Results of Lundbeck's Donation of $10,000 to NORD for Raise Your Hand!

 Rare Disease Day Partner

Thank you for Raising Your Hand to Fight Rare Diseases!

In the weeks before Rare Disease Day 2011, many of you circulated the Raise Your Hand to Fight Rare Diseases icon to your members and friends. Lundbeck Inc. had made a commitment to donate $1 for each click on the icon, up to $10,000, to NORD's General Research Fund. That fund supports research on rare diseases for which there are few other sources of funding.

Thanks to your amazing support, there were more than 11,000 clicks on the Raise Your Hand icon! As a result, Lundbeck has made an unrestricted donation of $10,000 to NORD's General Research Fund.

NORD's Research Committee decided to allocate the donation to an existing restricted research fund for diffuse scleroderma, also known as systemic sclerosis. That fund was established several years ago by patients and their families. It has received a steady stream of small donations over the years, but was still several thousand dollars short of the amount required ($33,500) to fund a grant.

The Lundbeck donation has made it possible to fund a grant this year. Recently, NORD posted its Requests for Proposals for 2011.

NORD has received many emails over the years from patients who have this very disabling rare disease. One patient recently wrote: "Please work hard on behalf of all of us who are trying so hard to maintain a quality of life."

Your clicks to "Raise Your Hand" will give new hope to these patients and their families. Thank you for supporting this important campaign on behalf of rare disease research! 

(This was the icon shared by many with friends and family in the weeks before Rare Disease Day 2011.)

THANK YOU TO ALL MY FRIENDS & FAMILY WHO CLICKED ON THE LINK!

Appointment with "New" Neurologist ~ Finally...

On Feb 9th (I think) I made an appointment with the Neurologist my Neurosurgeon referred me to, Her name is Dr. Andrea De Leo.  Her Office is in Munster, IN. Her first available appointment was not until Monday, March 28, 2011 "NOTHING" earlier, I thought I'd die when I heard the receptionist say that! So I waited weeks, and had a few more surgeries!

My husband started his new job with the Boilermakers the week prior to my appointment. He was called out on a job that was 5-12hr shifts, and then it would be done, he would have to wait to be called out on another job... Someone was looking down on us that Monday morning of March 28th, because thankfully he did NOT get a call to start another job that day, and he was able to accompany me to this new Dr's appointment. (He did get called on Tuesday to start on Wednesday thank God!!) It's not that I didn't have a way to get there, it's just NOBODY knows you better than your spouse, and my brain is so screwed up that I can barely remember what I did yesterday, let alone going through my whole history, again... with a new Dr.

It's a short drive to Munster, THANK GOD! Lol... I have horrible Anxiety in the car!

Dr Munoz sent over an letter to Dr. De Leo, introducing me to her (re: my history), and she got my records from my prior neurologist, that I only saw about a dozen times, and I brought my most recent Head CT & MRI for her to review. To my surprise when she walked into the room, she was either my age or just a bit older... She is a Vascular Neurologist, and SHE was totally blown away while I'm telling her my story. She sat with my husband & me for almost 2 hours, and she never rushed us!!!

She did the "regular" Neuro Exam after I told her my very lengthy story, but she performed some things I've never seen or had done before. I don't even know what they were to tell you! I really liked her, for a first visit. I guess I will need to see her a couple of times before I have a true opinion of her... BUT so far, so good! : ) My last Neurologist treated me like all I wanted was drugs, even though I NEVER once asked him for anything, except a spinal tap when I knew I was having Shunt Malfunction. He didn't believe me in May 2010 when I told him something was going on, then in September 2010 (still having issues) I told him I needed a Spinal Tap and that my shunt wasn't working properly, and he told me that there was nothing wrong with my shunt, and that he couldn't help me any longer. Later, I got a letter from his office in the mail, they cancelled all my future appointments, and told me he would no longer see me as a patient! Then in October 2010, I had a spinal tap ordered by my NeuroSurgeon, and sure enough, my pressure WAS elevated... Dr. De Leo was blown away by his actions, and she seems VERY sincere, and interested in getting me better...

These are the tests that she ordered for me...

CDP ~ Computerized Dynamic Posturography- balance test
VNG ~ Videonystagmography - for testing inner ear and central motor functions
ABR ~ Auditory Brainstem Response - a screening test to monitor brainstem response and hearing loss.
VEMP ~ Vestibular Evoked Myogenic Potential - is testing on the inner ear. (Balance & Dizziness)
TCD ~ Transcranial Doppler - measures the velocity of blood flow through the brain's blood vessels.
EEG ~ Electroencephalograph - records the electrical activity of the brain.
Neuro-Rehabilitation with an Occupational Therapist, due to balance & dizziness issues.

~A new Sleep Study - Apparently, when you have Sleep Apnea, you should be tested once a year! I haven't been tested since the original test in August 2009. I developed Sleep Apnea because my Chiari Malformation narrowed the space in my neck.

~Referral to my Ophthalmologist ~ Dr Scott Cory, I have Papilledema in both eyes, Right eye is worse, due to Chronic Intracranial Hypertension, she ordered a bunch of tests for him to perform.

~Referral to a Neuro-Ophthalmologist for possible Optic Nerve Sheath Fenestration surgery, to relieve the Papilledema. Dr. James Goodwin @ UIC in Chicago.
And lastly~ a referral to a therapist for my depression... : (  Ughhhh... Tried it once before, & HATED it.

Lastly - Dr De Leo wrote me off work for another 8 weeks while I get all these tests done! My new return to work date is May 16, 2011.


Quote of the day from a FB friend.
To feel pain, is to have feelings.
To cringe at the light, is to see,
To run from the noise, is to hear.
To have a bigger brain than most, is a heavy medal to wear, yet we think deeply!


I am very thankful for all my new friendships, especially the ones who are right in my own back yard!!!

NOBODY can relate you my problems like a fellow IH'r & Chiarian...

People living with a chronic illness need you to be there, even if they have trouble saying it.

Since being diagnosed with 2 chronic illness's, Intracranial Hypertension (IH), & Chiari, I have gone through a lot. Both are often an invisible illness, and many times it is not fully understood what we go through on a daily basis. Please read what I have copied below and try to understand a few important things that we want you to know.


Chronic illness isn't something that we like to talk about, but every day people are diagnosed with an incurable illness or disease. Learning to care for and support family and friends with a chronic illness takes time and patience. When the patient is first diagnosed, everyone in the circle of family and friends gathers the wagons. If the initial diagnosis involves hospitalization, some will visit, others will cook food, and still others will offer to babysit or clean house. Everyone wants to help out in any way possible. This is a great way to show your support and friendship. The problem with chronic illnesses is that, because they last over time, usually the extensive support system disappears. People get tired of erratic hospitalizations and days on end when the illness puts the patient down for the count for a week or more. It is easy to become immune to the painful complaints of the patient, but is essential that you do not. We still need you to be there.


If you are a friend, family, or caregiver of a chronically ill person, commit to that individual and yourself that you are willing to stick with them through thick and thin, in sickness and in health. The chronically ill need to know that you understand and that you care. At some point in the illness most patients begin to assume that anyone who sticks with them is doing so out of obligation. Find every way possible to assure the patient that you are standing beside them, going to doctors' appointments, or spending nights in the hospital because you care. It is up to the caregiver and friends to help allay the concerns of the patient that they have become a burden.


Unless you have had a chronic illness yourself, you cannot imagine the mental battle that goes on in addition to the physical battle that we as individuals are facing. Sometimes, previously vital and healthy people are struck suddenly with the symptoms of their illness. They may be aggressive, hard workers, productive people in society. When they are taken out of the game, they suffer a huge blow to their sense of self-worth. They may feel very lonely and become depressed as time goes on.


As a friend or family member, you can play an important role in two ways. You can affirm their worth verbally, via emails, Facebook, or cards. You can't tell them enough how important they are, and how valuable they are as a human being. You can also help build their self-worth by encouraging them to do the things they feel like doing. Don't treat them like invalids, especially on a good day, if they feel like getting out and doing something, do it. Don't wait. The next day, or even the next hour their physical stamina can wane.


Remember, when they get weak, can't do things you want to do, or lack the spontaneity they once had, it is the illness that has caused the change. You are the healthy one, and must not take declined invitations personally. Because the chronic illnesses, by definition last over the long haul, you may have to remind yourself of this again and again. The one who is ill is engaged in the battle head-on. They are fighting to regain health and some sense of control in their life.


People living with a chronic illness need you to be there, even if they have trouble saying it. You are an important part of their life and you play a vital part in their recovery.

"My Neurosurgeon Removed My ~ Give-A-Damn Filter"

~ DON'T ASSUME BECAUSE I LOOK WELL THAT I FEEL WELL. LOOKS CAN BE VERY DECEIVING. MANY DAYS I LOOK GREAT, BUT I FEEL TERRIBLE.


~ DON'T TELL ME YOU KNOW HOW I FEEL. NO ONE KNOWS HOW ANYONE ELSE FEELS. TWO PEOPLE WITH THE SAME DISEASE MAY FEEL TOTALLY DIFFERENT.


~ WE ALL HAVE VARYING THRESHOLDS OF PAIN AND PAIN CANNOT BE MEASURED.


~ DON'T TELL ME, "IT COULD BE WORSE." YES, IT COULD BE, BUT I DON'T NEED TO BE REMINDED.


~ DON'T DECIDE WHAT I AM CAPABLE OF DOING. ALLOW ME TO DECIDE WHAT ACTIVITIES I CAN PARTICIPATE IN. THERE MAY BE TIMES I MAKE THE WRONG DECISION, AND IF I DO, I'LL KNOW IT SOON ENOUGH.


~ DON'T BE UPSET THAT YOU CANNOT EASE MY PROBLEMS. IT WON'T DO ANY GOOD FOR BOTH OF US TO BE MISERABLE.


~ DON'T ASK ME HOW I FEEL UNLESS YOU REALLY WANT TO KNOW. YOU MAY HEAR A LOT MORE THAN YOU ARE PREPARED TO LISTEN TO.


~ DON'T ASSUME BECAUSE I DID A CERTAIN ACTIVITY YESTERDAY THAT I CAN DO IT TODAY. CHIARI  & IH ARE EVER-CHANGING.


~ DO LEARN EVERYTHING YOU CAN ABOUT THE DISEASE. THE MORE YOU KNOW, THE BETTER EQUIPPED YOU WILL BE TO KNOW WHAT TO EXPECT.


~ DO REALIZE I AM ANGRY AND FRUSTRATED WITH THE DISEASE, NOT WITH YOU.


~ DO LET ME KNOW YOU ARE AVAILABLE TO HELP ME WHEN I ASK. I'LL BE GRATEFUL.


~ DO OFFER ME LOTS OF HUGS AND ENCOURAGEMENT.


~ DO UNDERSTAND WHY I CANCEL PLANS AT THE LAST MINUTE. I NEVER KNOW FROM ONE DAY TO THE NEXT HOW I WILL FEEL.CHIARI & IH ARE LIKE THAT.


~ DO CONTINUE TO INVITE ME TO ALL THE ACTIVITIES. JUST BECAUSE I AM NOT ABLE TO BIKE RIDE ALONG WITH THE GANG DOES NOT MEAN I CAN'T MEET YOU FOR THE PICNIC AT THE END OF THE TRAIL. PLEASE LET ME DECIDE