Nothing ever seems to be easy

It has been two months since I was diagnosed with a blood clot in my calf. Since then, the blood thinning process has not been without problems. When I read it could be difficult, I never thought it meant experiencing large swings and constant visits to the doctor for INR testing.

The first couple of weeks my blood would not thin (0.8 – 1.5). With new instructions (no broccoli and reduce the number of other items with vitamin K) and an increase in the medication, my blood finally thinned to 2.2. But, it worked too well and the next test showed 3.5. Okay, new instructions – reduce the medication and have a couple of salads. When we checked again, it was now too low (1.5 again). Okay, maintain the dosage, but stop eating all salads, do not drink green tea, and, stop taking my multi-vitamin and CoQ10. When we checked this Friday, I was in the zone again (2.3). The latest instructions are to keep doing what I am doing (and not doing) and come back in two weeks.

For a person that sees his doctor once a year for his annual physical, I have had eight visits so far in two months. Every time I step into the lobby, there are six-to-twelve people waiting. Some are coughing (oh-oh), some look in pain (probably nothing to worry about), and some look healthy (whew).

Okay, let’s review …

A.  The good news:

• I have not experienced any pain or swelling in the calf since week two.
• I am two months into a six month regiment.
• I increased my calf exercise routines.
• I don’t sit very long without getting up and moving around.
• I haven’t bitten my tongue recently.

B.  The bad news:

• My blood won’t stabilize within the recommended level.
• These doctor’s office visits for INR testing are getting old fast.
• I miss my daily luncheon salad and my green tea.
• I still have four more months left (at least I hope that is all).

C.  Lesson learned: Keep moving!

Bionic Suit Helps Paralyzed Patients Walk Again

This is another article from ABC News concerning the Ekso Bionic Suit.  I have written about the Ekso before (April 22 and September 12).  The reason I continue to write about these new technologies in personal mobility is the advancements that are being made at a significant rate.  None of these robotic/bionic assists are perfect yet, but they are getting closer and prices will come down until these assists become affordable.

One of the key features that I have not seen before is that the weight of the actual Bionic Suit is transferred to the ground so the user doesn’t have to carry the additional weight.

Yes, we aren’t there yet, but we are getting a lot closer.  Something like this will make living with Kennedy's Disease a little easier until there is a treatment or cure.

_____________________________

Patients paralyzed by spinal cord injuries are taking their precious first steps at a Southern California hospital with the help of a battery-powered bionic suit that was first designed to help soldiers carry heavy loads.
 
“Mentally it’s a wonderful feeling to be upright and moving,” said Aaron Bloom, who was paralyzed two years ago in an accident.
 
The 27-year-old was told he would never walk again, but with each step in the Ekso Bionic Suit  at Huntington Memorial Hospital, he’s defying the odds.
 
“Right now, I don’t really need anybody holding me. I can lift my hands up and put a little weight on these crutches and feel pretty comfortable,” he said.
 
The suit, which costs $150,000, is strapped on over a person’s clothes. Foot plate sensors help locate the center of gravity so the person wearing the suit can maintain their balance as they take each step. A computer is worn on the back to help drive the hip and knee motors.
 
The entire suit weighs 45 pounds, but the load is transferred to the ground so the patient does not bear the weight, according to Ekso Bionics, the company behind the breakthrough technology.
 
It took Bloom weeks of practice to feel comfortable using the suit. He knows it’s not a perfect solution, but for now, it is hope.
 
“I have no doubt in my lifetime that there will be some sort of solution for spinal cord injuries,” he said. “I firmly believe that I will be able to walk in the future. It’s just a matter of time.”

Happy Holidays

It is a magical time of year filled with the spirit of Christmas.



Thank you for reading my blog.  Thank you for your comments and suggestions.

It is my hope that I have more time next year for writing articles. I want to publish 2-3 articles a week.

I wish you all …
Happy Holidays
and, a safe, healthy and happy 2013

A Holiday Message of Hope

As you know, I am so appreciative of all the work our researchers do to try to find a treatment for Kennedy's Disease.  During my tenure as president of the KDA, I have had the honor of meeting several of these researchers.  These dedicated individuals continue to provide hope that someday there will be a treatment.

Isabella Palazzolo is one of these researchers.  Her message below needs to be shared with all of us living with Kennedy's Disease, as well as other motor-neuron diseases. 
_________________________

Dear Bruce and Ed, and every member of the Kennedy’s Disease Association,

I want to use this email as a means to thank Bruce for his help for my green card application, and wish the best of luck to Ed in this new role. I am sure you will be excellent.

Once again, I would like to send a message of encouragement to each and all of you: as technology and resources become available for scientific research, the time is exciting and full of new discoveries and improvements. In the recent years, rare diseases like Kennedy's disease are investigated not only by academic labs but also by pharmaceutical companies, and this extend the number of scientists that you can count on your team.

I recently joined a pharmaceutical company, working on clinical trial and marketing application of new drugs for Multiple Sclerosis, ALS and, hopefully soon, other diseases of the motorneuron. I speak for my own experience: the patients associations, the interaction with patients, is where myself and most of my colleague find inspiration and motivation everyday.

Nothing like meeting the people at the Kennedy's Disease Association has driven my scientific career, and I would like to send this message of encouragement to all of you: your enthusiasm and your energy is what made me thrive for my PhD. Your interest in our small progresses, and your expectation for a drug yet to come is inspirational in each of my new challenges.

Wish you all happy holidays and merry Christmas,

Isabella
Post doctoral Fellow in Regulatory Affairs – CMC and Manufacturing Sciences
Biogen IDEC

We’ll never understand …

My wife and I spent several hours last night watching the Sandy Hook Elementary School tragedy. This morning we started watching the news again still trying to absorb what has happened.

We cannot imagine what the parents, family and friends went through, are going through today, and will continue to go through for years to come. And, we thank God that the teachers were able to respond in an intelligent and calm manner to protect and then evacuate their students.

Of course, we all ask ‘why did this happen’ and ‘how could this happen’? And, even when we have the answers we will never really understand. Our conscious mind just cannot digest something as horrible as this.

As a nation, and across the world, our hearts reach out to this community. We pray for them, no matter what our beliefs.

At a time like this I think of John Lennon’s song, ‘Imagine’.

“… Imagine all the people living life in peace
You may say I'm a dreamer, but I'm not the only one
I hope some day you'll join us and the world will be as one”

The Human Body in 3D

I need to recommend a website that many of you will find interesting. To me, the BioDigital Human website is fascinating. It allows you to explore the human body in 3-D as well as isolate or dissect certain organs, systems and parts of the body.
 


Some of the many features that this website offers are:

• Interactive Exploration: Explore the virtual body in interactive 3D: search, zoom, and rotate objects
• Customized Views: Dissect the body and produce custom cross-sections

• Dynamic Animations: View dynamic animations of health conditions and disease progression

• Annotated Screenshots: Create, save, and share annotated screenshots

I played with it for a few minutes the other day and then went back again yesterday to play some more. Being able to isolate certain parts of the body or see how certain health conditions impact parts of the body is fascinating. Being able to isolate certain parts of the body and organs is interesting. Having a description on the same page view is helpful. Having a window pop up to provide a more detailed explanation further helps explain the organ or system. Also, being able to go back and forth from the standard view to the transparency mode and to the isolation mode helps simplify and focus the viewing of specific organs and systems.

There are dozens of health conditions to explore (but no Kennedy’s Disease yet).

Yes, you have to register the first time and log in every time you use it. And, yes, they would like you to upgrade to the more powerful version (30 day free trial). I don’t see where they tell us what the premium version costs, however.

Anyway, check it out if it sounds interesting. I will visit this site many times in the future especially when I have questions on how something works, where it is and what it looks like.

What wealth cannot buy

I wrote this article in the ‘spirit that is Christmas'.

My wife and I were watching TV today. The program showed a celebrity taking his two daughters shopping in New York. Whatever the children wanted, their father bought. During the commercial, my wife asked, “When you were a child, did you ever wish to be rich?”

After considering her question for a few minutes, I answered, “Not that I can remember.” I then went on to explain that we never really thought about being lower middleclass. We had food on the table every day, clothes to wear summer and winter, and Christmas was always special because of our family traditions.

We discussed this topic for several minutes. Some of the reasons we came up with for not really considering what it would be like to have wealthy parents were:

• All of our friends’ parents were similar in regards to occupations and income.
• Family values and traditions were strong including daily family dinners, discussion times, family celebrations, and spiritual upbringing,
• Strong friendships (both our parent’s friends and our friends).
• And, resource sharing among friends.

There were several other things that made life special for each of us and not always ‘wanting’, but we settled in on two that were the most important.

1. Resource sharing made our lives pretty special.

• A friend had a BB gun, we all were able to use it.
• When another friend’s parents had a color television, we all spent time at his house watching our favorite programs.
• Another friend’s parents had a house on a lake and a ski boat. We were always able to spend a little time each summer with them on the lake.
• Our school (less than a block away) had basketball courts, a large grassed in area (that became our football field), and a baseball backstop and diamond. We had a lot of pickup games at the school.
• A friend bought a car when he turned 15. We were all able to ride around town and to school by just coming up with a little gas money (usually a quarter because it would buy a gallon of gas). The only issue we ever had was who remembered to call out, “I’ve got shotgun” before anyone else.
• My dad was part owner of a bus lines and he supplied the neighborhood kids with truck tire inner-tubes.  They were great for sliding down hills in the winter and floating on the lake in the summer.

2. Yet, my wife and I both agreed that family values and traditions were probably the strongest reasons.

• Sitting down every evening as a family to eat dinner was important.
• Being able to discuss issues, opportunities and plans always helped.
• Family and friends getting together for birthdays, holidays, anniversaries, etc. always was special.
• Celebrating Thanksgiving, Easter and Christmas with family and friends. These were always the special moments we remembered because these occasions brought great joy.
• Our church brought us all together at least once a week. It was a moment to share common values and beliefs.

We both agreed that our lives were much simpler because possessions were less important and family, friends, beliefs and traditions were the foundation of what made us happy.