Sunday, April 7, 2013

I think this may be the end...

...of my blog.

I am not sure that I am getting readers, and making any difference. I am getting roughly 5 viewers a day, but no one leaves a comment or emails me, so I am not sure that anyone is getting any value out of my random thoughts.

Thursday, April 4, 2013

Day 3 of my diet

So day 2 didn't go great. My wife and I both had rough days at work, so we had 2 drinks each last night. Not great, but not horrible. I have been sticking to the diet though, so that is good.

Now it is time to add in some exercise. Do any of you have recommendations for exercises that are kind to someone with some balance issues?

Monday, April 1, 2013

Weight loss starting today

I started another weight loss regimine today. When I did it for February and some of March, I lost 26 lbs - without exercising. It was crazy cold outside afterall.

In the 3 weeks that I was off of it, I did gain back 1.5 lbs, but that isn't that bad. I am going to be really good in April, and start exercising. It is warming up so I can walk for a week or two, then I plan on joining a gym. I turn 35on 4/22, and I really want to lose 40 lbs. While I won't be able to do that by my birthday, my goal is 15 lbs in 21 days...with the rest coming off before the 4th of July (yes, 2013).

So, wish me luck. I need to be in the best shape I can be because of my MS, and I am tired of I am getting too old for excuses. I need to drop these 40 lbs.

Pissy mood today

So i am not necessarily in a dark place right now, but not really in an uplifting mood. Pissed at MS today - pissed at all the things that it has taken away from me. All the things that I should be doing, no matter how in consequential, but that I am unable to do.

I am sure that there are some people that will say - think of the gifts that MS has given you. I would say take them back, I want my life back.

But I am not about to have a pitty party - no one ever comes :)

Just in a pissy mood today - it will pass, but I am not in a rush.

Friday, March 29, 2013

Have a good weekend

Have a great weekend everyone, Happy Easter!
I am taking the rest of the day off.

Thursday, March 28, 2013

Today & Good night

I am blessed that I had a good day today.
  • I woke up (always nice)
  • I didn't fall
  • I didn't have an accident (wet my pants)
  • I wasn't in too much pain
  • I was able to kiss my wife

How was your day? I am about to crawl into bed next to my beautiful wife.

Good night.

Where You Can Find More Information on MS?

Where You Can Find More Info:

Copaxone (my treatment)


Wednesday, March 27, 2013

Tempting fate!

I knew it --- deep down I knew my post yesterday about bed wetting and the Depends was a bad idea. I jinxed myself.

MS Tattoo

I was considering getting a tattoo - never thought I would, but was considering getting an small (about 1 inch) MS ribbon over my heart. Does that sound cliche? Rr reasonable?

Do any of you have a tattoo related to your MS?

Tuesday, March 26, 2013

Bed Wetting and Depends

Not Sure what you use for your MS related incontinence, but I use "Depends Real Fit." I hate to admit it, but yes, I wear these every night to combar my MS related bed wetting. I have tried many other brands and other fits, and these Depends Real Fit work the best for me. They haven't leaked yet! (knock on wood)


Here is the breakdown of the vitamins I take - but I would say that thebig thing is that I take 10,000 IU of Vitamin D a day - plus what is in my multivitamin - Does anyone else take a lot of Vitamin D?

Monday, March 25, 2013

REPOSTING: Common symptoms of Multiple Sclerosis

Today I am going to discuss the common symptoms of MS along with my personal symptoms.

I was thinking about writing an e-book with my wife

I was thinking about writing an e-book with my wife about our experiences, but bot perspectives.

Does anyone this that is a good idea?

Sunday, March 24, 2013


So I just watched the last Twilight movie with my wife --- I would be a vampire if it meant I would feel better every day.

Although, I am pretty jaded - not so sure that I could be a "good" vampire.

Why are vampires all the rage in TV, Movies, and books right now? I can't seem to turn on the tv without a vampire being on it. Maybe it is the channels I am watching.

My meds - what are you on?

Yesterday I conducted a poll, and no one replied....

Here are the medications I am on:
  • Copaxone - daily injection of Copaxone (MS Drug)
  • Skelaxin - 1 pill as needed. Skelaxin is a muscle relaxer (to ease spasticity and banding symptoms)
  • Cialis (ED and bladder issues)
  • Bethanacol (Bladder)
  • Alfuzosin (Bladder)
  • Levitra (ED- as needed)
  • A lot of daily vitamins\minerals\supplements
    • Vitamin D tops the list with 10,000 IU
    • Men's daily vitamin
    • Co Q-10
    • Claritin
What are you on?

My legs feel horrible today

My legs feel like concrete columns today.
Not sure what the deal it today - haven't had this issue in ovr a year - isn't MS fun?

Does anyone have some good stretching exercises for legs?

Friday, March 22, 2013

MS & Employment

I am not planning on telling my employer about my MS until absolutely necessary. I have heard of good experiences, but many more bad. I am not sure how my company (large, multi-national, based outside US) will take it. So until my symptoms require me to disclose, I probably won't. I would love to hear some opinions on the matter. Any thoughts?

Thursday, March 21, 2013

Life & LTC insurance with MS

I was lucky enough to get private life insurance before my MS diagnosis - barely. I don't think I could get it now. At least I have piece of mind that if something happens to me and I lose my job and work life insurance - that she will be covered. The only thing I wish I had was Long Term Care (LTC) insurance. I think the premiums would be too big now that I have an official diagnosis.

Does anyone have experience in either life insurance or LTC insurance after a MS diagnosis?

Wednesday, March 20, 2013

More of my favorite MS quotes

Earier this week I mentioned my all-time favorit MS quote - so I thought I would share the other two I really like.

My MS Diagnosis Timeline

I know many people suffer not knowing what is wrong with them for a long time before they are diagnosed. That wasn't the case for me at all.

My MS Diagnosis Timeline
  1. November 2008: Pins & needles over my entire left leg. This was diagnosed as sciatic nerve problems. (It may have been sciatic nerves problems that went away in a few weeks with Aleve or looking back, it could have been my first symptom of MS.)
  2. May 2009: Pins & needles over my entire left leg along with vision problems. My vision was blurry, and just not right, so I went to my primary care physician. This is where is all got messed up. As I was sitting in the doctor's office alone - my wife was at work because we didn't expect anything like this to happen. The doctor came in and said she thinks it could be optic neuritis and that I most likely have MS. I was floored. I didn't really know what MS was at that point. I remember that while she was setting me up with an eye doctor for a second opinion I texted my wife the "diagnosis". When I got out to my car, and collected myself, I called my wife. That was a shitty phone call. I was scared to my wits end, as I am sure my wife was too. She came home early that day to be with me, and we started the journey together. But not before I went to the eye doctor. My primary doctor set me up with an immediate appointment and they saw me right when I arrived a few minutes later. At diagnosis my correct vision in my left eye was 20/100 with blurred vision, and color blind. I went on 3 days of IV steroids followed by 14 days of oral steroids and my vision returned in less than a week.He confirmed the optic neuritis, and referred me to a MS doctor. Neither my wife or I knew anything about MS, but boy did we learn fast when we both got home.
  3. May 2009: I had several MRI’s which confirmed that I had lesions on my brain and spinal column. I was diagnosed with relapsing-remitting multiple sclerosis (RRMS).
  4. September 2009: I started my daily injections of Copaxone, a MS drug. I've been on them ever since!
  5. March 2010: MRI confirmed several things: 1. The most important thing was that the medication was working as it had prevented the formation of new lesions after the initial 3 month period it takes to work. 2. During that initial 3 month period I developed several new lesions which indicated that I had an aggressive form of MS before treatment, making it important that I continue the medication.
  6. March 2010: Started physical therapy (PT) to help with my balance and my ability to walk.
Since then, I have improved my balance, and I don't need a cane. I am not 100% secure on my feet, but I am thankful that I can do what I can for now.  It was a scary time for me and my wife. I think it took 6 months or so for the diagnosis to sink in, and it took a few years for me to come to terms with it. I am very grateful that I have had my wife stick by me through it all, and the support of my family, who I eventually told. :)


Tuesday, March 19, 2013


Yesterday I conducted a poll, and no one replied....

Here are the medications I am on:
  • Copaxone - daily injection of Copaxone (MS Drug)
  • Skelaxin - 1 pill as needed. Skelaxin is a muscle relaxer (to ease spasticity and banding symptoms)
  • Cialis (ED and bladder issues)
  • Bethanacol (Bladder)
  • Alfuzosin (Bladder)
  • Levitra (ED- as needed)
  • A lot of daily vitamins\minerals\supplements
    • Vitamin D tops the list with 10,000 IU
    • Men's daily vitamin
    • Co Q-10
    • Claritin
What are you on?


Monday, March 18, 2013

What medicine are you using?

Just a quick survey...I am on Copaxone, and it seems to be working. I will post the results in a few weeks. .

Create your free online surveys with SurveyMonkey , the world's leading questionnaire tool.

My favorite quote related to Multiple Sclerosis

So I may have been in a dark place when I found this and having balance issues, but I am also a cynical guy by nature.

Saturday, March 16, 2013

Common symptoms of Multiple Sclerosis

Today I am going to discuss the common symptoms of MS along with my personal symptoms.

Common Symptoms of MS

Symptoms of MS vary from person to person. These symptoms also very in severity, and may not be constant. They may come and go without warning or reason. They can be invisible to other people, or visible.

· Muscle stiffness
· Vision problems
· Fatigue
· Numbness or “pins & needles” in extremities
· Pain or discomfort
· Bladder issues
· Cognitive problems
· Foot drop
· Tremors
· Lack of coordination
· Lack of fine motor skills
· Loss of balance
· Cognitive problems
· Complete or partial paralysis
· Heat sensitivity

My Symptoms
Current: Hopefully the medications help me get rid of some of these symptoms
  • Sexual dysfunction - The most fun of all for a 34 year old married man who is deeply in love with his wife. It is too depressing to even discuss beyong what I just wrote.
  • Bladder issues: Increased frequency and difficulty emptying my bladder
  • Fatigue: fatigue that isn’t due to lack of sleep, my entire body shuts down
  • Cognitive problems: forgetful and slow processing information
  • Foot drop of left foot, looks like I am dragging my foot at times
  • Balance issues: I walk all over the place and into things. I often stumble or fall
  • Muscle weakness: My knee or knees will give out on me at random times
  • Heat sensitivity: If I get overheated or too hot, all my symptoms get worse especially vision, fatigue, balance, and foot drop
Past: The fact that a few symptoms have subsided gives me hope that the Copaxone is working.
  • Numbness in my hands and fingers, and sometimes my legs - This one was a fun one. I kept dropping small items (pens, keys) or couldn't pick them up. I was really happy when this subsided
  • Pain: Constant pain and discomfort all over - Another fun one that has mostly subsided.
  • Muscle stiffness in legs and banding in the abdomen (MS Hug)  - This still happens randomly, primarily in the summer
  • Fine motor skills decrease: It is hard to type, hold smaller objects, tie my shoes, button my shirt - Nothing makes you feel better about yourself than having difficulty buttoning a dress shirt!


Friday, March 15, 2013

Friends will come and go!

Friends will come and go - but the real value is in the loved ones that are always there.

When I was first diagnosed in 2009, I didn't want anyone to know. Only my wife and parents knew- not even my sisters didn't know. I needed time to process everything. Maybe it was pride, or fear that people would leave me - I don't know. But a few months after my diagnosis, I did tell some of my closest friends and my immediate and extended family - but to this day (almost 4 years later) most people are not aware that I have MS.

National MS Society Blog: The MS App

I especially like the last paragraph - I am trying to be a portal with this blog, albeit anonymously (for now)

National MS Society Blog: The MS App: Michael Wentink      Blogger, A Road Less Traveled...     Growing up in the 80s, family trips to the local shopping mall usually invol...

Wheelchair Kamikaze: MS for Dummies

I just stumbled onto this post today, and it made me laugh - hopefully your find it amusing as well.

Wheelchair Kamikaze: MS for Dummies: Since I suffer from Multiple Sclerosis, I figure I should provide a brief primer on the disease. I'd like this blog be more about my exp...

Are there different types of MS?

There are 4 different types of Multiple Sclerosis. They are characterized by disease progression and it is common for a person with one type to transition to another type over the course of a lifetime.

Quick points on MS

Here are some quick facts or frequently asked questions that I put together for my family when I told them. Growing up, I had never really heard of MS, so I assumed my family wasn't really knowledgeable either. Some of this may be too basic, but I thought I would share anyways

Thursday, March 14, 2013

Mavericks G Wright joins team while battling MS

Mavericks G Wright joins team while battling MS

Inspirational - If he can withstand the rigors of the NBA, I can deal with my everyday life.

Welcome to my first blog post! (3/14/2013)

Hello everyone! I am glad you decided to visit my blog.

I decided to start this blog late last night as I was tossing and turning. I want to be able to express myself, share my frustrations and any tips that I may learn for dealing with MS.