Category Archives: Multiple Sclerosis

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’s 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.

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. 🙁

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, “Based 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.”

That said, I am concerned that SB 3, as presently written, fails to adequately meet some patients’ needs. Specifically, it prohibits qualified patients from consuming medical cannabis by “smoking” — 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’s 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 – resulting in prolonged periods of dysphoria.

Finally, the oral administration of ingestible cannabis products is associated with significantly greater bioavailability than is inhalation – 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

JCV Test

121914-JCVTest – Negative again!  Tysabri continues!

Although my index went from .07 to .11 – its not a huge jump and still negative.  We still don’t know if the Titer Index value plays a huge role or not.  Some Dr’s seem to think so.

My 58th Tysabri infusion is scheduled for 1/16.   That makes 4.5 years (58 divide by 13 infusions per year) on Tysabri.

I will have my MRI (its been about 2 years) in the next 2 weeks to check for lesion / Brain/Spine changes.  HATE the MRI!

 

Tools of the MS Trade – Part Deux – Making life easier

Growing up i was Rt hand dominant, however I Golfed lefty and batted lefty (it also gave me an extra step closer to 1st base 🙂 ). My Father said if i ever wanted to get last years clubs handed down, I’d switch and learn Righty; which I did. That was many moons ago (8yrs old and up) and well before MS Dx with optic Neuritis in 2008 at the age of 39. In the past 6 years my Rt side foot drop and Rt hand/arm Neuropathy along with Frozen Shoulder has plagued me — well, like the plague.

I use several tricks to “keep moving” and work smarter, not harder.
1. Massage Therapy (she spends a good 30 minutes on my hand, arm and shoulder alone).
2. I use a “signature stamp” from Vistaprint to sign/stamp checks and other documents where a stamp is appropriate.
3. I use a UBE (upper body Exerciser) – like a small bicycle wheel with pedals for my hands, arm and shoulder.
4. Tricep pressdowns & lat pulldowns with a velcro cuff that has a hook on it and very light weights.
5. Cable rope pulley on my door to stretch the arm.
6. I am constantly stretching my hand and fingers backwards to keep them out of the “death grip”
7. i wear a compression glove at night and a hand splint a couple nights a week that keeps my hand and fingers/thumb in a open slightly arced position.
8. I use a “Handshoe” mouse which i can move but i still have to left and right click by pushing my right fingers with my left hand’s fingers. I also have bluetooth trackpads for my Mac and Windows machines that i use with my left hand.
9. other tools i use can also be found on my blog 🙂

Hope this is somewhat helpful. I can link you to the actual products that can all be found on Amazon if you would like.

Tools of the Trade – Making life with MS easier – Part 1

Many of my friends know how into technology and home automation I am.  I really enjoy fixing things.  I always have.  I can remember early on in life fixing things around the house.  My technology crippled parents would be amazed when things like the toaster oven or microwave were working again after I fixed them.  Or the time I ended up converting all of the hard-wired rotary phones in the house to modular jacks and touch tone.  I ended up saving them $$ on their leased phones – you know the real heavy ones with the loud hammer bells?  I also used to get hand held video games and take them apart to see what made them tick and then put them back together again.  Sometimes a screw or part might have been missed so i’d do it all over again.  I LOVED IT.

My wife asked me to fix her towel rack the other day and I was worried I’d have to call someone and pay them as this would be something I could do no problem.  But MS has taken away a lot of skills from my right hand and arm so much that I so gladly would give just about anything to have back.  It sometimes brings me to anger or tears the things I can no longer do that I loved so much.  Well I’ll be damned, I actually did fix the towel rack for her.  It might have taken me a couple minutes longer and I invented new ways of doing it or holding and propping things up but it made me feel worthy again.  I even had the energy to put all the tools away and clean up afterwards.

“Tools” were then and even now a very important part of how we can get things done.  I’d like to share with you some things that I use to try to make my life with MS a little easier.

Neato Robotic Vacuum!  Does a better job than the cleaning lady!  Cool patterns too!  http://www.neatorobotics.com/

20130511-214709.jpg

neato

 

 

 

 

Grabber Tool.  Why bend over if you dont have to?  Unger 92134 36-Inch Nifty Nabber Pick-Up Tool with Aluminum Handle

grabber

 

 

 

 

 

NEST – Thermostat – www.nest.com – Control your heating and cooling right from the web or your smartphone!

Nest-BR

 

nest

 

I will post more tools of my trade that make MS life much easier in my next post.  To be continued…Part 2!