The Latest Update

I's been a while since you've seen a post... which I credit my work to taking up the time and trying to catch up. Last week I snapped my fingers(wasn't able to do), and the week before I was able to open a pop can. It might not seem like a big deal, but it's small steps in the right direction. The numbness has decreased quite a bit in my legs, while the hands remain the same. I'm working with the O.T. (Occupational Therapist), and the excercising techniques seem to be helping. I think the improvement is part nerve repair, part my body is adjusting/compensating(just getting used to it). Either way, this is still frustrating, and it will be a long journey. I might try to pick up my guitar this weeekend!

Life's daily challenges

Today marked the first day that I didn't drop the bar of soap in the shower. Whooray! Don't get me wrong, my hands have not improved, but I think that the increase in strength of my hands has allowed me to do a little more. I also believe that dealing with this on a day-to-day basis will naturally cause me to get used to it. Challenges still rear their head when I have to brush my teeth, button buttons, shave, put belts on, socks and shoes etc. I am forcing my mindset to treat every day just as nothing is different, in other words trying to do everything that I normally would do with my hands. The down side is that I am dropping more things, and increasing my frustration because I simply am not able to do some tasks. Fortunately, my wife Pam has been there to help me if I ask.

Thank you again all of you for your support and prayers. My neurologist visit yesterday was disheartening. Although this is considered in his mind to be a 'mild' case of transverse myelitis, and that he says I am 'blessed' to not have this worse, it obviously is still a big issue to me. Either I will get better progressively, or I will just learn to deal with it, thus making it seem that my condition has got better. 'Just get used to it, Jeff' was the phrase that stuck in my mind. I didn't like the fact that he said that there may be permanent damage, and my current status may never improve. Also the fact that the neurologist told me that the lesions in my neck were overlooked by the radiologist initially didn't make me happy. I guess it all depends on what is between my ears and how I handle this latest challenge in my life.

I tell people that my hands feel like I've been writing my lawnmower for two hours in the vibration has hurt my nerve endings in my hands. That's kind of how it feels, or if your arm has fallen asleep, the numbness is similar.

We went to a prayer vigil last night for a five year old that has leukemia and the outcome does not look good for him. The family is very strong but I'm sure there will be many challenges in the road ahead of them. I guess perspectives slap you in the face every day in regards to what we should be thankful for and have gratitude towards.

It could be worse...

Occupatioanl Therapy and Neurology Visits

Just to give you a update...

I had the good news is my occupational therapy and session went well and my grip strength went from 65 pounds to 100 pounds since last week. Balance is still an issue, and I will be working on the dexterity for my hands.

My local neurologist had less good news, stating that the damage in my hands may or may not come back completely, partially, or not at all. Recovery time could be a year or so.

Although my battle with this disease is considered to be "mild", and I am a "lucky & blessed", it sure doesn't feel like that.

More later...

U. of M. Trip

Hello everyone,
Yesterday was a long day with a trip to the University of Michigan hospital.

I met with two doctors, had a half hour review and exam, followed up with a one hour review of my previous MRI’s done at the hospital, and many answers to our questions that we have.

I had more blood drawn, to rule out nmo (Devic’s Disease, or Neuromyelitis Optica) , and we’ll be meeting with them again in six months with an additional brain MRI and follow up.

Basically, they agreed that I have Idiopathic (which means they can’t identify how this started) Transverse Myelitis, and the treatment that I have done was exactly what they would have prescribed, and it now is just a matter of ‘hanging’ in there as my condition will improve. This condition will take a long time, and will be measured in weeks and months instead of days. The odds of my reoccurrence of this disease are about 10% to 17%. If it does come back, there is a good chance that it could be the beginning of multiple sclerosis or nmo.

I am finally off all of the steroid treatments and will only be taking vitamin B12 as a supplement at this time.

As far as my hands and rest of my body goes, my hands are still not improving but my body is improving slightly every day. I am now driving, but still am very frustrated with my loss of senses in my hands. Occupational therapy will hopefully help, and I will be meeting twice a week to help improve my strength, balance, and sensory deprivation.

I received a new software (a voice recognition software called dragon naturally speaking), and hopefully it will be more accurate than the Microsoft software that I am currently using.

What is Devic's Syndrome?

Although this isn't what I have (as of now), this is just a description of the NMO Disease (also called Devic's Syndrome) Devic's syndrome is a rare autoimmune central nervous system disorder characterized by transverse myelitis (in which the fatty, protective covering of the spinal cord breaks down) and optic neuritis (in which inflammation of the optic nerve causes loss of vision and eye pain).]. It is considered a special form of multiple sclerosis (MS) with a severe and rapid course. The disorder affects the optic nerve and the nerves in the spinal cord. In Devic's syndrome, the fatty sheath that protects these nerves is lost. Individuals may experience vision impairment and various degrees of paralysis, as well as incontinence. The disorder is closely linked with MS and lupus, but usually appears before any symptoms of MS are noted. If an isolated disease episode affecting the spinal cord and optic nerve occurs after an infection or common cold, it is considered a post-infectious acute demyelinated encephalomyelitis (ADE) rather than Devic's syndrome.

Going to U of M on Monday

Hello,
This weekend marks the end of my Steriod treatment... thank goodness. Pam and I will be headed for U of M to meet for a consult... we'll see what happens. Check back here for the update!

Initial Visit with Occupational Therapist

My first initial visit was depressing... Or you could call it a rude awakening. I have only a grip strenth of 65 pounds in my hands, which does not even register on the chart of percentiles. My goal is to next week be at least 10% what a normal 41 year old male should have ( 130 lbs.) grip strength and I have only about 10 lbs. To 13 lbs. pinch strength between my thumb and fingers, which should be in the 30 lb range.

I have many exercises and techniques to work on and I’ll be seeing the therapist twice weekly for how long... I don’t know.

Exercises include balance techniques, strength increasers and sensory techniques. I haven’t picked up my guitar in weeks but she suggested that I might want to do that because my brain is used to doing that exercise with my fingers, but I’m almost scared to. Talk about frustrating!

Updates from 8-11-07 to 8-16-07

My doc referred me to the U. of M., for the specialists to examine me... we'll be making a road trip soon!

8/11/07-Just waiting to hear on a date...
Not much change.
Because of my inability to type well, I am trying a speech recognition software on my computer.The software program requires training. It will recognize my voice, and speaking is easier than typing at this point. I hope it works and it will allow me to work even more efficiently than I had before.

8-12-07-This morning is definitely better (10-15%); the swelling (from taking steroids) in my feet has not been as bad and I am slowly but surely retaining some of my senses in my feet. Although balance is still sometimes an issue, stretching my legs has helped improved my gate. My hands are still not doing well, but time will tell. My core area hasn't changed.
8/13/07- Last night I drove my truck for the first time in fifteen days. I’m still waiting to hear if my health insurance company will approve my trip to the university of Michigan. Hopefully, I will be able to still get in this week sometime.
8/16/07- Well, I finally got word from the U of M that I will go this Monday for a consult. I also called John's Hopkins, but no response yet.
No improvement in my hands, but there is sllloooowww improvement in my legs... I drove my truck this week and was able to drive myself into work this week and am trying to catch up on several projects. Thank you tto all that have given me support, prayers and encouragement!
I'm working on a blog for more communicating between you all!
I'm tapering down on the steroids, and almost through with them. :)

Here are some pdf's with more details on T.M.:

visit my website for pdf's offering more details: http://jefflund.com/sitemap.aspx

What is Transverse Myelitis?

Transverse myelitis is a neurological disorder of the spine caused by inflammation across the spinal cord. It is sometimes associated with the term myelopathy, which refers to any disorder of the spinal cord. However, transverse myelitis is a more specific term for inflammation (myelitis) across the width of the spinal cord (transverse) that results in changed function below this level while function remains normal above. Symptoms are related to movement and sensory functions. This disorder occurs in both adults and children, and typically begins with a rather rapid development of symptoms over the course of several hours, days, or weeks. Symptoms may include lower back pain, weakness in the legs and arms, sensory disturbance, spasms leading to gradual paralysis, and bowel or bladder disfunction
In most cases, this is a disorder that occurs on a single occasion, although a small number of individuals may experience recurrence. The initial occurrence may be followed, over a period of several weeks or months, by a period of recovery, although this does not happen in all cases. There is considerable variability in the degree of recovery achieved. Transverse myelitis is sometimes associated with other diseases, including systemic autoimmune diseases like systemic lupus erythematosis and sarcoidosis. It may be occur following viral or bacterial infections, especially those associated with a rash, spinal cord injuries, or immune reactions.

Welcome to my Transverse Myelitis blog!