Site created on January 12, 2020

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Newest Update

Journal entry by Janice Miller

As an update, on Friday September 18, Lisa went 20 miles away to  Frederick County Health Department in Winchester where they gave her 5 more innoculations that were listed on  her required shots  by Dr. Ernesto Ayala: Tetanus/Diphtheria/Acellular Pertussis (TDaP), Hepatitis A (HepA#1), Human Papillomavirus V9 #1 (HPV9#1), Inactivated Polio Virus (IPV#1), Pneumococcal-Conjugate (Prevnar) (PCV13 #1). 

A proud and happy moment for Lisa came on September 22 when she went to exercise her right to vote early!  She was  thankful especially with the Covid-19 Pandemic that  Virginia has allowed it's citizens to vote early at the Registrar's office instead of waiting until election day which eliminated standing in line for hours so close to others.  All that was needed was her Virginia Driver's License.  Hopefully, Covid will teach us that there are new and better ways of getting  voting done safely with less exposure especially for handicapped people,  elderly citizens, and including the average citizen without the need to use an absentee ballot.  

Thanks to all of you who wished Lisa a Happy 40th Birthday!  On her actual birthday, October 20th we ordered from the delightful local Try Thia Restaurant and sat at home on the deck and enjoyed the beautiful weather and her favorite curry meal with spring rolls!  On Wednesday, October 21st, she had another favorite meal with the whole family of meatloaf, green beans, vegetable medley of summer squash, zuccini with buttered onions (her request was for Fordhook Limas - not to be found),  mashed potatoes and homemade applesauce, fresh fruit topped off with her favorite gluten free Devils Food cupcakes with her favorite homemade chocolate frosting together with a selection of ice cream.  Her evening ended with  opening her presents and  watching the video birthday wishes those of you sent who were able to figure out the program Mary set up!  Thank you so much and thank you too for the texts, emails and cards - you're the best!  You made her day!

Lisa has been truly blessed to have so many very caring people in her life who truly want the best for her.   Her Neuro Physical Therapist, Dr. Ryan Cusack who has been directing her PT care at INOVA Loudoun Hospital near Leesburg, VA is a case in point.  She has appreciated him talking directly to her and not at her plus his skill at motivating her to dig deep within herself to find the strength to do the essential and challenging exercises that help create balance in her life even when it is sooo difficult!  A special thank you also to Taylor Waters, her PT doctor friend who has been so faithful in taking her to Leesburg  all these weeks for her treatments.

During this time Lisa has not been using the rollator, but  uses a walking stick to steady herself when out of the house.  Sadly, Blue Cross/Blue Shield has notified Lisa that they will no longer pay for anymore PT for the remainder of this year so Thursday October 29th was her last Neuro PT visit until 2021. While she found the Bioness Electrical Stimulation system that was used by Dr. Cusack helpful in preventing  drop foot and stimulating the muscles needed to help lift her left hip flexor, sadly Blue Cross/Blue Shield  notified her that they feel this is not a proven therapy so they are refusing to pay for it even though it has worked for her! So, she will not have this to use until she pays the over $7,000 it costs.  Lisa will continue to use her Elliptical and do yoga and other excercises including walking to keep herself as limber as possible as she waits for the new insurance year to kick in.  In the meanwhile, she will be  reviewing and deciding which insurance will best cover her for the new year as the time has come to select her coverage for 2021.  Her insurance company suggests that she go to a higher level of insurance but she will need to review these policies to see which will be best for her.

People with disabilities are not looking for pity or excuses but just want to be treated like anyone else with respect and only want some professional  direction, guidance, and help with getting the proper equipment to assist in their rehabilitation.  The way I see it,   Lisa wants to  feel that  her life is truly worthwhile and that she is able to contribute something to make the world a better place.   The purpose of life is not to seek happiness for yourself or to see how much money you can accumulate or how many material things you can own.  Ralph Waldo Emerson once said, “The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.”  May we all find this to be true in our own lives!

Lisa has modified her daily routine and will need to continue to modify what she has been doing and feels the time has now come to seek disability as she finds it  impossible to do the things she once did.  She continues to work diligently on her physical therapy and has added some small apparatuses and appliances to her daily workout routine in order to prevent her from becoming wheelchair bound.   Her illness and its progression or regression remains a determining factor, of course in her daily activities.  Stress is her worst enemy and her impending divorce sadly has added unnecessarily  to her stress level.

 Lisa's contribution to the study of  HDLS or CSF1R related Leukoencelphlopathy by bravely  volunteering to be a pioneer as  one of the first patients to undergo a BMT for this illness with hopes that it will slow it's progression, having to undergo chemo and full body radiation, then traveling thru this long challenging journey that has involved so many unknowns, and willingly sharing her experience with others with the hope to find major donors who will help fund the research for a cure for this rare disease.  There is so much to learn as new research is being done including educating neurologists,  doctors, hospitals, and the general public on what to look for is also a part of the process.   Dr. Zbigniew Wszolek. Lisa's Neurologist at Mayo,  believes that there are  many who are suffering from this illness or similar illnesses who have been misdiagnosed or are just seeing changes in themselves but not knowing who to go to or what to do.  Hopefully patients can locate a knowledgeable  doctor and Neurologist who can help find some answers.

 On October 29th, Lisa went this time about 20 miles northeast to another nearby county - Clarke County Health Department where they had her next 6 additional required innoculations;  the second of the series of Hepatitis B #2 (Hep B#2) Haemophilus Influenzae type B  (Hib#2), Human Papilomavirus (HPV9#2),   Inactivated Polio Virus ( IPV #2), Meningoccal (MCV4#2, and Pneumoccal conjugate (Prevnar) (PCV13#2).  Her next shots will  be in December.  At this point, she is scheduled to return to Mayo on December 9th.  A decision will need to be made soon whether or not to reschedule this to the new year in hopes that the Pandemic will slow and the trip  can be made without the  concern about contracting Covid-19.   


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