All posts by Dave

RIP PRINCE – YOU WILL BE MISSED

Jimmy Fallon Late Night 13.03.01 – This was one of the most amazing 2 song sets (Screwdriver & Bambi) that Prince / 3rdEyeGirl did. ¬†Bambi is featured here…

Besides the Super Bowl halftime show, this Prince performance on Jimmy Fallon truly showed his talent and stage presence.  What more can I say but watch and listen.  RIP PRINCE РYou will be missed!PRINCE

Tears of Joy from the Alter-G

I got to walk SAFELY without a cane today for 10 minutes on the Alter-G treadmill made with space age technology from NASA.

I can’t remember the last time i walked 10 minutes straight without wobbling or falling. ¬†Maybe 2010 shortly after my MS diagnosis in 2008? ¬†MS¬†makes exercise / elevating the heart rate a difficult task for many of the 2.5 million people fighting the chronic illness having symptoms that are as unique as a snowflake or fingerprint.

What is the Alter-G you say?  First a little history.

When Neil Armstrong landed on the moon in July of 1969 (my birthday and for whom I was given my middle name), he and Buzz Aldrin¬†got to experience the Moon’s extremely low gravity of ~16% as compared to Earth. ¬†The Alter-G treadmill allows the user to reduce gravity‚Äôs impact by selecting weight between 20% (only ~4% more than the Moon) and 100% of your body weight in¬†1% increments. ¬†This is a true game changer for many people and reasons. ¬†For those of us with MS it is very important to KEEP MOVING!

I urge you to investigate and try this amazing piece of equipment to:

  • Rehabilitate lower extremity injuries with less pain and less impact
  • Improve mobility, strength and safety for those with neurological conditions
  • Provide a safe way to lose weight and exercise more intensively while unweighted
  • Train without pain and reduce the stress to joints and muscles
  • Recover effectively and with less pain after training or competition

 

 

Gravity Sux and so does MS

I cant remember the last time I walked normally and without a cane. I don’t remember what it was like to workout for 45 minutes or break a good sweat. ¬†It seems my mission in life is to keep on walking and moving as best i can without falling.
Falling and Gravity suck. I fell on Saturday (Tysabri infusion was 20hrs earlier) and it took about 30 minutes to finally get back on my feet. ¬†Lucky it was in the bedroom on carpet and near a low bench. ¬†I only hyper extended my pinky toe which has turned a pretty purple and hurts like a son of a bitch. ¬† I “Googled” how to get up after falling and wanted to share this good video with you in case it could be helpful. ¬†It has given me some good ideas that i have not tried before. ¬†Maybe one day we will walk without falling and not need this video or a cane or a battery of medications.

Help for the Color Blind – EnChroma

I’ve known I have been color Blind since 4th grade during an in school test (if my memory serves me – Maybe 5th or 6th grade?). I remember other classmates finding out (no medical privacy back then) I was color blind and being harassed (asked) what color their Scooby Doo lunchbox was.

Color Blindness has not really affected me that I am aware of except for ¬†Computer utilization. ¬†You can find the test here: ¬†http://www.enchroma.com/test/instructions/ . ¬†Since I spend a great deal of time looking at monitors, I’ve decided to try a highly successful (80-85%) solution. ¬†EnChroma www.enchroma.com¬†has joined forces with Valspar (paint company) to bring special indoor and outdoor glasses to help the color blind in their¬†#ColorForAll Campaign.

Most of their stock is either sold out or backordered 3-4 weeks.  I have ordered the EnChroma Cx Hawk and will blog about my findings.

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MS Cog Fog or just getting older?

Something occurred tonight that made me think and REMEMBER that this topic was discussed on a  thread of an MS FB group I belong to in April of 2014.  I revived it to see how many others have done something like this.
My wife found these in the fridge tonight. Now how can i forget that i set these down tonight in the fridge but i can remember the month and year of this thread? *SMH* Must be the new lesion they found my last MRI. ūüôĀ

FridgeFloss

 

Please Provide Qualified Patients Access To Medicinal Marijuana

Senator Teplitz,

As a former High School mate of yours, I was pleased to see you as a sponsor of SB3 (An Act providing for the medical use of cannabis in the Commonwealth of Pennsylvania).   March is Multiple Sclerosis Awareness Month.

I was hit with the Diagnosis of the incurable disease of the central nervous system called Multiple Sclerosis in 2008 after a week of excruciating pain and blurred vision and then going blind in my Right eye (Optic Neuritis) .  A 3 day drip of Solumedrol and 10 days of a steroid taper and 8 months later my vision returned to about 95%.  This initial diagnosis was devastating but the issues continued including, foot drop, loss of rt hand functionality, right side neuropathy, pain, fatigue, spasticity, depression, bowel and bladder issues, balance issues, muscular issues and the list goes on.  Needless to say, my life has become a daily struggle to work, afford medical devices, etc.  I continue to go on a downward slope despite trying several different DMDs (Disease Modifying Drugs) including the one called Tysabri which has the highest efficacy.  I get Tysabri every 28 days in the form of a chemo type infusion.  I also take other pill drugs on a daily basis.  These can only slow progression as there is no cure and quality of life continues to go downhill.  There are others who have it far worse than I do.  Medical cannabis can allow a reduction in pain, spasticity and can allow elimination of drugs such as Hydrocodone, OxyContin, Lyrica, and others that are far worse for the body.

I urge you to press forward quickly with SB3 but not without reading and considering further information as to the correct delivery / treatment methods of medical cannabis.  These include vaporization / smoking.  There is too much risk and unknowns with the oral (edibles & oil) format.

I’m writing in regard to Senate Bill 3, which seeks to provide qualified patients with access to medicinal cannabis preparations from state-licensed dispensaries.

Passage of this act will not alter or interfere with already existing state laws discouraging the non-medical, recreational use of marijuana. It will offer qualified patients state-sanctioned access to a therapy may offer them significant benefits.

Twenty-three states and the District of Columbia already offer similar patients protections. Statewide,  84 percent of Pennsylvanians say that the physician authorized use of marijuana ought to be legal, according to a 2014 Franklin & Marshall statewide poll.  Moreover, in December Congress and the President signed off on language barring the Justice Department from interfering in the implementation of statewide medical marijuana programs. This language protects regulated programs like the one proposed by SB 3.

Clinical trials acknowledge that marijuana possesses therapeutic efficacy. A recent review of several of these clinical trials assessing cannabis, published in The Open Neurology Journal concludes, ‚ÄúBased on evidence currently available the Schedule I classification (for cannabis) is not tenable; it is not accurate that cannabis has no medical value, or that information on safety is lacking.‚ÄĚ

That said, I am concerned that SB 3, as presently written, fails to adequately meet some patients‚Äô needs. Specifically, it prohibits qualified patients from consuming medical cannabis by ‚Äúsmoking‚ÄĚ — a provision that will likely promote the production of cannabis-infused edible products or oils, but may potentially limit patients access to herbal preparations of the plant.

Oral preparations of cannabis such as edibles and oils possess delayed onset compared to inhaled herbal cannabis, making these preparations less suitable for patients desiring rapid symptomatic relief. Further, because of this delay in drug effect, patients consuming cannabinoids in this manner have a much more difficult time adequately regulating the substance‚Äôs dosing. Patients may wait well over an hour only to discover that they have taken an insufficient dose to provide effective relief. Or, conversely, they may discover that they have consumed a far greater dose than necessary ‚Äď resulting in prolonged periods of dysphoria.

Finally, the oral administration of ingestible cannabis products is associated with significantly greater bioavailability than is inhalation ‚Äď resulting in more pronounced variation in drug effect from dose to dose (even in cases where the dose is standardized). For these reasons, I encourage lawmakers to amend this language so that decisions regarding the types of medical cannabis formulations one may legally possess and the manner in which one chooses to administer it be left up to the patient.

I also encourage lawmakers to extend patient protections to include those diagnosed with HIV/AIDS and/or neuropathy. Clinical FDA-approved trials document that cannabis is safe and effective for the treatment of these conditions. These patients who may benefit from medical cannabis access can not, in good faith, be denied this alternative treatment option.

Please consider these changes that would further expand patients access and choices.

Regards,

Dave

www.itguruwithms.com