Tuesday, May 31, 2011

Mutant POTSy Malady

I have to say that my hands seem to be my biggest visual shock from POTS. When I'm having a bad POTSy day I'm constantly taking a second look. They're quite shocking at times. I often think I'm looking at the hands of the living dead, black, blue and mottled. It may be the start of some mutant zombie transformation. In sharp contrast to my lily white legs they surely can't belong to me! My hands would look better on Sally in the movie Nightmare Before Christmas than they do on me. In fact I think her hands would make a more attractive match on me! I'm beginning to fear bedtime lest my hands detach themselves and strangle me in my sleep. Or maybe they'll crawl under my bed and attack my ankles during my nightly run to the ladies room. And the pain, it feels like I've stuck my hands in the icy snow for several minutes. I can hear Smeagol (Gollum from the Lord of the Rings) whispering "they bites us and pricks us my precious".

Hmmm.... wondering what tomorrow will bring! Rainbows would be a nice oddity. I think rainbow ears would be fun! If I place my order in advance maybe I'll get a choice of the next mutant POTSy malady. POTS does make for some interesting writing topics.


Proverbs 10:4
Poor is he who works with a negligent hand, but the hand of the diligent makes rich.

Monday, May 30, 2011

POTSy Monopoly

Having POTS is like playing a game of Monopoly, acquiring the rare Boardwalk card would be compared to a symptom free week and drawing the Mediterranean card is like landing in the hospital with some symptom of POTS gone terribly wrong. The pale face players are familiar, they're my POTSy FaceBook friends. Each roll of the dice sends dread to the roller and all those playing. Will it be a good week or bad?

Having POTS and being involved in several support groups on Facebook has connected me with many awesome woman who I've grown to care very deeply for. We share our ups and downs, we share what's working for us and cover one another in prayer when needed. But I have to admit it is difficult at times to watch the lives of these woman go from good months of travel, work and "almost normal" activity to a POTSy crash that lands them in the hospital many times worse than they started. Having POTS is like rolling a dice and not knowing if this is the day that "almost normal" will take a devastating turn to kidney failure, pacemakers or feeding tubes. I worry for my friends, but in the back of my head I'm asking "when will this be me?" There are times when my friends completely disappear off Facebook, and I wonder are they feeling better and enjoying life with no need to check Facebook or are they too sick to post.

I sometimes ask myself if it might be better to quit Facebook so I wouldn't be so affected by how my friends are doing, but then what would I do? Read a book or watch braindead TV? Hummm that's uplifting. These support groups give me the opportunity to uplift others, pray and share my experiences as well as get my questions answered and be uplifted and prayed for when I'm in need. I know worrying about what hasn't happened yet isn't smart and a waste of time and energy. I need to focus on today. Today I have mild to moderate POTS symptoms, my meds work better for me than most and I'm able to work. Today I can uplift others, share and pray.

Some day I'll be able to burn that Obnoxious POTSy Monopoly board, throwing each card labeled with an obnoxious symptom into the roaring flames while doing the happy dance around the flames.


Matthew 6:34
Do not be anxious for tomorrow for tomorrow will care for itself. Each day has enough trouble of it's own.

Wednesday, May 25, 2011

Article For a Friend

My friend Trace has a genetic form of dysautonomia and did some research on a new experimental drug. Posted it for those who want to check it out.

And here's more info

Chelsea Therapeutics Announces Northera Poster Presentations and Symposium on Neurogenic Orthostatic Hypotension at MDS 15th International Congress of Parkinson's Disease and Movement DisordersMon May 2, 2011 7:30 am | about: CHTP Font Size: PrintEmail Recommend 0 Share this page
Dr. Robert Hauser to Present Late Breaking Poster Highlighting Efficacy of Northera in Patients with Neurogenic Orthostatic Hypotension associated with Parkinson's Disease on June 8th 2011
Dr. Gregor Wenning to Present Poster on Safety and Efficacy of Northera in Multiple System Atrophy on June 8th 2011
Chelsea to Sponsor Symposium Reviewing Results from Northera Clinical Program in Neurogenic Orthostatic Hypotension on June 9th 2011
CHARLOTTE, N.C., May 2, 2011 (GLOBE NEWSWIRE) -- Chelsea Therapeutics International, Ltd. (Nasdaq:CHTP) announced that two posters describing the clinical benefit of NORTHERA" (droxidopa) have been accepted for presentation at the Movement Disorder Society's 15th International Congress of Parkinson's Disease and Movement Disorders June 5-9, 2011 at The Metro Toronto Convention Centre, Toronto, Ontario, Canada. In addition to the two posters presentations, Chelsea will sponsor a symposium detailing the clinical results of Northera for the treatment of neurogenic orthostatic hypotension (NOH) at 12:00 pm on June 9, 2011.

The following poster detailing results from Northera Study 306A has been accepted as a late breaking submission and will be presented by the study's principal investigator, Dr. Robert A. Hauser, on June 8, 2011 from 1:30 pm 3:00 pm ET:

"Efficacy of Northera (droxidopa) in Patients with Neurogenic Orthostatic Hypotension associated with Parkinson's disease (PD)," Robert A. Hauser (1) MD, Ramon Gil (2) MD and Stuart Isaacson (3) MD. Tampa (1), Port Charlotte (2), Boca Raton (3) Florida, USA. Abstract Number: LB21

In addition, the following poster will be presented during Poster Session III, June 8, 2011, from 9:00 am - 6:00 pm ET:

"Safety and efficacy of Northera (droxidopa) in Multiple System Atrophy," Gregor K Wenning, MD, PhD MSc1, Horacio Kaufmann, MD2, Christopher J Mathias, D.Phil, DSc, F.R.C.P3 and Pietro Cortelli, MD4. 1 Division of Clinical Neurobiology, Innsbruck Medical University; 2 NYU Medical Center; 3 Division of NeuroScience and Psychological Medicine, Imperial College of Science, Technology, and Medicine at St Mary's London and 4 Department of Neurosciences, University of Bologna. Abstract Number: 778

Chelsea will also be sponsoring a symposium, featuring a panel of academic thought leaders and experts in the field of movement disorders, to review the role of norepinephrine in primary autonomic failure, clinical findings and therapeutic opportunities for Northera in neurogenic orthostatic hypotension. The session being held on Thursday, June 9, 2011 at 12:00 pm ET will be moderated by Joseph Jankovic, MD, Baylor College of Medicine, Houston, TX, and will include the following presentations:

The Role of Norepinephrine in Primary Autonomic Failure associated with PD, MSA and PAF

Peter LeWitt, Southfield, MI, USA

Focus on NOH and Autonomic Failure in PD
Northera (droxidopa) Phase III Clinical Data

Gregor Wenning, Innsbruck, Austria

Clinical Trial Considerations for Neurogenic Orthostatic Hypotension (NOH)
Study 301 Results
Orthostatic Hypotension Questionnaire (OHQ)
Symptoms; Activities of Daily Living
Preliminary patient falls data
Northera (droxidopa) 306A Clinical Data

Robert Hauser, Tampa, FL, USA

OHQ and Falls
Movement Disorder Society Unified Parkinson's disease Rating Scale (MDS-UPDRS) scores
Hoehn & Yahr scores
Prospective study in 306B
About Neurogenic Orthostatic Hypotension

NOH is a neurogenic disorder resulting from deficient release of norepinephrine, the neurotransmitter used by sympathetic autonomic nerves to send signals to the blood vessels and the heart to regulate blood pressure. This deficiency results in lightheadedness, dizziness, blurred vision and fainting episodes when a person assumes a standing position. Symptoms of chronic NOH can be incapacitating, not only putting patients at high risk for falls and associated injuries, but also severely affecting the quality of life of patients and their loved ones. The only FDA-approved treatment for orthostatic hypotension has a black box warning indicating that the drug has not been shown to be effective in alleviating the symptoms of the condition and is associated with a pronounced side-effect profile including significant supine hypertension.

About Northera

NORTHERA" (droxidopa), the lead investigational agent in Chelsea Therapeutics' broad pipeline, is currently in Phase III clinical trials for the treatment of symptomatic neurogenic orthostatic hypotension (NOH) in patients with primary autonomic failure a group of diseases that includes Parkinson's disease, multiple system atrophy (MSA) and pure autonomic failure (PAF). Droxidopa is a synthetic catecholamine that is directly converted to norepinephrine (NE) via decarboxylation, resulting in increased levels of NE in the nervous system, both centrally and peripherally. Droxidopa is also being studied for the treatment of fibromyalgia in an ongoing Phase II trial and completed a Phase II trial in intradialytic hypotension (IDH) study with positive results.

About Chelsea Therapeutics

Chelsea Therapeutics is a biopharmaceutical development company that acquires and develops innovative products for the treatment of a variety of human diseases. Chelsea's most advanced drug candidate, NORTHERA" (droxidopa), is an orally active synthetic precursor of norepinephrine initially being developed for the treatment of neurogenic orthostatic hypotension. In addition to Droxidopa, Chelsea is also developing a portfolio of metabolically inert oral antifolate molecules engineered to have potent anti-inflammatory and anti-tumor activity to treat a range of immunological disorders, including two clinical stage product candidates: CH-1504 and CH-4051. Preclinical and clinical data suggest superior safety and tolerability, as well as increased potency versus methotrexate (MTX).

This press release contains forward-looking statements regarding future events. These statements are just predictions and are subject to risks and uncertainties that could cause the actual events or results to differ materially. These risks and uncertainties include risk of regulatory approvals, including our planned NDA for Northera; risks and costs of drug development, including the uncertainty of cost, timing and outcome of clinical trials like Study 306; our reliance on our lead drug candidates Droxidopa and CH-4051; our need to raise operating capital; our history of losses; reliance on collaborations and licenses; intellectual property risks; competition; market acceptance for our products, if any are approved for marketing; and reliance on key personnel including specifically Dr. Pedder.

CONTACT: Investors & Media:
Kathryn McNeil
Chelsea Therapeutics

Source: Chelsea Therapeutics 2011 GlobeNewswire, Inc.

Hopefully this will be the new drug that will cover all of us dys pateints!


Saturday, May 21, 2011

Party Leftovers

For some reason this week I've been comparing myself to party leftovers. You know.... those things you throw in the trash after the party is over; the shredded pinata, deflated balloons, and the drink saturated napkins. All looking quite stunning before the party, all carefully chosen and meticulously placed. Only to be thrown hurriedly into the nearest Hefty garbage bag as soon as the party comes to an end.

It all started on Tuesday night after my open house at my school. After many weeks of working with 32 kindergartners on special class projects, cleaning the room, prepping bulletin boards and binding student work it was all over in an hours time. It left me feeling like a shredded pinata that has been joyfully hit with a large stick by many exuberant children on a mission to be the one to burst it open and the first to grab handfuls of candy. There wasn't a part of my body that didn't feel achy and bruised.

On Thursday I had a School Site Council meeting and two parent/teacher conferences. When I got home all I wanted to do was get in bed and hide. That night my oxygen levels felt low, tingling arms and lips with a side order of brain fog. I felt like a balloon that has been deflated, completely stretched out of shape and wishing for more air.

On Saturday I had a wedding shower I was looking forward to going to. When I got there I felt pretty good, all of my closest friends were there and it sent my spirits soaring to see them and connect with each of them. When I walked in everything was lovely, all carefully thought out and prepared. As the party carried on my body began to rebel. My body doesn't seem to appreciate sitting for any length of time and church folding chairs are not the most comfortable. Sitting in one for more than 10 minutes can make the sturdiest hiney squirm. The noise level seemed to increase as each minute passed as everyone was laughing, sharing and enjoying one another all I wanted to do was to flee to my soft bed and take a nap because my body had finally hit overload. As I headed out the door to leave, I passed a sopping wet napkin and thought to myself that it looked how I felt, overused and a shapeless clump ready for the nearest Hefty trash bag. As I headed for home I began feeling resentful that POTS seems to be stealing the things I enjoy most

Party leftovers seems to be an ongoing theme for how I've been feeling the past month. All I seem to want to do is curl up in bed with a good book. It's times like these that I loath myself the most, I should be joyful and thankful for this precious life I've been given, but all I want is an overhaul and my life back as it was. Having a pity party and looking for the Hefty bag!


Psalm 26:2
"Cross examine me, Oh Lord, and see that this is so; test my motives and affections too"