Robert

- update -

We are thrilled to say Robert has completed his treatment at Northwestern and just returned home.

* PLEASE CLICK HERE TO GO DIRECTLY TO ROBERT'S BLOG *

Hi I’m Robert,

I am a Surfer, Diver, Songwriter, Musician and lover of life and I have what is called CIPD or Chronic Inflammatory Demyelinating Polyneuropathy. It is a rare and insidious disease that causes my immune system to now incorrectly and relentlessly attack my peripheral nervous system (arms & legs) 24hrs a day, 7 days a week. The majority of my treatments for the last 13 months have been what is called Plasmapheresis. This is a process that takes all of the blood out of my body at 100% to 150% volume and spins it through a centrifuge at 2700 RPM separating my plasma that holds bad antibodies that attack the Myelin Sheath (coating around the nerves) and replaces it with clean plasma to stop the attack for a few days as they just build up again. This also strips good antibodies, vitamins, minerals, hormones, cholesterol and everything else that is important to good health. I have had over 100 of these depleting treatments to counter the antibodies and it is like threading a needle to find a day of mobility. I have also had IVIG (Intravenous immunoglobulin) treatments and high dose Prednisone and am now in line for a Stem Cell Transplant at Northwestern Memorial in Chicago.

How I got here:

This item is not a mystery and has been confirmed by some very intelligent Neurologist. I went in for a physical feeling fine and was told like so many millions of people that my Cholesterol was on the high side and I should start Zocor at 10mg December 15^th 2010 and did so for a period of 8 days. I was also told that I might feel some muscle cramps leading me to believe that this is a expected side effect, it is not! After having muscle cramps starting the first dose and on about day 6 I went surfing and I discovered I was in big waves with little strength. After waiting 2 hours for the tide to recede from the rocks I got out exhausted and went home. The next day my body became like lead and I started losing use of my left arm and my legs began to tremble, as each day passed my body became heaver and heaver. On January 3^rd I entered an urgent care facility and was told I had a Statin Induced Myopathy and was later confirmed by a muscle biopsy done at UCLA. After no recovery, in a rehab facility and paralyzed from the shoulders down it was discovered that the Zocor had triggered what is called Guillian- Barre’ Syndrome (GBS) and that was my precursor to the CIDP I suffer from now. I will be supplying documentation as I have discovered GBS has happened to many people after taking a Statin, one problem is being the biggest selling drug class in the world few doctors want to expose the true uselessness of the drug let alone any side effects.

I will be posting supporting documentation for others to read up on including FDA reports and privately funded reports.

How you can help:

The good news! Last year my insurance company (Anthem Blue Cross) paid out almost $500,000 in medical bills for treatments and 7 hospital stays, the bad news is I have not been able to work and I am asking for any kind of financial help to cover personal daily care (Not Covered) while I am in Chicago and recovering back home. This would include shopping, cooking, getting me from out patient 4 blocks away in winter to the hospital and pushing me in a wheelchair or spending the night as we are not supposed to be alone in this program as we are huge fall risk. I estimate the cost of this to be around $100 to $250 a day depending on needs and any donation of $5.00 to $5,000 would make a huge difference. I also do incur medical bills that aren’t always approved by the insurance system if they go out of network so donations will also help with that. I will keep an updated blog sometimes with help. You may also wish to purchase some of my music online as I am also a songwriter. These may include studio or just home recordings if you wish to trade that way as I’d love to share that part of me.