Wednesday, February 18, 2015

SLEEEEEEEEPPPPPPPPP

MS and Sleep! You don’t have to have MS to have sleep issues and you can have sleep issues and not have MS. But when you have MS and sleep issues 2 wrongs definitely do not make a right.

It’s bad enough to have weakness, fatigue, spasms, bladder/bowel issues, stiffnessness, headaches, etc. (you know the drill)… BUT SLEEPLESSNESS! Come on already!

There’s a reason why they use sleep deprivation as a form torture. It’s already a life adjustment and annoyance living with the symptoms of MS but sleep.  But sleep issue adds insult to injury.

Sleep issues could also be part of your “package” with MS.

Here are some things that might be going on:

  • ·      Sleep Apnea. Most people don’t know they have this. Because the sign is snoring. So unless you have someone sharing a bed with some you don’t know you are dong it.  Best bet if you are concerned see a sleep specialist. This could be serious.
  •  
  • ·      Nocturia… This can really spoil a night’s sleep! This is an annoying condition happens when ones active bladder continues to wake you up several times during the night to go urinate. So just when you are in the dead of sleep your bladder “knocks on the door”. You get up, got to the bathroom, go back to bed, get back to sleep and your bladder “knocks at the door” again.
  • ·      *
  • ·      Periodic Limb Movements in Sleep PLMS. Imagine having a restful nice sleep and then as if an alien has invaded your legs you get a spasm.  So not only does it wake you up and freak out now you have trouble going back to sleep because you are waiting for her it to happen again.
  • ·      Hypersomnia….Now this one can be so frustrating. Essentially it’s described as “excessive sleepiness” which happens thru out the day. To Aleve this tiredness most people have to take excessive naps, which can be very frustrating and cause anxiety.
  • ·      Narcolepsy…we’ve all heard about it and that’s exactly what it is says an “uncontrollable” desire to sleep.
  • ·      Stress and Depression….that just goes without saying!
  •  


For those of you who are anti-medication I completely understand it. But for those of you who are not and you are sick and tired of these symptoms that there are medications to help improve your quality of life.’’

For strategies how sleep better check out this article Author: David Engstrom,PhD, Can Do Multiple Sclerosis http://bit.ly/1DeBG2R





Thursday, June 12, 2014

Dr. Kachuck Part III "Tools For Success"

Part III with Neurologist and Top Multiple Sclerosis Dr. Norman J. Kachuck M.D. Click here to see.

Does attitude matter?

Thank you again to the generosity of Director of Photography Seth Saint Vincent.

Please leave your comments....

Knowledge is the enemy of fear.

Yours in Health,

Team Multiple Sclerosis Revolution

Tuesday, May 20, 2014

Interview with Dr. Norman Kachuck Part II "Why Isn't There a Cure for MS?"

Again many thanks to Seth Saint Vincent, Cinematographer and Director of Photography for donating his time to video this for Team Multiple Sclerosis Revolution.

Also many many thanks to Dr. Norman J. Kachuck M.D., Neurologist and Top Researcher of Multiple Sclerosis.

Check this video out "Why Isn't There a Cure for MS?"

Your comments are greatly appreciated!!!!

Until then..........
Stay Empowered
Team Multiple Sclerosis Revolution


Wednesday, May 14, 2014

A question to Dr. Kachuck from Part I

In case you missed Part I with Neurologist and MS Research Specialist Dr. Norman Kachuck here it is.........


After this part of the interview I asked Dr. Kachuck what he meant when he said

I’ve been thinking a lot about the ethics of medical practice. How we work as doctors in society what does it mean to be a physician philosophically, psychologically and in terms of neuroscience of being able to somehow control of a body that’s full of things including the immune system and what does consciousness have to do with it?”

His response was:

Doctors today have such a great advantage with all the technology available today. But the problem is that Doctors become so focused and enmeshed in the science they forget that they are dealing with a “person”. Doctors are loosing in his words “human to human” factor and becoming “zombie physicians”.

He goes on to say that physicians must work with patients as a whole, which the technical word  is called biopsychosocial. Which basically means mind, body and spirit.

It’s important for the physician to listen and understand the values and concerns the patient has in terms of their health and their personal values. Doctors today are lacking empathy and compassion, not talking or listening to patients “human to human” and as Dr. Kachuck says, “treating the patient like ‘someone’ instead of ‘something’”.

How do we resolve this, that’s the real question? On one hand you have the doctors who already subscribe to this philosophy who have been practicing for years and then you have doctors who have been practicing for years with no bedside manner at all.

Truth be told medical schools should have a class strictly on this as well as doctors who have to attend annual classes to renew their license.


What can you do? If you feel that you are not being heard or understood by your doctor get rid of her/him. You are worthy of the holistic medical experience. This is your health and you are your #1 priority. Regardless of how “good” the doctor is.

Thursday, May 8, 2014

Dr. Norman J. Kachuck M.D. Neurologist and MS Researcher Part I

This video presentation was filmed by a generous donation of Director of Photography/Cinematographer Seth Saint Vincent.






This part of a few interviews with Dr. Norman J. Kachuck M.D. Neurologist and Multiple Sclerosis Researcher.

Stay tuned to the next blog where I address Dr. Kachuck about what he thinks about the role of the physician........




Thursday, March 13, 2014

MONEY, MONEY, MONEY

With a Diagnosis of Multiple Sclerosis comes fear of the unknown! Questions like: Am I going to be able to keep doing my job?  What's the extent of my disability going to be? And more importantly HOW I AM GOING TO  BE FINANCIALLY SUPPORTED? Just these thoughts of the unknown  can be overwhelming.

There is a gentlemen in my support group who has "the invisible" symptoms who is an attorney by trade. His  doctor wrote a letter to his firm saying he could  only work no more than 40 hours a week, because the immense fatigue he was getting working a 60-80 hour week was no good for his health. As a result the FIRM...yes the FIRM is trying to edge him out. A young married man with 2  young children. Luckily the National Multiple Sclerosis Society has taken legal action against the FIRM. YEAH

That's just one of thousands of stories. Financial fear is a Universal fear with or without disease. But the uncertainty of not having funds for necessary items for your daily functions can be down right depressing (and we all know depression is one thing MSer's do not need).

To Empower YOU:
You might find out what your rights are with Social Security DO NOT LET THEM BULLY YOU NEVER TAKE NO FOR AN ANSWER
 Maybe contact the  local Department of Rehabilitation to find suitable work for your changing needs

Also contact the Multiple Sclerosis Foundation and the National Multiple Sclerosis Society to find out about financial assistance.


The main resource I encourage everyone to explore are GRANTS!  DO  NOT be afraid or intimidated  applying for GRANTS. You may qualify for more than you know, DO NOT THINK IN LIMITATIONS. You don't have to be a professional grant writer. Let me say this again...YOU DON'T HAVE TO BE A PROFESSIONAL GRANT WRITER!!! You just have to be patient and diligent. The work you put into it will feel invasive and tedious but the rewards can be quite beneficial for you and your family

  • Research different grant/foundations--think outside the box for example: Blindness, Spinal Cord Injury, Speech, Hearing etc.
  • Get an application
  • Get a letter from your doctor stating your diagnosis and your situation
  • Copy of your last tax return
  • Start writing your situation out! Because they all want an explanation of why you need help. Tell your story. Have your friends read it before sending it


There are tons of organizations that are out there that are designed to help you with the quality of your life.

The key is to NOT give up of get Discouraged. 

Please share below organizations that have helped you out. That's purpose of this site is to help each other out!!!!!

Until Then, STAY EMPOWERED
TEAM MULTIPLE SCLEROSIS REVOLUTION



Thursday, February 27, 2014

Whew hoooo it's the ABILITIES EXOP

If you haven't got a chance to go in a location near you, it's worth the ADVENTURE!!!!!!!!!!

The kick off for the year 2014 for the Abilities Expo starts tomorrow in Los Angeles. Click the above link to find one NEAR you.

Everything you can think is jammed pack in this 3 day weekend. Speakers, demonstrations, therapy equipment, home care aids, mobility accessible vans...the list goes on!

Why do they do this? To make money! Yeah. But it give Patients, Caretakers, and Family information that they never knew about that they can take advantage of. That's where I learned how MS patients qualified under the United Spinal Cord Association. 

There is something for everyone. Kids, seniors, adults etc. If you are looking to find something to help improve your quality of everyone's life, and meet a whole new world of brave and courageous people it's worth the adventure.

You can even rent a scooter for FREE, admission FREE , parking NOT FREE...ha ha. At least not in Los Angeles.

Come by and say "hi" I'll be donating time at the  Triumph-Foundation. 

I can't wait to report back to you share with you what I learned.

Until then, Stay Empowered,

Team Multiple Sclerosis Revolution