME. I needed to just get home, would I remember the way.
After I passed the half way mark, I started to calm down a little bit and started making notes on the pad of paper I carry in the car. The list included things I needed to do when I got home, things to remember for the upcoming week, research to do on memory vitamins and various pages of other “stuff”. My handwriting has never been very graceful or elegant and since the MS has started affecting my right hand, it has increasingly become worse. Trying to read a pad of paper written in a car while driving with a combination of messy writing and a wet marks is difficult sometimes. The therapeutic task of writing did its trick and started to calm me down and I started to think back over the whole weekend from a different and calmer point of view.
The next emotion I faced was shame. How could I have felt sorry for myself? What a waste of my time! I realized that I let my embarrassment and pride overrule my sense of balance. While I am seeing losses in some areas of my mobility and thought processes, I know deep down in my heart that I am a person who has many blessings. I can’t lose sight of those blessings and I can and will find a way to overcome these memory problems. By the time I got home I had a plan in place and I asked my husband if he would help me. I am going to try and repeat back to him and others what I hear them say to me so that I know we are both understanding the same thing. I am sure that when my children return from spring break they will think I have lost yet another marble when I start repeating what they have just said to me.
Attitude is everything and I will try to keep self-pity at bay. It is much more fun to be happy. I really do not want a trip to the woodshed with Senators Owens and Powell, so positive attitude for me.
Joy
I was going out of town this past weekend to help my better half pack up and empty a space that we have recently rented out to others. I thought I was doing so much better with my memory/cognitive skills that maybe I was getting a little lazy about it. While packing up the car for the drive to meet him, I remembered that I was not supposed to bring the coffee table we had sitting in the garage. I very strategically took some meat out of two different freezers and packed it in one cooler to take with me. When I spoke with my husband that morning, I was proud to tell him that I had remembered the meat and it was in a cooler beside the car so I would not forget it. He told me that he had already told me once that we were not going to grill the meet and he needed me to leave it at home. I clearly did not remember that conversation but shrugged it off, no harm done.
During the next two days of packing various items I had to constantly ask him the same question more than once on different topics. I tried to tell myself that I was confused because we were talking about twin beds and full beds and doing one thing with the twin and something different with the full. It sounded like a good excuse to me but by the second day I was getting frustrated at myself for having to constantly ask him to repeat himself to me. In my mind, I was thinking about how way back when I was in kindergarten the teachers would use a straight pin to attach a note to your shirt so your mom would get it when you got home from school. Maybe I need to pin notes to myself so I would not forget.
Here is the event that put me over the edge on my path to self pity for a humiliating 2 hour ride home. After we went to a lunch where my youngest son held my phone, I realized after he left with his grandmother, I had neglected to ask for my phone back. My husband called and said they were not too far up the road, and I said I would meet them at Wal-Mart . I took off to sit in the parking lot at Wal-Mart to wait for the phone and a second chance to force my youngest to hug me yet again. After waiting for 45 minutes, I decided that something was wrong with the plan and I should call. Guess what……………..there are not many pay phones these days and more important, the ones that are available do not work but take the coins from your fingertips.
I started driving towards home, and after 3 more stops, was unuccessfull finding a payphone. My fourth stop at a grocery store led me to a young girl who handed me her cell phone and I called my husband. He asked where I was. After I told him I waited for 45 minutes and they never showed up, he told me that he had my phone. They had come back to our condo to bring the phone and he thought I was going downstairs. He had told me before I left that they were still close by and coming back but I had it fixed in my head to go meet them at Wal-Mart. A major misunderstanding on MY part.
I thanked the sweet girl at the grocery store and went out to my car and started crying. I was wondering if I was losing my mind. I was worried that next time I might forget or misunderstand something that would cause someone pain or even hurt them physically. I was imagining that I might forget and leave one of my children somewhere or not remember who I was. This was all during the self-pity phase when I was thinking to myself that these memory lapses could get bad, very bad if I let them. Where would I be in five years at this rate?
Paranoia hit next. Where was everyone in my family? Was I supposed to be anywhere soon to meet someone? What else had I forgotten? I thought back and I could remember my childhood and college years and most things that I am sure I was supposed to retain from the first 43 years of my life. Short term memory seemed to be my BIG problem. Panic hit a little on top of paranoia to make a nice little cocktail of anxiety surge through my chest. Now I was not only losing my mind, but hyperventilating on top of that. Would I even remember whom I would need to call, or their number, if I had to pull over. Now back to one of the original problems, I DON’T HAVE A PHONE WITH ME. I needed to just get home, would I remember the way.
After I passed the half way mark, I started to calm down a little bit and started making notes on the pad of paper I carry in the car. The list included things I needed to do when I got home, things to remember for the upcoming week, research to do on memory vitamins and various pages of other “stuff”. My handwriting has never been very graceful or elegant and since the MS has started affecting my right hand, it has increasingly become worse. Trying to read a pad of paper written in a car while driving with a combination of messy writing and a wet marks is difficult sometimes. The therapeutic task of writing did its trick and started to calm me down and I started to think back over the whole weekend from a different and calmer point of view.
The next emotion I faced was shame. How could I have felt sorry for myself? What a waste of my time! I realized that I let my embarrassment and pride overrule my sense of balance. While I am seeing losses in some areas of my mobility and thought processes, I know deep down in my heart that I am a person who has many blessings. I can’t lose sight of those blessings and I can and will find a way to overcome these memory problems. By the time I got home I had a plan in place and I asked my husband if he would help me. I am going to try and repeat back to him and others what I hear them say to me so that I know we are both understanding the same thing. I am sure that when my children return from spring break they will think I have lost yet another marble when I start repeating what they have just said to me.
Attitude is everything and I will try to keep self-pity at bay. It is much more fun to be happy. I really do not want a trip to the woodshed with Senators Owens and Powell, so positive attitude for me.
Joy
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