Wii Fit and Multiple Sclerosis

Last year about a week before Christmas. I received another MS magazine and I was reading some of the articles. I saw that Fellow MS'ers had written in wishing for a Wii Fit to try to help them with there MS. Of course not being the type to play video games, I thought How ridiculous!! Of Course for Christmas my kids received enough money to buy a Wii if they put all their money together. So as shocking as it was that they all were all agreeing to put all there money together and purchase something. We woke up the next morning and went to Game Stop ( a video game place) and they purchased the Wii. While I was there I looked at the Wii Fit attachment and read on the box what all it works on. I spent time talking to the people working and they said it was excelent for working on BALANCE issues along with a lot of other stuff. Since the kids spent so much they got a credit and by the time we left I was able to buy the Wii Fit for 60.00.

Of course I was fighting the kids for finding the time to use it. But I tried it a few times before my last relapse that lasted about 5 months. About a week and a half ago I started getting on it every other day. I am a private type of person and since I know that my balance is horrible I never get on it around the kids. When I first started a week and a half ago my Wii Fit Age was (82) because of my weight and BMI but because of my balance and agility tests that this game tests you on. The day before yesterday I was at a Wii Fit age of 37 (I am 36 years old and will be 37 this October.... Shhhhh don't tell anyone. I never tell anyone my age)

Now of course Wii Fit has Yoga, exercises, cardio workout stuff but most importantly balance activities. Everyone with MS knows how our balance is affected. I need to also add that that the Wii fit is for people that can stand. So this might not be for everyone but for those that can stand it is great. Wii in general is capable of helping anyone of all stages for exercises. There are many activities but I am going to only talk about the Wii Fit.

I highly recommend to put your piggy bank money towards getting yourself a Wii Fit. It is well worth the money spent especially if you don't do a lot of exercising. By improving your balance and agility it can help fight the MS.

This program allows you to personalize your own person. It keeps track of how I am doing and also allows me to see the difference on how I am doing. A week and a half ago I wanted to argue back at the TV and say... " Don't you understand I have MS and my balance is going to be bad so that is why my Wii Fit age is so poor" and then I realized that the Wii Fit doesn't hear what you are saying nor does it care. But now that I have seen the improvement I think and can see how much it has helped. I know this will go up and down based on how my MS is affecting me but I need to remind myself that I can get it back to normal numbers when the MS settles down. I also know that rehab centers are even using Wii Fit for rehab on all sorts of medical conditions and can modify some of the exercises by using a chair in front of you to assist you in balance.

The way I see it.... It is just another way to fight this disease and not let it control your life.

http://www.mssociety.org.uk/applications/discussion/view.rm?post_id=574375&id=14320

A Wedding dedicated to MS!!

I went to a wedding yesterday that the couple who got married has friends and a few family members with Multiple Sclerosis. Both the bride and groom have been married before so they had a quaint wedding outdoors and a reception at the same location. Half of all proceeds went to the MS association along with a 50/50 drawing that 50% went to MS Association also.

How cool is that. Here, neither have MS themselves but did something so wonderful for their friends and family member and all other MS Sufferer's.

I realized something though. I have been dealing with this for almost 3 years now. And I have good and bad days along with horrible days. I saw so many of my friends yesterday that I haven't seen in 3 years. They couldn't get over and they were making so many comment on how good I looked. I even felt good for most of the time I was there. I saw someone I have know since childhood that was diagnosed at the age of 16-18 years old. And she has had MS very bad. She looks good however I know her MS is progressing and other problems are happening. And then I saw someone that was diagnosed in the last 2 years and looked horrible. I could tell how much he was suffering. What went through my mind is how many ways the same disease can affect people in such rapid or long periods of time and the severity changes drastically for all of us.

UPDATE:
I have had a rough week and I believe mostly due to the heat. the last couple days the temps and humidity have dropped. Of course so I have been feeling a little better.

I have enjoyed many fun times with my kids and I wasn't able to work very much last week but this week should be good as the weather is supposed to cooperate.

Once again another month has gone by and I dont' know where it went.

I am shocked and amazed at all the deaths of very popular and well known people.

POLL UPDATE!
Thank you for participating again on the polls. There are 2 days left to vote and again we have seen and heard how helpful these polls are for fellow MS'ers and loved ones. Please continue to take part and pass the word along.

I am not sure when I will have the time or ability to post again. Sometimes I think I wont be up to posting or to busy and then I post 14 posts and then some times I can only do 1 in a week.

New Poll of the Week

Sorry it has been a while but I have been down for the count...

The NEW POLL of the WEEK has been posted.

For those of you that are new to this.
These polls are to help our fellow MS'ers but also for friends and family of MS'ers to better understand what we go through and how MS effects us.

The results of past polls are further down on my page under my blogs.

For those of you who have continued to take part in these polls..... Thank You and please continue to take part but also to encourage others to take part. The more that participate the more of an impact we will have.

Tara

Hypersensitive and Heat Update!!!

Well, we are still in the 90's with super high humidity. They are saying with the humidity it feels like 105 degrees. Today will be 94 towards Chicago and probably 97 where I live.

The heat is really causing me troubles. I posted about that in my last blog. I work in kind of what I would call a "HUGE GARAGE" no air. I went to work yesterday and my boss went and got me a Gigantic Lemonade to drink and to help cool me down. It did help a little and we have some fans out by me. The fans only helped a tiny bit. I did leave work early so I could come home and get some sleep in my room where we have a little window air conditioner. I live in a farm house that is 190 years old. So the only air we get is one tiny apartment size air conditioner in my room and in the living room. They are not strong enough to do much but I just keep myself in those 2 rooms.

The hyper sensitivity that I have been experiencing is horrible. I even had my Mom cut all my hair off. (very short) last night because even my hair touching my skin was hurting. I have found that my Clonazapan medication has been helping also with the burning and prickling sensations.

I will say that yesterday wasn't as bad as Monday. Monday got so bad that even the air blowing on me hurt.

I have had a loto of feedback regarding the ice packs I talked about in my last blog. They do really work. As for the men... Sorry to say that the "under the boob" packs probably won't help but who knows??? If you are laying down maybe they would?

I am sorry I haven't been posting on everyone's blogs and when I get to feeling a little better I will take a day or two and read up on everyone.

Heightened Sensativity and MS Exacerbation

Heightened Sensativity and MS Exacerbation!!!

It is Monday Morning and I am feeling worse today than I did yesterday. I was laying in bed trying to sleep and I am prickling everywhere. My whole hands and feet and legs and I feel like someone is touching me with a curling iron on my back, shoulders and arms.

Usually I wake up in the morning after a bad day and I feel great and as the day goes on then symptoms come on and progress. Today is the first time in a long time that I have woken up in the morning feeling horrible and scared to see how much worse the day is going to get. If it progresses worse I will be in real bad trouble. I already can't have anything touching me. My clothes hurt, my blankets hurt and worse yet even the wind from the fan is even hurting me.

I have come to the conclusion that it's not just burning and prickling it is what I will refer to from this point on as "HEIGHTENED SENSATIVITY" .
I looked at the weather channel hoping to see the weather getting back to better temperatures and instead I saw that we will be in the middle 90's for the majority of the week.

I know know to have the ice packs ready. At work it is very hot and we don't have air conditioning. When the garage doors are open we get a good breeze if there is wind but this week is going to be horrible. so I am trying to think of how to use my ice packs at work without looking ridiculous to the customers.

For anyone that is new to MS...
Ice packs help to keep your body temperature down. When your temperature rises even a degree it can bring on MS symptoms. It can feel like you are beginning an exacerbation but it is called "Pseudoexacerbation" (According to the technical term. In my words it is called a fake MS attack. Usually once your body temperature drops back down the symptoms tend to subside either all the way or at least a lot more then they were. Ice packs work!!! Always keep some in the freezer or in a cooler if you are going to be out in about. The neck, wrists, back and legs are great places to place them. I have even found one place better (at least for the women....) Place a small Ice pack in your bra either in the cleavage or under the breats. I usually don't put a honking huge ice pack there but you can use some other things. I have paper towels, wet them down fold so they are small and flat, Keep in freezer and they will fit perfectly. Or you can use frozen peas in a ziplock bag. There is also another one... You can order or request for free from the MS Society free "Under Boob" coolers. Now is the time to request this. The MS Society has a program for free for MS'ers that you can choose 3 types of cooling products from a list and they will send them to you free. It is a great program but it is only until supplies are gone.

MS is back again. Symptoms are bad!!!

I want to wish a Happy Father's Day to all Dad's out there. Even if you are not an actual dad there has probably been someone in your lifetime that you have been a father figure to. (Sometimes you may not have even known that you were looked at that way)

Update!!!
I have been on a roll for about a month and a half now. I have had a lot of energy, been able to work full time, spent more time with my family, I've been doing cleaning and so on. Until the last few days. About a week ago my intestines shut down again, I have been having burning and prickling sensations very bad and the muscle spasms have been unbearable. The odd thing is that the fatigue hasn't gotten worse. The fatigue has been there but I can't seem to fall asleep which of course makes things even worse. I know that the heat has been real bad and that may be causing some of the issues.

I am afraid of going through another exacerbation. I just got over a four month one and I know I didn't take the steroids. The Doctor said that this could happen. I am very frustrated. For once things were feeling very normal (Like the Pre MS normal).
As much as I wanted to just stay in bed today with the fans blowing on me. I couldn't ruin my husband's Father's Day. I would never have forgiven myself. I may have had my Mother's Day ruined by this stupid disease but that is My Day and My Problem.

I am having so many problems typing because my finger tips feel like cactus's are in every finger tip. And the burning sensations in my back and shoulders and arms are horrendous.

So I will stop here.

Floaties???

Today was the typical Illinois humid Summer day! The temperature is about 89 degrees and humidity of 100%. I worked all day today. The heat was so bad that the concrete floors were sweating.

So when I said "FLOATIES" you would think I was talking about the little orange blow up things to go on my arms so I could go swimming, Right??? No I am a good swimmer.

The "FLOATIES" I am talking about are the floaties in my eyes. Periodically I get them. It has been awhile since it has happened but here I was at work working with a customer. Walking strange so I wouldn't fall on the floor and swatting at these little gnats. Or at least what I thought were gnats. That is until I saw the look on the guys face as I was standing 1 foot away from him and swatting away. It was then that I realized they wern't really gnats they were "FLOATIES".

I can not even imagine what the gentleman was thinking watching me swat at nothing. He probably thought I was on some drugs or something.

Needless to say I was SUPER EMBARRASSED. What was funnier is that I was even laughing about it once I realized what was going on.

So let me give you the quick full version.... I walk over to him in a strange and odd way (trying not to fall) while swatting at nothing ( invisible gnats) and giggling to myself (but out loud)

Does anyone else with MS ever get floaties? I always wonder if it is something else or if it is MS related.

People Pleaser!!! Stress Can and Will Exacerbate MS!!

I am what I guess you would call a "People Pleaser" I have spent almost my whole life doing what I can to help people or try to make them happy. I forgive almost everyone no matter how badly they have hurt me. I just feel like life is to short to stay angry. And angry only wears me out. I spend exhausting hours trying to understand why someone hurts me or tries to hurt me. I can't understand why they would do it to me when I would never purposely do anything to hurt them or be mean to them.

With that said... I still as an adult find myself stressing and getting upset when somebody doesn't like me. I can't figure it out. I would bend over backwards for people and yet they purposely try to hurt me.

I thought I had gained some strength a few years ago when I confronted some of the people who were hurting me or treating me badly. I felt empowered a little by doing it and at the same time I found myself to be a little less stressed.

Lately I have found myself stressing and having anxiety attacks over 2 people that just continuously try daily to make my life miserable. I really do believe that they do it to try to get my symptoms to flare up.

How can people enjoy making people miserable? Or do everything in there power to stress me out. I personally don't like these 2 people. I wouldn't want them as friends nor do I respect these 2. But yet I let them stress me out. I know I shouldn't let them even phase me and I act like I don't but then I come home and find myself having burning and prickling sensations from being stressed.

I would not stoop to there level because what is the point? But I have enough on both of them that I could hurt them if I wanted to. I just am not that way. Everyday that goes by I find myself falling lower and lower getting closer to there level and wanting to hurt them like they do to me.

Don't people (ADULTS) have better things to do then spend all their efforts trying to make me stress out until I get sick enough that I cause my own self to have another MS exacerbation? I think that is what makes me so mad. I don't care about these people but yet I still let them have that much control to make me sick.

My family gets so mad at me for letting people get to me like this. They say " just stop" or "who cares what they think or say" but I am not the type of person who can just say OK today I am going to stop letting people get to me. I have been this way for the 36 years of my life it is not something I can just change. I know I shouldn't allow these people to stress me out like this.

In conclusion.... I can't give advice out to people on how to handle these situations but I can give this advice out to people with MS...

Stress can exacerbate your MS. If you are like me try to find ways to destress if you can because I don't want you to be like me and stress yourself so much that your MS is exacerbated.

MS Polls Ending in 12 Hours

MS POLLS ENDING IN 12 HOURS

We only have 15 Fellow MS'ers that have taken part in the polls this week.

Please take a few seconds and participate in the polls.

These polls are to help each of us but to help FELLOW MS'ers see that they are not alone and also to help them/us learn a little more.

Please help spread the word to others.


Happy Thursday To Everyone!!!

Secondary Progressive MS Treatment Trial Information

The medical information I promised to pass along. I don't know anything more about this treatment then what is currently posted. However I have someone that I can ask questions to if you have any. I am only passing along this information that was given to me. In my opinion if there is anything to help our fellow MS'ers with Secondary Progressive MS then we need to pass along whatever we can to help them fight this battle.

Here is the information that was sent to me.

1) This treatment actually delays disease progression (the first MS treatment to do so), and doesn't just treat symptoms.
2) It's the only treatment in trials specifically designed for SPMS patients - an entire subgroup of MS patients with NO treatment available to them (besides Novantrone, which elicits awful side effects and is a cancer drug.)
3) Dirucotide has no known side effects.


Frequently Asked Questions About

Dirucotide and the MAESTRO-03 Clinical Trial

What is MAESTRO-03?
MAESTRO-03 is a double-blind, placebo-controlled Phase III clinical study that is evaluating the efficacy and safety of a proprietary drug called dirucotide. Researchers hope that dirucotide could become a leading safe and effective treatment in delaying disease progression for secondary progressive multiple sclerosis (SPMS). MAESTRO-03 is evaluating the only novel agent in Phase III clinical trials anywhere in the world for SPMS.

What is SPMS?
SPMS is an advanced and especially debilitating form of MS characterized by an irreversible decline in both neurological and physical function. Of the estimated 400,000 Americans and 2.5 million people worldwide who have MS, approximately 40 – 45 percent have SPMS.

While there are numerous treatments available for MS, there currently is a lack of safe, convenient and effective drugs that are specifically indicated for the treatment of SPMS.


What is dirucotide and why is it viewed as a potential treatment for SPMS?
Dirucotide is a synthetic replica of the molecular site on Myelin Basic Protein (MBP) that is a dominant site of immune attack in MS patients with immune response genes DR2 or DR4, which are found in 65 to 75 percent of all MS patients. Periodic high dose intravenous administration of this synthetic peptide is believed to induce and maintain immune system tolerance to this normal nerve component. It is not expected to affect immune system reactions to substances unrelated to the injected peptide.


How has dirucotide performed in previous clinical trials?
In a study published in the European Journal of Neurology in August 2006, dirucotide showed a five-year delay in median time to disease progression in a subgroup of MS patients who have immune response genes HLA-DR2 and/or HLA-DR4. Dirucotide has been administered to MS patients in clinical trials for more than 14 years with more than 1000 combined patient years of treatment experience. Ongoing follow-up confirms that the side-effect profile is favorable.

How will MAESTRO-03 evaluate dirucotide’s impact on disease progression?
Patients enrolled in MAESTRO-03 are administered either dirucotide or placebo intravenously every six months for a period of two years.

Efficacy will be defined as a statistically and clinically significant increase in the time to progression of the disease, as measured by the Expanded Disability Status Scale (EDSS). The EDSS is a method for measuring different levels and types of disability caused by MS. The entire study period, including pre-treatment and possible follow-up visits, could be up to 44 months.


How many patients are participating in MAESTRO-03?
The study has enrolled approximately 510 male or female patients, ages 18-65, at more than 65 sites throughout the United States. Patients have a documented history of SPMS and have tested positive for immune response genes HLA DR2 or DR4. In addition, subjects have had an absence of relapse in the three months prior to their baseline visit, and have an EDSS score in the range of 3.0 - 6.5.

Are there any other studies underway for dirucotide?
An additional Phase III clinical trial evaluating dirucotide as a potential new treatment for SPMS – MAESTRO-01 – is currently underway and fully enrolled with 611 patients in Canada and Europe.

Who is developing dirucotide?
Dirucotide was discovered by two research scientists at the University of Alberta in Edmonton, Canada. The drug has been exclusively licensed by BioMS Medical Corp., a Canadian-based biotechnology company listed on the Toronto Stock Exchange (TSX: MS).

On December 17, 2007, Eli Lilly and Company (NYSE:LLY) and BioMS Medical announced a licensing and development agreement between the two companies granting Lilly exclusive worldwide rights to dirucotide. Under the terms of the agreement Lilly and BioMS Medical will collaborate on the development of dirucotide and will also share in certain development costs with Lilly being responsible for future R&D, manufacturing and marketing activities. BioMS Medical continues to oversee the current clinical trials for dirucotide.

Link to Information about the Company BioMS Medical
09-BioMS_FS Spring 09.pdf - Google Viewer

Lumpy Bumpy and Grumpy

After taking my daily shots I have become LUMPY, BUMPY and GRUMPY!

I don't know what it is but I do what the nurses have advised me to do and that was to use a warm compress on the site 24 hours after the injection. I rotate my shots however I don't have any fat in my upper thighs to use those locations. I have trouble reaching the back of my upper arms so I rotate between hip, stomach and other hip or should I say fat roll? When I first started taking the shots I used my upper legs and then I ended up with all these indentations in my thighs. So I though WOW if that's the case then giving the shots in my stomach,and fat rolls or hips (which ever way you look at it) then it should indent those areas and I will look skinny. Kind of like liposuction for free.

That is not the case though. Instead I have these itchy lumpy bumpy blobs in those locations. Not attractive to the touch. I don't think it is noticeable to the eye but to the touch it is horrible.

I was just sitting here feeling my LUMPY BUMPY ITCHY BLOBS and decied I would share my thoughts with you.

Update, Rain and Pain, and new Drug information

Well It's raining cats and dogs outside and apparently going to do this for the next few days. I don't know about anyone else but the rain brings on a lot of leg/hip pains for me. Not just spasms but tendon, muscle and bone pains. It feels as though my bones are breaking.

I worked all day today and accomplished a lot but my legs couldn't handle anymore so I brought some work home for me to do while in bed.

Yesterday I posted about feeling good and being afraid to enjoy it. So I wanted to update you all and let you know that I got out of bed and grabbed my daughter and made her go fishing with me. (She hates fishing) within just a short period of time my Husband and one of my sons joined us and we fished for a few hours. We got a lot of bites and I did catch a crappie. So I was happy. I stayed up til about 11 last night and then of course couldn't wake up this morning. I went to work about a half hour later than normal but all was good.

The problems I am having today is not a set back nor does it depress me because I know it is only like this when it rains. It does not mean I am having another flare up so I will just deal and cope for the next few days.

I noticed some more people took part in the polls last night and I want to thank you all for it.

Lastly, I was sent some information regarding a drug that is in the currently in the phase 3 trial. It is working for Secondary Progressive MS'ers along with an entire subgroup of MS'ers. I will read through this information and pass it along to all of you. I will say that what I have read so far seems promising. I by NO means am anyone that can decide or say if it is good or not but if I am given information and it helps anyone then I feel it is my duty to pass the info along. In my opinion if any drug can help Secondary Progressive MS'ers then the info is well worth it. I will be posting about it later today or tomorrow. So stay tuned!!!!

Polls!!! Please Take Part.

If you have ever wondered how you can help other MS'ers but never knew how. Then this is one way to help.

Just a Reminder that there is only 2 days left to the polls for this week. I have had so many people e-mail me responding how these polls are helpful and interesting. Please continue to take part and spread the word. It only takes a few seconds but goes a very long way in helping fellow MS'ers. And remember I am always looking for ideas for polls. Just post the idea and tell me not to publish or e-mail me the ideas.

The results of past polls are further down on the page below my blogs.

Thank You everyone for taking part in these polls

When the Pains Go Away??? Afraid to enjoy life!!!

I was just reading Carole's MS blog and it gave me a few thoughts.

In the 2.5 years since I was diagnosed but actually 3 years since this whole thing started. I have had many many bad days, weeks, months. I have had break through good days also. The first year I didn't have that many but the second year I started having good days and even good weeks.

I know that everyone's MS hits everyone differently but even from the poll's I have done we share a lot of the same symptoms.

The point I am trying to make is that when all of a sudden you have a couple days in a row that you feel good or even great it is hard to enjoy it. You kind of are taken back and yet you are in such a routine of feeling bad that you don't know how to deal with it. A lot of times by the time you even realize that you are feeling good it's the end of the good days.

I know that I am so used to coming home and being in bed most of the rest of the day with severe pains and spasms and fatigue. And then I have GREAT days and I come home and climb into bed and maybe fall asleep for a hour or two and then I am wide awake. Rip Roaring Ready to go. But yet I find myself staying in bed enjoying the NON-PAIN. Afraid that if I get up and do something that I will suffer later. It is a crazy feeling.

I am currently on week 3 of being out of my exacerbation. I feel really good. I am working full days at work. Yes I am exhausted and the normal symptoms are present but the fatigue is slowly fading. But because of my normal routine I don't know how to break the cycle of coming home and being in bed because that is what I am so used to. Plus I have the fear that if I don't stay with that routine the good days will come to an end.

Does anyone else feel that same way or am I all alone on this one???

New Polls & Updates From Past Polls

The new Polls of the week are ready.

There are 4 different polls this week.

The purpose of these polls are to help us and other fellow MS'ers. Please continue to take part and to encourage others to take part.

The Results from Past polls are further down on the page below my Blog. Interesting results.

It is still early so if you would like another poll to be added let me know.

Thank you again for all the participation.

The lemon Aid Award

Thank You Myra at Dogwood and Friends for giving me this award. Congratulations to you for winning this award. You truly deserve it. If you get the chance to stop by and visit her blog take a few minutes mare and check out some of her other blog sites.

Here are the guide lines for this award.
Post it on your blog. Done
Nominate others with positive thinking no set number, post links to there sites and notify them. So now it's off to work we go.

Wow, this is going to be so hard because I have read so many very deserving Bloggers that have such positive thinking.


Lisa at http://brassandivory.blogspot.com/

Kim at http://stuffcouldalwaysbeworse.blogspot.com/

Mitch at http://mitchthurmer.blogspot.com/

Denver Refashionista at http://ysestringer.blogspot.com/

Rae at http://myweathervane.blogspot.com/

Jamie at http://jmelivingwithms.blogspot.com/

Kimberly at http://myjourneywithms-kimberly.blogspot.com/

Tristan at http://icanflybutonlyatnight.blogspot.com/

Herrad at http://accessdenied-livingwithms.blogspot.com/

In Memory of Sherry's Daughter. Please Light a Candle

Can everyone please light a candle for Sherry at Word Saladsthe Demyelination of Me
http://wordsalads.blogspot.com/

Her daughter died yesterday June 10. Sherry could use much support right now.

Thank You!
Tara

Advice for Newly Diagnosed with Multiple sclerosis

When I was first diagnosed I found I had nowhere to turn for help. I felt all alone. It is a very hard place to be in. I sat in bed crying for 3 days straight. After the 3 days were done I finally started reaching out for help through the internet. I found all sorts of info. Some good and some very scary and not helpful at all.

So I would like to try a open forum of ADVICE for newly diagnosed fellow MS'ers. I am hoping everyone that reads this will give some input as to either words of encouragement, tips, tricks, advice, etc...

There are so many people everyday finding out they have MS or might have MS and are in the same place we were all in at one point or another. I know we can help.

I will start with my advice:
First off let me say that as alone as you might feel. You are not alone. You have just become a part of a very large family or fellow MS'ers. Be careful where you go for information. There are a lot of places that are good but some are not the best places for advice. Take your time to absorb the information. When family and friends hound you with phone calls. Dedicate someone to update everyone or like I did. I sent an e-mail to everyone every once in awhile to update and thank everyone for there concerns but I also stated in the e-mails that I wasn't capable of talking to everyone at this moment because of the emotions and that I knew everyone was concerned and wanting to help. I thanked them and told them I just needed some time but I will need help in the future and if and when I was ready I would ask for help. That stopped the phone from ringing off the hook. Also every time you go to the Neurologist or Doctors re: MS. Bring someone with or a recorder and a notebook. Sometimes when you are there you hear what the Doctor is saying but you can't absorb everything they say. The notebook is for you to write down questions and symptoms so when you are at the Doctors you don't draw a blank and you can get the answers to the questions you had thought of.

Tremors...Tremors...Tremors... Anyone Else Have Tremors???

It has been tremor city around here. I really believe that last "flare up" of 4 months ended about 2 weeks ago. However the newest thing is tremors in my fingers. I kind of find them funny in a way but also aggravating at the same time. When I am doing something at home it doesn't bother me but when I am typing or at work writing something in front of a customer all of a sudden my pinky will start tremoring and within a few minutes it goes to all fingers and then eventually the whole hand.

Does anyone else with MS ever deal with tremors?

Sometimes my head will start to do it. I had that start years before being diagnosed and the funny thing is that I didn't think other people could see it and one day I was at the Doctors and I had my husband there with me and I told the Doctor about my head tremors. He asked how often and how long had this been going on and I said it didn't happen very often so that he wouldn't want to run any tests on me. But leave it to my husband to open his mouth and told the doctor it happens a lot and it gets worse at night. I of course looked at him with the evil eye and the doctor at the time said maybe it had to do with caffeine. So he let it go. But when I had my GIGANTIC flare up 2.5 years ago it started up really bad.

Anyways, the tremors are back so I assume my antibodies decided to leave the bowels alone and move on to the area that affects tremors. Gotta love antibodies!!! I usually try to laugh when all of a sudden something is triggered I seem to think ok that must be the new area the antibodies are attacking.

Those sneaky things can't hide from me.

Polls ending in 7 hours and then new polls starting up in a day or so. I am still hoping more people will take part.

I am looking for ideas for the new polls. Any suggestions??? You can publish it or just e-mail me or send a comment with your ideas but let me know if you don't want it published.

Happy Wednesday!!!!!

The Ups and Downs of This Week and a Thank You To All Of You!

This last week has had it's Ups and Downs!!

-My kids are officially on Summer vacation! - UP AND DOWN

- I have been working a lot! - UP

- I spent the weekend with my Mom and was able to make up for Mother's Day! - UP

-Stress has been decreased a lot! - UP

- It's been raining a lot so the pains in my legs are horrible! - Down

-The fatigue seems to be going away! - UP

- Actually not able to sleep much at all and don't know why??? - UP and DOWN

-This one is kind of weird but not having incontinence problems but instead can't stop Peeing! Full Bladders full every 5 minutes. Mostly in the afternoon! Down

- I haven't taken any time to go fishing in over a week as planned but that's because of the pains in my legs. DOWN DOWN DOWN

- I colored my hair to cover some gray's that I found and it was supposed to turn out dark brown and instead lightened and reddened my hair. I think somone played with the boxes at Walmart!!! - Down - not the color I wanted!! - UP - a lot of compliments

- Accomplished another cane and shipped out. 2 more left to go. - UP AND DOWN


So at the moment this is all that comes to mind. As you can see there have been many UPS AND DOWNS this last week!

A HUGE Surprise!!! So many people have taken the polls. There is still 1 day left to vote for those who haven't!! Thank You Again. Getting ready for the next poll.

Have a Wonderful day Everyone!!!

Multiple Sclerosis Polls!!!

OK... So I lied... I said I wouldn't be posting for the rest of this week. But my brain is on overload.

This one is going to be Short, Sweet and to the point.

I realized that school is getting out and so a lot of parents are busy with that so I have extended the time to take part in the polls.

I know that you all haven't been getting the e-mails I have been getting from MS'ers and loved ones saying how they look forward to these polls and how helpful and insightful they are to them and their loved ones.

Please help by taking the quick polls along with letting others know about taking part in them.

OK.... Have a great weekend and thank you for your help!!

Perseverance and Multiple Sclerosis

Perseverance

When I was diagnosed. Just like everyone else you go through all sorts of emotions.

I had been going through the ANGER and SAD emotions for a long time. One night I was at a retreat and I woke up in the middle of the night with a word being said over and over again very loud. I knew I had heard the word but didn't know really what it meant.

The word was Perseverance.
I woke up a friend of mine sleeping in the next bed over and asked her what the word Perseverance meant. She explained it to me. I didn't understand at that time why that word kept being said in my head while I was sleeping especially because I never use that word. I never forgot that word. When I got home from the retreat I looked up the definition and here it is:

Perseverance

Perseverance is demonstrated by those
who keep going when the going gets
tough, who never give up


Since that night I have tried to live everyday by that definition. I still have my negative days when I am having a really bad MS time but for the most part this word is what has helped me get through dealing with this disease and maybe it will help you.

DON'T FORGET TO TAKE THE CURRENT POLLS. ONLY 2 DAYS LEFT!!!!! WE NEED EVERYONE'S HELP

Drugs and Multiple Sclerosis Doctors Don't Always Know!!!

Being a victim of Multiple Sclerosis. No matter if you are newly diagnosed or not. There are many many BAD days! Then all of a sudden after many bad days You find that all of a sudden you get a good few hours or even a good day. Then very bad days and then a good day or two. And after a while once things get on track you start to have a little more good days, bad days, and very bad days. Multiple Sclerosis is a SNEAKY disease. Then out of nowhere you may even get a good month and you start to think "is it gone"? Or maybe you think...I am afraid to blink because "I know it is going to come back".

From the beginning of being diagnosed the Doctors throw all sorts of drugs at you. You are told that you have to start taking shots, then different drugs for the different symptoms. One thing everyone needs to understand is that there is NO CURE. A common misconception from newly diagnosed and friends and family of MS'ers. You will hear comments and maybe even feel the same way. But the comments are: Why aren't the doctors putting you on the right meds to get you better. Along with many other wonderful comments. The truth is that there are meds that help with different symptoms but sometimes they don't work for you. What works for some may not work for all. And depending on the symptoms you have and the number of symptoms you have. You could have 12 different medications that you have to take 3 times a day plus your shots. Each drug has its own side effects. I am not saying don't take the medicines because God knows that I have a lot I have to take. However, we all must know that no matter how many meds you take it is not going to cure MS nor is it going to take all of our symptoms away. When you are in a time where things are under control. That is when you can chose to keep taking all the meds even when symptoms are not present or take away the ones that are not needed during those times. The difficult part is you get so custom to taking the meds that you don't know what meds are helping what symptoms. Talk to your Doctor and ask what each drug is for. Write them down and that will help you to decide.

My own way of dealing with MS is trying to look at it like a horrible virus like the FLU. When it is here, I am down for the count and not in good shape. When it is gone (yes I still have the normal symptoms but just not severe) then the "flu" is gone and try to enjoy what you can and make the most of it.

Doctors don't always know what is best for us and also they are not with us everyday to tell us when we don't need certain drugs and when to take them.

Update, MS Polls, and Life In General

Thank You everyone for taking part in the Poll last week. Fatigue seems to be the winner. Next came Balance problems and then Muscle Spasms. We had 36 people take part in the poll. I have 3 more poles going now. I find them to be extremely interesting to see the results and I have had a lot of feedback from many people saying they love seeing the results. So if you haven't, please join in and take the weekly polls.

UPDATE:
As for me I finally went to work today. No problems happened today. I was very overwhelmed with all the work that needs done since I wasn't there for 2 days. Thank you everyone for your comments and support. I forgot to mention that my husband is a cop so he made a phone call and just recommended that he should not talk to me. What he was doing was harassment. So, for now as long as he stays away then we will be fine and I won't have to proceed any further.

My advice for anyone in a situation like this is to take action. Stalking and Harassment should not be tolerated in any case but when it comes to the elderly or disabled it makes things much worse. It brings on a lot of undo stress which in return can trigger you illness to get worse. I found out that if you are ever in this situation. Go directly to the State's Attorney's Office and file for an order of protection. The other option is to call the police and tell them and you actually do have the right to have them arrested. For me that would put even more stress on me. I don't like to have enemies or make trouble for other people no matter how they treat me. However, if pushed far enough then I have to put myself and my family first.

I worked a full day today, came home and took a nap, and then woke up and worked on another cane, had dinner with my kids who are counting down their last 2 days of school. So I will be working a lot the next few days, working on a few more canes and then helping my kids get through these last few days with tests, projects and finals. Instead of posting I will be reading and catching up with everyone else's blogs.

By the beginning of next week I will have a lot to talk about I am sure. I just hope to see everyone taking the time to do the polls. And again if anyone has any suggestions for next week's polls please feel free to suggest away and if you want it to be private send me an e-mail.

Harassment, Bullying and Stalking

Harassment, Bullying and Stalking

Last Friday my Ex- Boss came in a started screaming at me (at my new job that just happens to be right next door. He came in 5 or 6 times. I handled it ok at least in the eyes of everyone in the shop and the customers there. However, when I came home I was ready to cry and yet at the same time thinking horrible wishful thoughts about him. I did go to work on Saturday knowing he was not going to be there. Yesterday my new boss left it up to me if I wanted to come in or not. I usually have Mondays off but now with things being so busy and crazy I can work Mondays if I want.

Yesterday Morning I had already chosen not to go to work. But I was having horrible anxiety attacks all morning. I couldn't get them under control. All I kept thinking about was what he was going to do today when I came to work. A few hours later I got a phone call saying that now my old boss was causing troubles and mad at my new boss. I guess you have to understand that my old boss is a trouble maker, drama lover and creator, very intimidating and a complete control freak.

With that said... I did a little research last night and looked up the IL definition of Harassment and found that what he is doing qualifies. I also looked up IL definition of Stalking, and guess what?? It qualifies!! But the best one yet is that In Illinois If someone stalks or harasses a disabled or elderly person it is a class 4 felony instead of a class 2 felony for someone that is not disabled or elderly.

Do I really want to go that route??? NO...But if I am going to be scared and trembling every time he decides to come in and cause a problem then I may have to. I need a job and I should not have to leave and quit my job because of him. So I will keep this info in my back pocket along with a few copies of this on my desk (hoping he will see this laying there before he opens his mouth to me).

Did you know that when someone continues to follow you a disabled or elderly person and harass you that is classified as Stalking and Harassment. The harassment doesn't mean hit you or threaten to cause you bodily harm. In a disabled or elderly person it means having someone continuously intimidating you or causing you fear. In this case The law states that because disabled people being caused undo stress or fear can trigger their illness or disability to get worse. It is looked at by every court in the nation as holding a gun to someone.

My current boss has said I didn't need to come in this morning and he would let me know if it was safe to come in by noon. But as I woke up this morning I know that my old boss is wanting me to not come to work hoping that my symptoms will be triggered by the stress he is causing. So I am not sure if staying home is the answer. Part of me says just go and do your job (anxiety or not) and know that all I have to do is make the phone call to the State's Atty. if I need to.

Poll Results from Last Week and New Polls for This Week

There is still 1 day left to vote on last weeks poll. I have moved it down further on the page to prepare for the new polls for this week.

I will continue to leave the results posted on my page. I must say the results were very interesting to watch and others have said so too.

Please continue to take part in the Weekly Polls to help ourselves learn but also to help spread the Awareness.

Please encourage others to fill out the poll's. And Caregiver's are welcome to answer the polls for their loved ones so that they too have a voice.

This week there are 3 different polls. quick and easy to fill out yet the answers go a long way for others.

If you have any other reccomendations for future polls please feel free to ask. If you don't your suggestions posted that is fine. Just make your reccomendations and advise me not to post it. I will then add it to the next set of polls.