Researchers for the first time have induced robust regeneration of nerve connections that control voluntary movement after spinal cord injury, showing the potential for new therapeutic approaches to paralysis and other motor function impairments.

[From In breakthrough, nerve connections are regenerated after spinal cord injury]

My hands are so weak that it is impossible for me to use a regular keyboard and mouse/trackpad. As a result of this weakness I have to use a switch to access the computer. A switch is small device that sends a signal when activated. There is wide range of switches to choose from, and the one I use is called a bean switch. It just needs a light touch to activate. The switch is connected to a usb device called a switch interface. A switch interface is designed to convert the signal from the switch and send it as a mouse click to the computer. Switch interface can generally emulate key press or a mouse click or a joystick. And again there is a wide range to choose from. I am currently using a switch interface called Swifty.

On the software side I use a scanning program called SwitchXS. SwitchXS is activated when I press the switch and with few presses it allows me to do anything on the computer. I am also using a predictive typing software called KeyStrokes to help with typing. This screen shot will give you an idea about how it works.

The way scanning works is: the first switch press activates SwitchXS which in turn starts scanning a panel. I then press again when the scanning line highlights the row which has the function I want to use. SwitchXS then starts scanning the row and I press again when it highlights the button for the function I want.

To a regular computer user this might sound slow and tiring but the fact is that it is not and with some clever scan panel design I can do things faster and easily. I have designed two scan panels to make my life easier. here is one for general computer use.

This is the one I use for typing.

When time to use a speech program comes, I simply need to add a text to voice software to the mix making my Mac a full-fledged AAC. And in future if my current switch does not work for me any more than all I need to do is get a different type of switch that will work!

Since last year my has gone down as well. I have lost all of the strength in my hands and only have small movement in the fingers of my left hand. I now use a switch to access the computer. I no longer have strength to cough and need to use a BiPAP to get a good sleep. But even with this severe disability I look forward to each day as I get time to enjoy with my daughter.

In short I’m able to sleep well again!

Act One. Letter Day Saint.
Rebecca was 16 years old when her mother Elizabeth died of cancer. But before she died, she wrote letters to Rebecca, to be given to her on her birthday each year for thirteen years. At first the letters were comforting, but as time went on, they had much more complicated effects. David Segal tells the story. David is a reporter for The New York Times. (14 minutes.)

[From Parent Trap | This American Life]

As much as I want to be there for her when she needs me, I really don’t want her to grow up under my virtual shadow after I am long gone. I would rather have her tread her own path and get all the happiness that she deserves along the way.

I will be getting a new addition to my wheelchair so that I can continue to drive it without my hands. As my left hand is getting weak, it’s getting hard for me to use the joystick and so the need for a new way to control it. What I will get is called a ‘Head Array’ and it will allow me to control my wheelchair by tiny head movements.

Other than these new things I am doing good. And yes, this past April I went past the 100 mile mark on my wheelchair!

In Part 2 of the study, 92 subjects were re-randomized to receive daily doses of 50 mg or 300 mg of dexpramipexole for 24 weeks. In addition to results again suggesting a dose-dependent trend in slowing the rate of disease progression as measured by the ALSFRS-R, there was also a trend toward a survival benefit in the 300 mg group compared with the 50 mg group. In an exploratory test comparing subject rankings on the basis of mortality and functional outcomes, subjects in the 300 mg group had a significantly improved outcome compared with the 50 mg group.

Knopp Neurosciences Presents Further Encouraging Trends in Its Phase 2 Study of KNS-760704 (Dexpramipexole) in ALS – Technology | Centre Daily Times – State College, PA

In the first federal-government-approved clinical trial of its kind in the U.S., patients with amyotrophic lateral sclerosis (ALS) will be treated with their own stem cells.

The aim is to hopefully slow the progress of the fatal, neurodegenerative disease.

TCA Cellular Therapy of Covington, a privately held stem-cell research and development company, has signed up the first of six participants for Phase I of the trial recently approved by the U.S. Food and Drug Administration.

2theadvocate.com | Features | Clinic to participate in stem-cell trial — Baton Rouge, LA

Cytokinetics, Incorporated (Nasdaq: CYTK) announced today that its fast skeletal muscle troponin activator, CK-2017357, has been granted orphan-drug designation by the U.S. Food and Drug Administration (FDA) for the potential treatment of amyotrophic lateral sclerosis (ALS), also commonly known as Lou Gehrig’s Disease. CK-2017357 is the lead drug candidate that has emerged from the company’s skeletal sarcomere activator program. Cytokinetics plans to initiate a Phase II Evidence of Effect clinical trial for CK-2017357 in ALS patients in the first half of 2010.
Orphan-drug designation is granted by the FDA Office of Orphan Drug Products Development to novel drugs or biologics that may treat a condition affecting less than 200,000 persons in the United States or occurs in more than 200,000 persons and for which there is no reasonable expectation that the cost of development and distribution of the drug will be recovered. The designation offers a number of potential incentives, which may include a seven-year period of U.S. marketing exclusivity from the date of marketing authorization, funding for clinical studies, study design assistance, waiver of FDA user fees, and tax credits for clinical research.

Press Releases – Cytokinetics

Isis Pharmaceuticals of Carlsbad, Calif., has begun a phase 1 clinical trial of its experimental compound ISIS-SOD1-Rx in people with familial (inherited) ALS caused by toxic SOD1 protein molecules.

“This is a watershed moment,” said R. Rodney Howell, a metabolic disease specialist and chairman of the MDA Board of Directors. “More than 30 people with familial ALS caused by mutations in the SOD1 gene soon will receive infusions of a SOD1 inhibitor directly into their central nervous systems.”

A so-called "antisense" compound, ISIS-SOD1-Rx is designed to block production of the toxic SOD1 (superoxide dismutase 1) protein in people who have developed ALS because of mutations in the SOD1 gene. Antisense compounds are pieces of genetic information that keep other genetic information from being processed.

SOD1 mutations account for approximately 1 percent to 3 percent of all cases of ALS (amyotrophic lateral sclerosis), and about 20 percent of all familial ALS cases.

The SOD1 form of ALS is perhaps the best-understood form of the disease and almost the only form used in animal-based ALS studies

ALS SOD1 Trial: A ‘Watershed Moment’ | Quest Magazine Online

The other day I was browsing through old pictures of mine and came across this one. It was taken in December of 2007, at that time I was walking with the help of a cane. This picture made me wish if I could for one more time hold my daughter’s hand and take a stroll with her. One thing I’ve learned from my illness is to enjoy each day of my life as I never know what tomorrow has in stock for me. Same goes for my readers as well, do the thing you always wanted to, make that trip you always wanted to or raft through waters of Colorado or take that skiing trip to Swiss Alps and the most important make sure you tell your loved ones how much you love them because one thing you can’t predict is tomorrow.

For the first time in the United States, stem cells have been directly injected into the spinal cord of a patient, researchers announced Thursday.

Doctors injected stem cells from 8-week-old fetal tissue into the spine of a man in his early 60s who has advanced ALS, or amyotrophic lateral sclerosis. It was part of a clinical trial designed to determine whether it is safe to inject stem cells into the spinal cord and whether the cells themselves are safe.

First U.S. stem cells transplanted into spinal cord – CNN.com

1/22 Update: After I woke up this morning, I noticed that my neck muscles are stiff and there is slight pain in them. I hope it gets better soon.

1/24 Update: All is well.

Under the scientific guidance of cellular biologist, Jose J. Minguell, Ph.D., the adult stem cells will be taken from the patient’s bone marrow in a simple outpatient procedure. The cells will then be processed in TCA-CT’s GMP laboratory and administered to the patient by spinal tap in one of TCA-CT’s facilities.

FDA Gives TCA Cellular Therapy Green Light to Proceed with First ALS Adult Stem Cell Trial Using Patient’s Own Stem Cells | Press Releases @ Your Story

Scientists at the Gladstone Institute of Neurological Disease (GIND) have identified the reason a key protein plays a major role in two neurodegenerative diseases. In the current edition of the Journal of Neuroscience, researchers in the laboratory of GIND Associate Director Steven Finkbeiner, MD, PhD have found how the protein TDP-43 may cause the neurodegeneration associated with amyotrophic lateral sclerosis (ALS) and frontotemporal lobar degeneration with ubiquitin-positive inclusion bodies (FTLDu). TDP-43, is the major component of protein aggregates in patients with these diseases. Mutations in the TDP-43 gene are also associated with familial forms of ALS and FTLDu.

Gladstone scientists identify role of key protein in ALS and frontotemporal dementia

Since 2010 is just around the corner, I wish all my readers a very happy new year 2010.