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2009 Senate Bill 850: State Budget

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1) Re: 2009 Senate Bill 850  by poepaddy on July 7, 2009 

 I work in DCNR, any park could take a 10% hit and you would hardly notice.


There is no reason  to close parks.


Suggestions for DCNR, you could get close to 25% by.


Discontinue the lightguards in the lakes, do like Ohio, swim at your own risk.


Maybe also close pools. Saves lifeguard pays and supplies for the pool.


Cut out some summer help, and use year round help to clean bathrooms and cut grass.


Buy less supplies for a while, hold off repairing building for a while.


We don't have to have nature centers open, there are nice but we don't need them open.


Cut back on rangers, and summer clerks.


Use the year round rangers for campgrounds. Campgrounds make money.


These changes would easlly wack 25% off the budget and keep all the parks open.


Keep Yellow Creek open


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2) Re: 2009 Senate Bill 850  by gwarma on June 10, 2009 

My son started having seizures on January 17, 2005, at the age of 23.  He was driving to work and the next thing he knew he was in an ambulance.  He had crashed his truck while having a seizure.  A tumor was discovered in the center of his brain.  Several months later he had another seizure.  Surgery was done and the tumor was removed.  However, the doctors have diagnosed him with epilepsy caused by damage from the tumor.  He seems to have a seizure every six months or so (that he is sure of), but has mentioned he thinks he has had others at home.  These are grand mal seizures.  He is on medication three times a day, but obviously has these break-through seizures.  He is a very intelligent young man, yet at times his memory is very poor because of the epilepsy.  He knows things that blow my mind, yet sometimes he will have trouble with a simple task.  I have recently become familiar with the Epilepsy Foundation in Pittsburgh, PA, and see they are working on some very interesting research.  Funding for epilepsy is desparately needed.  Don't let them cut it.  Contact your local Representative, your Senator, and anyone else who could assist in keeping this funding going. 


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3) Re: 2009 Senate Bill 850  by darkmarkshark on June 8, 2009 

  I am extremely concered about Senate Bill 850 eliminating ALL funding for epilepsy services in PA. I wish I could speak with the senators about this in person on June 10, but unfortunately, because of epilepsy, I would be endangering my life by going into the capitol building. I have photosensitive seizures and flourescent lights are one of my most provocative triggers. I'm on the maximum dosage of the only two medications for my seizure type (complex partial) that I'm not allergic too, so my seizure cannot and will not be stopped with medication.


 

My epilepsy came out of remission last year. There were days I couldn't eat because even if I managed to put food in my mouth, I didn't have the energy to chew. I would sleep for over 24 hours at a time with no explanation. I was getting hallucinations and the seizure auras I had as a child returned. I went to a neurologist, who did one EEG (which I later found out was carried out improperly) and then brushed me off as making up my symptoms because I was afraid of graduating from master's program. It took me several months of constantly seeing doctors to get a diagnose, even though I told them all I was having seizures. Finally an endocrinologist referred me to another neurologist who told me that my description of what was happening, coupled with my history of epilepsy alone, was enough that the first neurologist should have immediately put my on medication. I'm still paying off several thousand dollars in medical bills from the time between I saw the first neurologist and the second one, as I tried to get a diagnosis.

 

The public is very uneducated about epilepsy as the past year has painfully shown me. Most of my friends and family abandoned me immediately upon hearing that I was having seizures. One of the most frequent things I was told by those who decided to have nothing to do with me was that it was impossible for seizures to come back after an absence of several years - even though this is very common. Very nastily, I was told by dozens of people that this re-emergence years later was proof that I was just using my past epilepsy as an excuse to get out of having to work.

 

Another common thing I've had thrown in my face quite frequently was that since I have been able to get two college degrees with straight A's I obviously have no trouble working or studying with epilepsy - everyone who said this knew the epilepsy didn't occur until the end of my last semester when all I had to do was finish my research paper to graduate.And they know my professor let me graduate because of all the extra work I put in prior to that, and not because I was able to finish the paper which was supposed to be published an in international journal - instead it couldn't even be submitted because I was too ill to finish it. I've been told by people, my own sister even, (and the social security office), that seizures can be controlled with medication. My sister says if I was taking my medication I wouldn't be having any seizures today. The truth is, if I weren't taking my medication, I'd either be dead or in a coma right now. I haven't missed a single dose since I was put on it. My brain is too important to me for me to risk permanent brain damage.

 

I've been laughed at and told I'm faking my memory problems because I haven't lost and recovered all my functions at the same time and rate, even though that would be unusual, and likely impossible given that my seizures are only in two areas of one hemisphere of my brain. I've been screamed at for faking memory problems because I can remember some things but not others and people say that if I can remember some things I have to remember all the big things that happened recently. In truth some seizures wipe out my memory of complete days. I still struggle to do simple math and division on the best of days. I looked over the papers I was writing in college last week - they are written on such a high academic level that I cannot follow the ideas in them. Still its better than last year when I couldn't read a page of a First Reader book - not everyone is as lucky to recover any part of their skills as much as I've recovered my verbal.

 

i've been by people told that I can't possibly have epilepsy because my seizures do not involve convulsions and all seizures involve convulsions, therefor I'm lying about epilepsy, and having seizures to get attention and be lazy - In truth, the most common type of seizure to have is complex partial, not the typical tv drama convulsing seizure, and depending on the severity of the seizure people can carry on a conversation with you during it. I've had multiple seizures in class as a child, while teaching, and even one severe one while speaking to a psychologist - the only reason anyone knew I was having a seizure was because I told them. But the public is grossly misinformed about what a seizure is, and if epilepsy services are not funded even those people such as teachers, expected to deal daily and protect children in schools who have frequent seizures, will have nothing to correct their ignorance.

 

Dangerously the ones who don't immediately jump to harassment and claims that I'm lying, frequently tell stories about how they saw someone swallow their tongue during a seizure when they were younger. Obviously they could have never seen that being as its impossible to swallow your tongue, but this is quite a common statement to be made when the topic of seizures comes up. I encourage you to mention someone having seizures in a group of people - almost certainly someone in the group will begin to tell a story about having seen someone swallowing their tongue. This widely held myth leads to people doing things that can result in danger, or even death, for a seizure victim - like sticking something in someone's mouth during a seizure, something that should never be done at any time, for any reason. Yet most people today, most people in Pennsylvania, are so uneducated about epilepsy and seizures, that they honestly believe you should put something in someone's mouth during a seizure


1 in 10 people will have a seizure during their lives.  More people suffer from epilepsy than with Parkinson’s disease, cerebral palsy, multiple sclerosis and muscular dystrophy combined. Epilepsy is the third most common neurological disorder after stroke and Alzheimer’s disease. 



There is only one private insurance company in the US that covers patients with a pre-existing condition of epilepsy - Blue cross. The plan has a $4,500 deductible, a $100,000 life time limit, it does not cover all epilepsy medicines so its useless for covering prescriptions of many people with epilepsy, and does not cover any namebrand medicines - even though its been well documented and extensively researched that as many 10 percent of people whose seizures are fully controlled on namebrand medicine will not be controlled on generics (and vice versa), or if they do not get the same generic every time. Policy holders are also required to come up with the money for their prescripton each month and then they will be reimbursed by blue cross after they pay for it - Currently my seizure medication is $2,534.76 each month after the discount i get for having Blue Cross - how many people do you know of that make that much extra money after living expenses each month? How many of those people that meet that criteria have a condition where they can never guarantee if they are going to be able to work from one day to the next? from one hour to the next? - if you make more than $250/month you are ineligible for any medicaid help regardless of what your medicine costs, or even if you had a seizure that put you in the hospital for 2 1/2 weeks 5 minutes after you earned a penny over $250 for that month. Surgery and VNS have already been ruled out for me as options. As have all other medication possibilities. Advocacy to make health insurance affordable and coverage available to epileptics is being completely eliminated in the state of PA by this bill - without insurance that actually covers their medication people with epilepsy have to choose between working and having access to the medicine that enables them to perform basic functions.

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