My first Bonsai

TYSABRI's return a matter of when, not if

Elan's CEO said that Tysabri stops the progression of MS, while other MS drugs only slow its progression; this is a "critical" piece of information Elan will raise when it formally meets with the FDA.
He said Biogen and Elan "may never have a pure scientific argument" as to what caused the PML based only on three cases. "That isn't our goal and the FDA knows that," he said. "It's a question of risk assessment."
Martin also said Biogen is continuing to manufacture Tysabri, partly due to its "extraordinary" take-up when it was on the market, and so the companies are braced for its return to market.

Frankly Speaking, Its All About Assumptions, Presumptions and Perspective

As I stumble through my relationship with MS my perspective changes!

I ask myself, "But what if you couldn't ...?" much more often now.

When I look at an intersection I notice whether there are ramps or curbs.

I catch myself noticing whether the island dividing a street has a wheelchair ramp in it to allow persons in wheelchairs to cross.

I notice how far it is from the pedestrian crosswalk button to the wheelchair ramp and ask why the button is not adjacent to the ramp. But for some reason the question, "What if I couldn't press the button?" Never crosses my mind.

I look to see if wheeling down a ramp puts you out in the street or out into a crosswalk.

I've noticed the roadbed several inches lower than the curb when the street was being re-surfaced. And I've watched as an individual in a motorized wheelchair crossed the street only to encounter that step up!

I notice the disabled parking placards hanging in vehicles. Are they expired?

I notice the people parking in those spots who shouldn't. Damn, I wish I were that important!

I've witnessed a disabled person squeezing a second car into a disabled van accessable spot because she felt entitled.

I've seen wheelchair ramps at curbs that were lined with barricades to keep autos from driving up onto the sidewalk. Think about it!

Yet, I still find myself thinking like an able-bodied man. That perception just won't go away! It's hard to remember that I need to step first with the left foot and always pivot on the left foot.

Actually, its not that it's hard to remember. What's hard is forgetting that I used to not have to think about it at all.

WHEN MY LIFE SUDDENLY CHANGED by Gwen Ollis

Last of June 1971 I woke up and could only see items with peripheral vision in my left eye. I made an appointment with the eye doctor, he put me on prednisone. After a couple of weeks when wasn't better, referred to a neurologist in Tulsa. This doctor ran some tests because I had taken a bad fall down some steps while on vacation the first part of June and landed on my head. In about 6 weeks, sight was back to normal except for color brightness. Diagnosis optic neuritis.
Over the next nine years and a move to Nashville, things seemed to be pretty normal as I knew it. Can look back now and see things may have been caused from MS.
Spring of 1980 problem with slight numbness in my right lower leg for 3 to 4 days, but numbness came back worse a month later and leg was smaller than left leg. Was sent to Vanderbilt Hospital for a battery of tests after several days and a spinal tap, was told appeared to be Multiple Sclerosis.
I didn't know much about MS. My neighbor while growing up had MS. She would honk and I would go over and help her get in the house when her mom wasn't home. She was a lovely person, good spirit and she never talked about her MS. All I knew was she had MS and had to have assistance walking and mechanical things put on her car to drive.
June 11, 1996 I could hardly drive home after attending birth of my granddaughter. Doc was on vacation so found neurologist to see me. Since I had never had a MRI, he sent me to have one done. MRI showed (benign) Meningioma tumor on brain. He sent me to St Louis and I had surgery to remove it. While there, a MS specialist looked at tests and then checked me out.
In 6 weeks, I was back to work for half days and able to write again.
The Lord gave me my life verse just before the MS diagnosis. Verse is I Thess. 5:18, "In everything give thanks for this is the will of God in Christ Jesus concerning you". Don't know why I have this thorn but do know "He" can get me through the bad times.
Since the diagnosis, I have had several episodes with limbs. Each one lasted about 6 weeks then limb/limbs would return back to use except a little more loss of strength.
My husband cannot feel what I do but has been such a blessing and encouragement. He can look at me now and know it is time for me to rap things up and call it a day. We own a pop and mom business which gets pretty busy and stressful at times.

Just a little editorial note from Frank:

Gwen happens to be my half-sister and we are both afflicted with Multiple Sclerosis! Coincidence?

Tysabri, by Frank

In November 2004 the Food and Drug Administration approved use of Tysabri to fight the effects of relapsing/remitting Multiple Sclerosis. Incidentally, I had an appointment with my Neurologist on December 1. It is my opinion that I had not been responding satisfactorily to the Interferon Beta injections that were my primary treatment regiment until that time. I was given a prescription for the infusion of Tysabri every 28 days and began the process of trying to gain insurance approval to begin treatment.

After a month of failed efforts to move the process along I sought the aid of an Oncologist that I had used in a previous infusion therapy. It worked! On February 3 I underwent the first infusion with this drug.

My appointment for the second infusion is scheduled for March 3. It won't happen! The FDA, Elan Corp. And Biogen have pulled the drug off the market, stopped distribution and suspended ongoing clinical trials. Two members of the clinical study have been diagnosed with PML. In one case the patient died and it's my interpretation of the information available that the second individual still suffers from the effects of the disease.

PML is a progressive degeneration of the brain for which there is no known treatment. Just what I want! Another disease that results in progressive degeneration of the brain! Early symptoms seem to mimic many Multiple Sclerosis symptoms (that's my analysis, not a medical professional's) and the diagnostic tools used to identify it are MRI and Lumbar Puncture.

I think it’s too early to react to this! Were there other treatments that provoked this response of the immune system? What is the long term risk associated with this product and what are the long term benefits it offers?

By the way, if you are interested, I have a pretty good explanation of PML I can attach to an email for you. Just add a comment to this Blog requesting it and make sure I’ve got your email address.

The search for a cure continues!

Anita's Self-Advocacy

Anita left her residence in her new high-tech motorized wheelchair. She traveled to a nearby intersection. Pressed the “Push-to-walk” button and waited on the light to turn green. It did and she started to cross the street. As she was crossing, an oncoming vehicle negotiated a left-hand turn that intersected her path striking her wheelchair. The good news is that she was not physically injured!

Now the bad news. Her new $22000 wheelchair was totaled. No witnesses came forward so it was difficult if not impossible to ascertain who was at fault. The police did not cite either party. Barring a protracted lawsuit the matter was closed. Anita’s source of mobility and independence was now a heap of broken useless parts for which no one wanted to take responsibility.

Anita could have withdrawn to her residence. Depression could have set in. This situation could have simply slipped through the cracks. Out of sight, out of mind.

But she took it on herself to contact the local newspaper, “The Orange County Register”. The deaths of 3 people using wheelchairs in the past 2½ months prompted the paper to publish an article highlighting the dangers wheelchair users confront. The article appeared in the February 12 issue of the paper.

Since the article’s publication; her wheelchair has been replaced, awareness to this issue by the community in general has been heightened, and attention to this matter within the Multiple Sclerosis community has been feverish and shows no sign of ebbing. The first step in solving a problem is recognizing that a problem exists.

So thank you Anita! By demonstrating powerful self-advocacy not only have you won a personal victory; you’ve brought attention to the issues of:
1. Personal safety
2. Protecting ourselves from the unexpected loss of our mobility aids

Kelly and I at the place of refuge

How 'bout that all terrain wheelchair?

By Betty; What Do I Do Now

I was sitting in my recliner chair holding my daughter, who was 6 months old at the time. It was a nice day in Sarasota, Florida, as I had the windows open and you could hear the birds singing and children playing outside.

I started to notice something strange with my body that day. I had felt numbness with both of my legs but it had continued up to the middle of my back. I also noticed numbness on the side of face and across my forehead. This was very weird!

I had a house warming party to host that night so I couldn’t think too much more about it. I did notice that when I walked on the cold floor, barefoot, that my feet would hurt…A LOT! This was definitely not normal! I told Sam I had to see the doctor to check this out.

We had our party that night and we did talk to our friends about what was going on but we made light of it. After all, how can you explain mystery symptoms when there is no reason for them?

I went to my general doctor and went through the whole story again with him, where I was and what I did. He didn’t have a clue as to what was going on. The one good thing he did do was referring me to another doctor.

I was not really worrying at this point that I had something that couldn’t be fixed! Off I went to the new doctor. He did his thing and ran all kinds of tests in his office. I do remember one test he did that I thought was very strange. I was sitting on his table and he was moving my big toe up and down. I had my eyes closed and he kept asking me to tell him when he had moved my toe up or down. Well, I never felt him move my toe up or down. I had failed his test…he had been moving my toe!

Sam had told me later, he really didn’t move it much and that was why I couldn’t feel it but I was to learn the real reason very soon. The doctor wanted me to check into the hospital to have further testing done. I had 3 children by then so we had to make arrangements for them as Sam had a job too. Things were squared away and I went into the hospital.

I had the usually battery of tests for the time, a spinal tap, blood tests, a cat scan. After all was done I got my final report. The doctor came into my room and told me I had MS. I just looked at him and said OK. Nothing else was said. The doctor left and I reached over and picked up the phone and called Sam. I told him on the phone what the doctor had told me -- I had MS. Sam was silent. I also told him I could go home the next day.

It didn’t sink in for me until a week later, after I was home. What do I do now?

By Frank; In the beginning; a new lifestyle

It all started 20 yrs ago. First my 20/20 vision deteriorated suddenly. My depth perception was diminished and I developed color blindness. There was no explanation. The CAT scan found no brain tumor and there was no noticable reason the doctors could pinpoint. Several months later my wife recalled a bout of Shingles I had had earlier. The doctor deduced that that was the cause. Since then other doctors have speculated that the Shingles were the trip-wire that spawned the MS. Who knows?

I went on with life, the color blindnes and depth perception problems went away. The vision almost returned to normal. But, as time passed other seemingly minor issues began to emerge. First after 10 years or so I began to notice that when I wrote certain numbers and letters the pencil would jump slightly out of control. The problem effected 3s and 7s first. I remember being frustrated by the spasm, for lack of a better word, that always seemed to occur when I wrote those numbers.

At the time Corinne, my wife, and I played golf twice a week. I began to notice that walking the course was a struggle. I seemed to have to sit and rest between holes often. I mentioned it to the doctor during one of my annual physicals. He suggested that I was dehydrated and needed to drink more fluids while on the golfcourse. Jokingly we disussed whether increasing the beer intake during the round would help.

Others began to notice a limp in my gate. I didn't notice it or feel it. If I didn't notice or feel it, how could it be something of concern?

At another annual physical the doctor suggested I visit a Neurologist for further investigation. Why not? I felt fine, there was nothing wrong with me. Let him check me over, give me the green light and off I'd go.

The Neurologist took a history, did a physical exam and asked me to walk down the hall. OK, no big deal. Dr. Shokrae then made the following observations. First, I walked with a rather wide stance. Second, he noticed the limp. Then he said he wanted to run some tests to rule out certain diseases. Ok, no big deal.

All I had to endure was an MRI, a lumbar puncture and a visual acuity test. Apart from the headaches associated with the lumbar punture it was a painless experience.

Then came the meeting with Dr. Shokrae to review the outcome of the tests. As we sat in his 7th floor office he began to point out the lesions on and in the brain. Afterword my wife revealed that she was concerned about what the prognosis was. I was in shock. I was confused. And I was at least a bit scared. At that point what I knew about MS was limited. I was sure it wasn't good but I didn't know what to expect.

Since that day lots of things have changed. I'm retired now. I get up every morning and make my wife's breakfast. Do the laundry. Run whatever errands need to be run through the week. Granted it is not as fullfilling as managing a field service organization, but it is a purpose! And I'm thankful to have the soulmate that I have.

I accept the lifestyle changes that come with MS. I accept the fact that tomorrow may be different, that I might not be able to perform as well physically as I did yesterday. That I might need a little help along the way.

I now know that MS is what we all, regardless of our position in life, fear the most- CHANGE!