"A Nervy Mother's Day"

This Mother's Day brought me a bag of mixed feelings and blessings. It was definitely a nerve-wracking time.

You see, this Mother's Day, May 11 th, was my third without my mom. I lost her two days before her 83 rd birthday in December 2005. In fact, she was buried on her birthday and I still grieve quite heavily for her...

So, when I heard NATIONAL NEUROPATHY WEEK was being launched May 12 th - 16 th, it seemed only appropriate I throw myself into helping fight the nerve diseases and neuromuscular disorders that crippled, pained, and made my mom bedridden before her cardio and respiratory systems failed.

Moreover, you could say by becoming a "friend of MDA" and a member of The Neuropathy Association, I had taken the mystery out of finding the perfect gift for my beloved mother because by raising awareness to raise funds for research minutes, I had found the gift that keeps on giving.

In fact, my special gift should have been a no-brainer even the National Institute of Neurological Disorders and Stroke [ www.ninds.nih.gov ] would approve of, but when PN sufferers are too ill to even take care of themselves, how can they support a project and join a grassroots effort to spread the word?

Thus, I've become "the frustrated daughter," adding yet another title to an already full moniker as, "a committed and dedicated daughter" known as "that nervygirl," NervyLisa, the neuropathy activist.

Although, being known as a "TFD" is still better than being referred to as "just the daughter" hospital staffs commonly called me...

You see, as a TFD, I'm trying to establish a global movement - GET NERVY! Help end nerve pain, nerve damage, and neuromuscular atrophy - to raise awareness and funds for both the acquired and inherited peripheral neuropathy diseases that robbed my mom of mobility and function, and are now robbing her brother - and, it's not easy.

It's been most challenging trying to generate public interest for a subject hard to comprehend and identify with since there are so many varieties of neuropathies and each has symptoms that can't be seen, only felt by the sufferer.

After all, numb toes aren't visible, only cold to the touch, and freezing to the person who has them. In fact, my mother would often say as she struggled to walk, each step was like "walking on wooden plank boards."

The same applies to people afflicted with burning, stabbing, shooting pains in their feet, ankles, calves and legs. They get the fiery brunt witnesses can't even begin to imagine.

The Neuropathy Association cites, "neuropathy is the most common disease you've never heard of" because there are over 100 types and causes. Among diabetic neuropathy, trauma-related neuropathy [from nerve damage], alcohol-related neuropathy, nutritional neuropathy and cancer-treated neuropathy to name a few, you can get symptoms from toxic chemical exposure, lupus, metabolic, hormonal and thyroid problems, and spine surgeries, not to mention auto-immune diseases.

My mom was originally diagnosed in the late 1990s with PN from spinal stenosis, scoliosis, and sciatic nerve condition. It wasn't until 2000 that a neurologist saw my mom's feet before a nerve conduction test and asked me "Where do your people come from?" Until then, the majority of Charcot-Marie-Tooth Disease sufferers, the hereditary version of PN and a form of muscular dystrophy, were Canadian.

We're not Canadian. My ancestry is Austrian. My mom just happened to have severe hammertoes, and extremely high arches neurologists affectionately term, "stork feet." In fact, one in 2500 is afflicted with "stork feet" but I don't see this statistic becoming common knowledge. Further, the Northern California Chapter of The Neuropathy Association projects [ www.pnhelp.org ] that in the future, one in five will suffer neuropathy in some way.

Meanwhile, two decades ago, my uncle had four failed back surgeries to correct his scoliosis - only to have the procedures compress his nerves in such a way his neuropathic pain is still uncontrollable. His drop foot and gait imbalance have also progressively worsened over the years. Then, after my mother was diagnosed, a neurologist termed his slender ankles and calves "stork legs" saying he, too, had CMT.

Today, more than 20 million people suffer in silence with a myriad of symptoms in their legs, feet, hands and arms, because doctors still don't have painkiller cures, or neuromuscular miracles. On the flipside, patients are still uninformed as to where to turn for resources.

The Neurology Now magazine, available through their website www.neurologynow.com , is a complimentary subscription provided to the patient, caregiver, and family members. The publication is chock full of information for healthy living for patients and families published by the American Academy of Neurology.

Further, a controversial PN treatment is the infrared light therapy, brand name ANODYNE. My mom was denied receiving it because back in 2004 health care providers said the treatment was experimental and unproven. Even though, the brand's website [still] touts it is being used on NAVY SEALS and in the U.S. military.

It's incongruous to me that a treatment given to our troops helps them, but a civilian screaming in pain and anguish can't get relief? I feel a Michael Moore moment coming on...

Now however, on www.clinicaltrials.gov the Mayo Clinic [ www.mayoclinic.com ] in December 2007 initiated a study to see how effective infrared light therapy really is. I saw it work well on my mom the two times she had it - her pain lessened. For her not to be able to get a written prescription to get it on a regular basis is just incredulous. After all, Medicare and Medi-Cal acknowledged they would cover the treatment.

It's now been two and half years after my mom's passing, and my uncle still struggles to manage his pain that morphine doesn't quell, and still tries to cope with an incurable problem.

To wrap this up, this Mother's Day present can live on. We can make a difference together and work to take the PN out of the pain equation. After all, you shouldn't have to witness what I have - and that's the moral of this Mother's Day story.

Other internet resources:

http://health.nih.gov - Health information includes list of health databases;

www.nih.gov - National Institute of Health, The Nation's Medical Research Agency;

www.neuropathy.org - The Neuropathy Association's site;

www.mdausa.org - This year's muscular dystrophy's poster child has congenital neuropathy in the CMT family; MDA also reports it costs $85 per minute to conduct research;

http://invisibledisabilities.ning.com - A social networking site that provides support;

www.numbtoes.org - The UCLA-located Neuropathy Support Group of Los Angeles

www.change.org - changes "Be Proactive Against Neuropathy Pain" and "Get Nervy!" are listed;

www.hnf-cure.org - The Hereditary Neuropathy Foundation's website;

www.neurologychannel.com - for resources and information;

www.charcot-marie-tooth.org - The Charcot-Marie-Tooth Association's website;

www.goodsearch.com - the search engine that donates "pennies from heaven" from advertisers with each search and click when you use it on behalf of neuropathy.

Lisa Gilman can be reached at www.myspace.com/NervyLisa and on Facebook, and on http://www.invisibledisabilities.ning.com/profile/nervylisa where she advocates for PN and CMT.