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At this time the Sinemet has become unpredictable. When it is not working (which is most of the day), she is either writhing with pain and/or unable to walk, talk, or move. At this point, Stem Cell therapy using her own stem cells is her best hope to regain functionality. Unfortunately, this is very expensive. Mary’s whole life has been about helping others; now she needs help. Through the long ordeal over the years, Mary has remained steadfast in her hope for better quality of life. She often has said to others and believes for herself “Miracles do happen.”
The last 4 years have been incredibly challenging for the Orr’s – emotionally, physically, and financially. I, her husband Michael, have had to reduce my teaching hours to help Mary throughout the day and night, resulting in a significant decrease in income. It is estimated that the StemGenex stem cell therapy and follow-up care will be in excess of $25,000. Costs will include the procedure (including hotel fees before, during, and after the treatment), hyperbaric oxygen treatments afterwards, and much more; none of which is covered by insurance.
To help with the financial burden of Mary’s uninsured expenses, a fundraising campaign in her honor has been established with Help Hope Live, a trusted non-profit organization that has been providing community-based fundraising guidance to patients and their families for more than 30 years. All donations are tax-deductible to the full extent allowed by law, are held by Help Hope Live in the Southwest Stem Cell Transplant Fund, and are administered by Help Hope Live for transplant-related expenses only. Please consider a contribution.
Thank you for your good wishes, prayers, and generosity.
Many Blessings to all.
Michael Orr, Mary’s husband
Here we are 1 month later. Mary still struggles with sleep. She had a UTI about a month ago, and the antibiotics caused problems with her medications, resulting in increased, constant chronic pain throughout her whole body. Her insomnia has gotten worse again after seeing some slight improvement before the antibiotics.
Thanks for all the prayers and support. We greatly appreciate it.
Blessing All.
Michael & Mary Orr
Hi Everyone. Sorry for taking so long with updating. Mary is currently fighting a UTI that started up last Wednesday, the 13th. We saw the NP in the Doctor's office, and she prescribed Bactrim, especially since Mary can't take Cipro due to bad reactions to it in the past.
In doing some digging on the internet, we found that Bactrim inhibits an enzyme that converts folate into a methylated version. In essence it slows down the methylation process, which is not good since Mary is already a slow methylator as it is. We have noticed a decrease in the effectiveness of the Sinemet (less on time) and increased dyskinesias (wild, involuntary movements) as a result of taking the necessary antibiotics.
Before this, she was starting to see minor improvements. She was able to roll over in bed and get up to go to the bathroom unassisted in the middle of the night. Hopefully these and other improvements will be regained after the course of antibiotics is over.
This whole process has been challenging, but we are hopeful that Mary's health will improve.
Many Blessings to All
Sorry for taking so long to update. Mary completed the 40 hyperbaric oxygen therapy treatments near the end of June. From those treatments, Mary has been experiencing continual heavy metal detox during and ever since, making things challenging. Because of the heavy metal detox, sleep is very difficult. She also experiences a lot of muscle pain and weakness, making it difficult to leave the house.
At the three month and a half months now (15 weeks), we have not noticed any significant improvements in her symptoms. We are hopeful that she will gain functionality in the very near future. The doctor said that it could take 3 to 6 months before we notice any changes, and with maximum benefit at the 1 year point. We have more to go.
Many thanks for all your prayers and the financial gifts.
Peace & Light,
Michael
It has been a month since the stem cell procedure. At this time, we are not seeing any differences yet that can be attributed to the stem cells.
Mary has been undergoing hyperbaric oxygen therapy treatments ever since the stem cell procedure, and she has completed 16 out of 40 treatments. She has been noticing signs of detoxing from the hyperbaric treatments. Sleep is still broken, but she is getting 6 - 7.5 hours in chunks of 2.75 hours or less.
Thanks for your generous donations and prayers. God Bless.
The stem cell therapy went off without a hitch. Many thanks to the Stem Genex staff & Dr. Lallande. Great people that really care about their patients.
Started the round of 40 hyperbaric oxygen therapy treatments this morning. Taking it one day at a time with hopes for positive outcomes.
Again, many thanks to those that have donated. We greatly appreciate your efforts. - Michael (Mary's husband).
Met with the Dr. at StemGenex this afternoon. Mary & I are impressed. We report tomorrow morning at 6:15 AM for stem cell harvesting with activation & implantation later in the day. We are excited.
Thanks for all your support & prayers.
Hi Everyone. Again thanks for your donations.
Mary has been receiving hyperbaric oxygen therapy treatments over the last 5 weeks. Your donations have been covering the cost of 1-2 treatments each week to help strengthen Mary for the stem cell treatment.
After each treatment, Mary has more energy! She also sleeps better for a day or so! The evening of the treatment the dystonia (severe muscle cramp in the left leg) is reduced quite a bit; this is what helps with the sleep as she doesn't wake up as much with leg pain. Also the dyskinesias (involuntary movements which are a side effect of the medication) are not as brutal for a day or so.
And these small changes are from 1-2 treatments each week. After the stem cell therapy, she will be receiving 40 treatments, 5 a week for 8 weeks. We are looking forward to even more and greater changes.
And again we couldn't do it without your help and support. Thank you so much!
"I know that we have thanked all of you for your generous donations. But I want to thank you again so, so much because I know that this treatment will improve my quality of life." - Mary
The flu that Mary caught earlier this month has left her feeling very weak. Regaining what strength that she did have has been a bit challenging.
On a positive note, Lauren Solomon (the Wellness Coach - Parkinson's Wellness Fund) had recommended using topical magnesium (spray) over the dystonia (muscle spasms) in the leg that she gets in the evening and that wake her up in the middle of the night. Just a few sprays rubbed into the area has eased the spasms (dystonia) to the point where she can get back to sleep for another hour or 2.
Mary started the hyperbairc oxygen therapy treatments. She has had 4 treatments in the last 2 weeks. She has noticed less wheezing, less sinus congestion, and her eyesight is not as blurry. With regards to the PD, the nighttime tremor that wakes her up in the middle of the night is less intense. Her intent is to do 10 treatments up front to strengthen her body to put her body in a better place for when she does receive the stem cell therapy, funding permitting.
Many Blessings to all. Michael & Mary
Mary caught what started out like a head cold and morphed into something like a low-grade flu (temp, aches, etc). The last time she caught the flu (full-blown) back in 2008, the PD went from mild to severe.
Right now the meds are even more unpredicatble due to the inflammation associated with elevated body temperature. The problem with taking Tylenol is that it depletes glutathione which is necessary to counteract the resulting by-products of Sinemet which are toxic. So the Tylenol makes the Parkinson's worse.
Ibuprofen helps with the temperature, but Mary has a very sensitive stomach and ibuprofen causes her problems. Plus in the long run, ibuprofen is not good for the heart.
Thus another round of challenges. We are hanging int here and appreciate all the support from everyone. Again Thanks.
Michael
We want to thank The Unity Center (www.theunitycenter.net) for their help.
Many thanks go out to the Parkinson's Wellness Fund for their support. The PWF provided us with a grant to help offset the expense of the many supplements that Mary needs. Without these supplements, Mary would be even more incapacitated that she currently is.
http://parkinsonswellnessfund.org
Many thanks go out to the all the people that have donated so far. Your contributions are helping us to meet our goal so that Mary can have a better Quality of Life.
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Thank you for your service, God Bless you and your family.
Kristin Dalrymple
We're with you! God bless!
Rob Rodriguez & family
Thank you for your service. I'm praying for continued strength and a better quality of life.
Tonya Brye
Love and blessings from Mom
Catherine Meyer
Love from your Mom with prayers, hope and inspiration.
I love you!
GramC Mom
Good morning with love, blessings, hope and prayers from Mom C
Catherine Meyer
Sending lots of good energy your way!
Don Phillips
Thank you for your email. Ayane and I will be praying for you.
Lots of love
Ava
Hi Mary - You have my first of several donations and just sent in Linda's for $100. We love you!
Elaine and Linda
Prayers to you. I hope that enough money is raised so that Mary gets the help she needs.
John Setzer
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Mary M Orr
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
Donor preference is important to us. Please specify in writing if you wish for your name or donation amount to be kept private.
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