Rita Skold Benefit Fund

Rita has been diagnosed with a very rare, degenerative, fatal, brain disease called CJD, only around 300 people in the U.S. get this disease per year. Her family is working alongside the CJD foundation to bring awareness to this disease for future patients with this diagnoses. Unfortunately, there is no cure and people with the disease, in most cases, are given less than six months to live. Her family is raising money for mounting medical costs associated with the disease and also for her and her husband's loss of income and financial burden during her battle. Here is Rita's story.

Rita Skold was a creative, vibrant, caring and energetic hairdresser and beauty consultant who lived with her husband, Steve and their dog, Pippi and cat, Coco. She has two daughters, Aimee and Erin and five grandchildren all together; family and career were her whole world until over the course of a few short weeks, all of that changed . At the beginning of August, 2014, Rita started complaining that her eyesight was blurry and she was experiencing vertigo, which she had dealt with in the past, so it wasn't too alarming at the time. Within that first week of August, she went into the eye clinic to get a new prescription and was hoping the new glasses would help with her symptoms. The following week, she started to experience some dizzy spells and started to display some forgetful behavior once in a while and her family and friends started to wonder a little about what was going on? Her family started to question whether she had seen a doctor for the vertigo she was still having and she just kept insisting that when she got her new glasses everything would be better and assured everyone she was fine! Then, the third week of August rolled around and by that Monday, she was starting to say some very odd stories and said she was feeling sick and was experiencing some strange symptoms and headaches. She was starting to display some out of the normal behavior and personality changes. She wasn't able to work or drive anymore because she didn't feel well enough to. Her family started to worry. They insisted she see a doctor and her husband daughter, Aimee, went to the first appointment with her. The doctor asked about symptoms and ordered a round of blood tests. By the follow up visit, Rita had started to change drastically! Her memory was fading away and the symptoms seemed to be getting worse. Her whole demeanor had changed, she was walking with a hunch and she had lost that once lively pep in her step! She didn't have much of an appetite and had lost twenty five pounds in just those few short weeks. She had to be urged to get out of bed because she was so fatigued she couldn't match her own clothes anymore as well as apply her makeup or style her hair which to her was always something she took a lot of care and concern for. She had no interest to call anyone or talk to her daughters and grandkids on the phone, which she usually called multiple times a day. She wasn't returning phone calls, texts or answering posts on FB, which is not like her either as she was always very social and loved to talk to everyone and share her life with others. It seemed like she lost interest in everything she was once passionate about. That once outgoing wife, mother and grandma was slipping away right before her family's eyes. The doctor found no results with her blood tests and sent her to a neurologist the following week. Meanwhile, her family was starting to get extremely worried for her as they noticed the symptoms persist. While at the neurologist, she interviewed Rita and did a round of cognitive tests on her as well as reflex tests. It was there, in the office, that her family realized that Rita couldn't read anymore; despite her new glasses, she couldn't write and her left side wasn't responding to the reflex tests. She was also answering the questions with many memory problems and sometimes didn't even know the answer or made up one she believed was right. The neurologist diagnosed her with delirium with an unknown cause and ordered another round of blood tests and a spinal tap to test for any infectious diseases of the brain. That Friday, Rita had her spinal tap and meanwhile the neurologist ordered an additional eight blood tests. The neurologist was suspecting this was a very rare case of something infectious but there were uncertainties there too. Her test results would take up to two weeks! That weekend, Rita started to develop anxiety attacks and some more hallucinations. Her family had started to worry and thought about taking her to the ER but was advised that it wasn't urgent yet by the doctor! In the meantime, her daughters were helping their Dad take turns watching her in the later part of the day while their Dad, Rita's husband Steve, went to work. The family members were all starting to worry more as she seemed to keep slipping further into this delirium. At the follow up visit on Monday, Rita had her first EEG and the neurologist read the first results as abnormal and ordered a prescription of anti-seizure meds for Rita but said they would have to come back in a week to find out the reason and the rest of the results. Rita's family left the clinic discouraged and started to wonder if they should seek other opinions as this seemed so much more urgent than her neurologist was taking it. Her family started to call other clinics such as the U of M and Mayo but they were all at least three weeks out for appointments even with a referral! That afternoon, Rita went to her daughter, Aimee's, house while her husband went into work down the road and Rita had a major psychosis attack. She was panicked and her daughter was scared and unable to calm her. She called her Dad and had him come and stay with her and he was able to calm her down and relax. Meanwhile, her daughter, Erin, contacted the on-call neurologist and asked if they should take her in to the ER and he advised to do so if it happened again that night or got worse. Sure enough, later that night, she started to panic and wouldn't go into the house. Her husband struggled to get her to go into the house and she refused, wandering down the road and at that point, Steve decided to take her to Mercy Hospital where she was hooked up to an EEG and they discovered that she was having nonstop seizures! That was the reason for all of the memory loss and all of the other symptoms. She was admitted into a room at Mercy the next morning and the neurologist started to try to control the seizures and get her to rest. She was exhausted since her body had not been fully resting at all in the last month as the neurologist figured as soon as the symptoms had started that's when she was probably having seizures way back in early August. The neurologist found out that her front, right lobe was being affected by the seizures, so that was why her left side was weak and had no reflexes. Rita was exhausted and slept most of the first day. Then, the following day the physical therapist came in to inform her family of how much recovery time she would need as her left side nerves were all affected by these seizures and would need time to heal. Also, she would need rehab to get back all of her memory and abilities such as reading and writing. It was going to be a long road ahead and they started to make plans to send her to Sister Kenny on that Friday to start her recovery. Her family was happy to have a plan in action but still had no results as to why this was happening to her. They were waiting on the diagnosis. Then, that Thursday, her family started to notice her foot fidgeting again and she seemed restless so they inquired and got her hooked up to another EEG that Friday morning. Rita was still having seizures and the neurologist decided that the best course of action was to send her to Abbott where she could be monitored 24/7 by th down there and hopefully get the seizures under control and figure out what was causing them. Rita was still weak and having memory loss and by the time she left Mercy hospital, she was still having the same symptoms as when she arrived that Monday.   Rita was transferred to Abbott and put into a medically induced coma to while the doctors tried to get her siezures under control and figure out the cause and diagnoses.  She was in an induced coma for four weeks while they tested her and had her hooked up to a constant EEG and given multiple MRIs.  She had no change while the doctors upped her meds to five total. They decided to start to wean her down one by one and attempt to figure out the next step.  Meanwhile, they decided to narrow down the possible causes to either Hashimoto's Encephalitis or CJD.   The outcomes of both diseases were very different paths with Hashimotos being curable and CJD not.  Her family was confused by the two very different possiblities.   They decided to put a traech in her since she had been on the ventilator for so many weeks and give her a feeding tube.  Then, the y proceeded to put her on a Prednisone treatment in hopes to treat possible Hashimoto's Encephalitis and aggressively put her on the steroids for two weeks.  Meanwhile,  she developed a pulminary embolism and pneumonia with a fever in the ICU.   She also developed a hematoma in the abdomen after being put on her blood thinners.  The doctors decided while on the steroid treatment they would have her transferred to Bethesda hospital to keep her in an ICU type setting with all the care but to let her be a little more comfortable for the time being and they could handle her traech and feeding tube also.  She was at Bethesda for three days and her hemoglobin dropped dangerously low so she required a blood transfusion.   Then two days later , the doctors transferred her back to Abbott ICU.  The next day, she required another blood transfusion due to the drop in her hemoglobin again.  Also, she was having abnormal brain activity again and they determined it was brain "bursts" every two seconds.  On October 9th, 2014 Rita was diagnosed with Sporadic CJD.  Her family was devastated .  She had months, maybe days to live?  She is currently in the ICU at Abbott being moved to hospice care within days.  Her brain has regressed to less than an infants understanding.   CJD is very rare, affecting only about 300 people in the U.S. a year.   CJD affects the brain in that it is a prion protien in the brain that starts folding abnormally and continues to turn the brain into a sponge-type state and eventually coma and death.   The person becomes blind and mute with myoclonus twitches.   Rita's family hasn't been able to communicate with her for five weeks now and she is unable to move, talk, swallow, and she is mostly sleeping lately.  She is in the end stages of the disease.  We are trying to raise money for her husbands current financial need as he has used up all extra money and vacation pay to be at his wife's side for six weeks now.  Along with the costs of losing her income and half of his own pay.  He has been going between hospitals and work everyday and now needs to be with her in her final stages.   He will also need financial help with out of pocket medical costs beyond what insurance will cover.  Thank you for all the love and support. We appreciate it.

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Organizer

Erin Skold Prest 
Organizer
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