Annette’s caregiver pulls back the curtain

Annette Funicello’s spouse caregiver pulls back the curtain on not only the toll of chronic progressive multiple sclerosis on their lives but her recent CCSVI (chronic cerebrospinal venous insufficiency) treatment.

Annette Funicello: Her life with multiple sclerosis

Annette Funicello and Glen Holt

 “Now in a world exclusive Annette Funicello is back in the public eye. Glen Holt, her husband, invited W5 (Canadian news magazine television series) into their home to show the devastating effects of chronic progressive multiple sclerosis and to talk about his 25-year quest to find a treatment to help his wife…

… Today Annette receives around-the-clock care. She is fed through a tube and must be carried from her bed to her wheelchair.”

Back in 1992 when Annette Funicello first went public with her diagnosis of Mutliple Sclerosis it was a pivotal moment. Patti while technically diagnosed 7 years earlier had suffered her first major exacerbation 3 years earlier in 1989. 

Diagnosed with 'chronic progressive' MS, they just faded away, as do too many. Caregivingly Yours was launched several years ago so one life would not disappear drowned out by the Big Pharma marching band of treatments for milder MS. 

My hat is off to them both for inviting the world in to see that MS needs to be cured not treated.

Patrick Leer

BLOGS:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/ 

multiple sclerosis caregiving care giving

transfer, cluster headache, MS, et al

I believe I know why I write, but I was surprised at what people read the most according to Google over the last 12 months.

              

Caregivingly Yours Top 10

one-person transfer technique, the hug  (March 2010) … there was nothing explaining simply and briefly how to transfer someone by yourself. Associated You Tube video, wheelchair transferring Multiple Sclerosis caregiver, has been viewed almost 12,000 times. 

cluster headache: brain writhing on a corkscrew (May 2009) … originally posted two years ago this entry and associated cluster headache entries are read so regularly I created their own page on my web site cluster headaches 

a caregiver reflects on the R-Word (March 2009) … written two years ago as a commentary on spending of resources it’s seemingly grown cyber-legs.

hope, liberation, and CCSVI (July 2010) … any and all things CCSVI and MS are worth talking about

monster truck wheelchair shopping cart (August 2009) … adventures with inanimate objects seem to hold their popularity J

respite care: teen autism & special needs (August 2009) … daily search results landing on this entry 18 months later have again spawned its own page on CY web site, living with teen autism 

fondue with Uhthoff's Phenomenon / Multiple Sclerosis (April 2010) … I suspect both the nomenclature and story telling make this entry interesting for those searching for affect of heat on MS

Multiple Sclerosis parenting nature vs nurture (May 2010) … no matter how trying the present, the future always trumps. 

teen autism: diagnosis, a hitchhiker's guide (January 2010) … a simplified thumbnail has continuing appeal

midget albino cannibals vs pilgrims and Indians (November 2007) … written over 4 years ago, obviously the Internet is a strange and wonderful place. What kind of a search leads to this?

Caregivingly Yours began as and remains simply our story of trial and error learned lessons. When ‘sharing with’ meets ‘searching for’ in cyberspace - it can get interesting. 


Caregivingly Yours, Patrick Leer 
web site: caregivinglyyours.com 
videos: www.youtube.com/daddyleer 

hope, liberation, and CCSVI

After four score and more years of caregiving and living with Multiple Sclerosis it no longer surprises me when people approach us either as living encyclopedias of MS or to share MS news. 

            

Currently it is all about Chronic Cerebrospinal Venous Insufficiency (CCSVI) and/or Liberation Treatment.  

Yes hope of a new hypothesis on MS and treatment options has been loud.

Oversimplified CCSVI is about compromised blood flow in the veins draining the central nervous system. Liberation Treatment is about endovascular surgery to improve blood flow.

Paolo Zamboni, MD, Professor of Surgery, University of Ferrara, Italy looked beyond neurology for answers when his wife was diagnosed with MS. Improving blood flow reduced MS symptoms. Simply as a caregiver Paola earns a point from me.

Canadian TV heralded “The Liberation Treatment: A whole new approach to MS” in Fall 2009, click to watch on line. 

As for us …

“Zamboni emphasizes that the Liberation Treatment does not make people in wheelchairs walk again.”

Talk about a deal breaker!

Plus my Mother, decades ago, chose to have carotid artery surgery to restore proper blood flow. Though risk was “rare”, she suffered a massive stroke in post op. “CCSVI is an invasive procedure … risk for significant complication”.

You are your experiences.

When a wheelchair first became part of living with MS, Patti accompanied by her parents traveled to Germany for treatment. Hans Nieper, MD (1928-1998) offered an orthomolecular treatment for MS. She left the US in a wheelchair and surprised both Megan and me at the airport when she returned walking. … After spectacular early results, unfortunately in 2 years MS was again winning.

I wish for all those trying Liberation Treatment that it works.

In spite of the attention I was surprised one has to turn to medical tourism, but there it was, “CCSVI, Liberation Package … No Wait, All-Inclusive Fees in India … from anywhere upwards of $6,000 … (additional costs) airfare and post-treatment 3 day hotel stay”. You can almost imagine a voice over by the late Billy Mays.

Hurdles belong on a track not in the way of hope.

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/ 

videos: http://www.youtube.com/daddyleer 

musings: patrick ponders