Hope for Donna Hamm
Donation protected
My dear friend and sister, Donna Hamm, was always the super-organized one – the expert multi-tasker - neat as a pin, boundless energy, a devoted wife to Jeff (the kindest jokester you’ll ever meet), a compassionate and skilled speech language pathologist working full-time and putting her whole heart, always, into her work. She was the type of person who could do 10 things at once and do all of them well. Any time you asked her for help, she was there.
So, when we started noticing that she was having challenges with multi-tasking back in 2016, we were concerned. We chalked it up to being too busy, too stressed – having to juggle too many things. But, then she began having trouble looking at the computer screens at work. It was taking longer to complete patient chart notes and organize schedules. She asked her doctor about it and she went to a neurologist for a consult.
The neurologist did a thorough exam. He said, “This is atypical. I want you to see a memory specialist at DENT.” He ordered a PET scan of her brain and we went for a consult at DENT. The doctor said that the scan showed Alzheimer’s Disease. This was early in 2017 and Donna was only 51. I will never forget that day sitting in the exam room with her and Jeff. The doctor delivered the news like it was just another day at the office for him. For us, it was devastating. Donna nearly fainted. Then he went on to say the phrase that was even more painful than the news of the rough diagnosis – “There is nothing we can do for you.”
There is nothing we can do for you – hard words to swallow. The doctor offered one of 3 meds to try but said that none of the meds cure the problem and that they might, at best, delay the process by a few months. I asked them to delve into how this could happen – work her up for a metabolic problem, toxicity, infection – something – ANYTHING - to find that could be a treatable cause. He looked blank and said they had a social worker in their practice that we could meet with to help. That was a grim day.
Instead of doing nothing, I took to research. I devoured study after study about Alzheimer’s Disease and dementia. We got a referral to an infection control doctor. He was brilliant. Really, he reminded me of Einstein. He spent 90 minutes at our first visit evaluating Donna and said, “This is not Alzheimer’s. I don’t know what it is, yet, but we will figure it out.” We had hope.
He tried. Oh, how he tried. He ordered tests I have never heard of in my 30 years working in the health profession. Dozens of blood tests, spinal tap, cultures. He started a supplement regimen. When all of the tests came back showing nothing conclusive, he announced that Donna had a mitochondrial illness. We bought books about mitochondrial disease and digested all the info. He put her on an intensive supplement regimen. She followed his instructions for months but made no improvements. Actually, she was slowly declining. This plan was not working. He had no other recommendation and neither did the primary doctor. We prayed and prayed for God to give us discernment, wisdom, direction about what to do next.
I learned about the work of Dr. Terry Wahls as my son was having some success treating his MS by following her program. I saw an interview that Dr. Wahls had with Dr. Dale Bredesen – a functional neurologist – who developed an entire evaluation and treatment program for Alzheimers/dementia. The timing was impeccable and it seemed an answer to prayer. His program was called RECODE. The protocol made sense, and was an option that seemed wise at the time, given that nothing else was working. We had hope but the down side was the cost.
When you have a medical condition that baffles mainstream medical care, and you are declining - you search and search for answers. You are fighting for your life. Most of the options you find outside of mainstream are costly – very costly. Jeff and Donna decided to start the program under the direction of a RECODE-trained MD in early 2018. The doctor said what we had heard before – “This is not Alzheimers.”
The doctor discovered 2 important issues – Donna had dangerously high levels of mercury and lead in her system, and she had extremely high levels of mold. Donna participated in the program for 18 months – most of it out-of-pocket and exorbitant in cost. But, what else do you do when it seems the only option? Sadly, Donna continued to struggle. Early on in the program, she had to leave her job that she loved. She wasn’t just an amazingly-skilled speech therapist - she was a compassionate one. I’ve seen her with her patients – just extraordinary. How hard it was for her to leave her job!
But, then, it got harder. She had to give up driving. Now, my energizer-bunny sister couldn’t just hop in her car and go do things. That was a bitter change. Her visual perception became more and more challenging. Writing became increasingly difficult. She had to give up lectoring at church - another difficult loss – because reading became too hard. Following a recipe was nearly impossible. This summer, Jeff and Donna left the RECODE program that had initially promised such hope. She had no other options.
Feeling defeated, I found a neurologist in Rochester to re-connect with mainstream medicine in order to get basic help with the process of this horrific progressive neurological condition. We had to wait months to get in. During those months, off all treatment, Donna declined. Manipulating buttons and zippers became challenging. She experienced increasing memory issues. My dear sister, who helped innumerable people deal with word-finding problems when she worked on the rehab floor at ECMC, was experiencing her own word-finding issues that were worsening. Simple things that we do every day – using a cell phone, reading a clock to know what time it is, ordering from a menu, filling an ice cube tray, setting a table, dialing a phone – became impossible.
While waiting for the appointment, I searched and found a doctor here in WNY who is skilled in environmental health. She is, again, outside of mainstream practice. The out-of-pocket costs are, again, high. A dear family member offered to help with the cost. Donna started a month ago. Within the first 2 weeks, $10,000 was gone. This doctor determined that Donna had Lyme Disease (specifically – neuroborreliosis – or Lyme bacteria in the central nervous system), Rickettsia, mold toxicity, and her lead levels had become dangerously high again. She said that Donna was a seriously ill woman and ordered multiple treatments. It is a joy to have a glimmer of hope again but feels impossible to manage the financial aspect of this new protocol.
The testing and treatment protocols in mainstream medical care for her diagnoses were grossly inadequate and hopeless, forcing us to seek options elsewhere which are private-pay. I dream of a day when Donna is able to tell her story, and I hope that she can tell it to the politicians, medical, and health insurance professionals making decisions about testing and treatment protocols for her diagnoses. Perhaps she can be a voice to change things. We hope. Change is desperately needed.
But, right now, she continues to fight. $53,000 has been spent on the battle for her health since 2017 and the financial strain is feeling desperate. We are humbly asking for your help with Donna’s treatment. We don’t know where it will take her. There are glimmers of hope. After the first few days of antibiotics, she is doing a little better getting dressed. She looked at a clock and knew the time, which was amazing! Her doctor is proposing monthly nasal-injection stem cell treatments (live-birth umbilical cord and placenta-derived) which cost $3,000.00 each. Those treatments could go on for at least 6 months or more, depending on her response. If you are not able to contribute financially (and even if you are), please keep Donna and Jeff in your prayers. Prayers have been, and will continue to be, our lifeline.
When funds are withdrawn from the GoFundMe account, they are being directly deposited into Jeff and Donna's checking account. Jeff is using the funds to pay for the appointments at their doctor. They go to the doctor daily, Monday through Friday. They are often there all day long. Donna gets different treatments there including IV medications. These appointments are all private pay. Thank you, everyone, for all you do to help.
Before closing, I want to say a word about Donna’s husband, Jeff. He has the patience of a saint and his faithfulness and perseverance in prayer has been unbelievable. He truly is a blessing. He has given 150% and I know he gets beyond bone-tired. Then, the next day, he is at it again – trying so hard to help Donna – getting her to daily appointments, juggling medications, supplements, IVs, etc. Please pray for strength for both of them. I will keep you posted on her progress. Thank you for helping us to have hope, and may God bless us all.
So, when we started noticing that she was having challenges with multi-tasking back in 2016, we were concerned. We chalked it up to being too busy, too stressed – having to juggle too many things. But, then she began having trouble looking at the computer screens at work. It was taking longer to complete patient chart notes and organize schedules. She asked her doctor about it and she went to a neurologist for a consult.
The neurologist did a thorough exam. He said, “This is atypical. I want you to see a memory specialist at DENT.” He ordered a PET scan of her brain and we went for a consult at DENT. The doctor said that the scan showed Alzheimer’s Disease. This was early in 2017 and Donna was only 51. I will never forget that day sitting in the exam room with her and Jeff. The doctor delivered the news like it was just another day at the office for him. For us, it was devastating. Donna nearly fainted. Then he went on to say the phrase that was even more painful than the news of the rough diagnosis – “There is nothing we can do for you.”
There is nothing we can do for you – hard words to swallow. The doctor offered one of 3 meds to try but said that none of the meds cure the problem and that they might, at best, delay the process by a few months. I asked them to delve into how this could happen – work her up for a metabolic problem, toxicity, infection – something – ANYTHING - to find that could be a treatable cause. He looked blank and said they had a social worker in their practice that we could meet with to help. That was a grim day.
Instead of doing nothing, I took to research. I devoured study after study about Alzheimer’s Disease and dementia. We got a referral to an infection control doctor. He was brilliant. Really, he reminded me of Einstein. He spent 90 minutes at our first visit evaluating Donna and said, “This is not Alzheimer’s. I don’t know what it is, yet, but we will figure it out.” We had hope.
He tried. Oh, how he tried. He ordered tests I have never heard of in my 30 years working in the health profession. Dozens of blood tests, spinal tap, cultures. He started a supplement regimen. When all of the tests came back showing nothing conclusive, he announced that Donna had a mitochondrial illness. We bought books about mitochondrial disease and digested all the info. He put her on an intensive supplement regimen. She followed his instructions for months but made no improvements. Actually, she was slowly declining. This plan was not working. He had no other recommendation and neither did the primary doctor. We prayed and prayed for God to give us discernment, wisdom, direction about what to do next.
I learned about the work of Dr. Terry Wahls as my son was having some success treating his MS by following her program. I saw an interview that Dr. Wahls had with Dr. Dale Bredesen – a functional neurologist – who developed an entire evaluation and treatment program for Alzheimers/dementia. The timing was impeccable and it seemed an answer to prayer. His program was called RECODE. The protocol made sense, and was an option that seemed wise at the time, given that nothing else was working. We had hope but the down side was the cost.
When you have a medical condition that baffles mainstream medical care, and you are declining - you search and search for answers. You are fighting for your life. Most of the options you find outside of mainstream are costly – very costly. Jeff and Donna decided to start the program under the direction of a RECODE-trained MD in early 2018. The doctor said what we had heard before – “This is not Alzheimers.”
The doctor discovered 2 important issues – Donna had dangerously high levels of mercury and lead in her system, and she had extremely high levels of mold. Donna participated in the program for 18 months – most of it out-of-pocket and exorbitant in cost. But, what else do you do when it seems the only option? Sadly, Donna continued to struggle. Early on in the program, she had to leave her job that she loved. She wasn’t just an amazingly-skilled speech therapist - she was a compassionate one. I’ve seen her with her patients – just extraordinary. How hard it was for her to leave her job!
But, then, it got harder. She had to give up driving. Now, my energizer-bunny sister couldn’t just hop in her car and go do things. That was a bitter change. Her visual perception became more and more challenging. Writing became increasingly difficult. She had to give up lectoring at church - another difficult loss – because reading became too hard. Following a recipe was nearly impossible. This summer, Jeff and Donna left the RECODE program that had initially promised such hope. She had no other options.
Feeling defeated, I found a neurologist in Rochester to re-connect with mainstream medicine in order to get basic help with the process of this horrific progressive neurological condition. We had to wait months to get in. During those months, off all treatment, Donna declined. Manipulating buttons and zippers became challenging. She experienced increasing memory issues. My dear sister, who helped innumerable people deal with word-finding problems when she worked on the rehab floor at ECMC, was experiencing her own word-finding issues that were worsening. Simple things that we do every day – using a cell phone, reading a clock to know what time it is, ordering from a menu, filling an ice cube tray, setting a table, dialing a phone – became impossible.
While waiting for the appointment, I searched and found a doctor here in WNY who is skilled in environmental health. She is, again, outside of mainstream practice. The out-of-pocket costs are, again, high. A dear family member offered to help with the cost. Donna started a month ago. Within the first 2 weeks, $10,000 was gone. This doctor determined that Donna had Lyme Disease (specifically – neuroborreliosis – or Lyme bacteria in the central nervous system), Rickettsia, mold toxicity, and her lead levels had become dangerously high again. She said that Donna was a seriously ill woman and ordered multiple treatments. It is a joy to have a glimmer of hope again but feels impossible to manage the financial aspect of this new protocol.
The testing and treatment protocols in mainstream medical care for her diagnoses were grossly inadequate and hopeless, forcing us to seek options elsewhere which are private-pay. I dream of a day when Donna is able to tell her story, and I hope that she can tell it to the politicians, medical, and health insurance professionals making decisions about testing and treatment protocols for her diagnoses. Perhaps she can be a voice to change things. We hope. Change is desperately needed.
But, right now, she continues to fight. $53,000 has been spent on the battle for her health since 2017 and the financial strain is feeling desperate. We are humbly asking for your help with Donna’s treatment. We don’t know where it will take her. There are glimmers of hope. After the first few days of antibiotics, she is doing a little better getting dressed. She looked at a clock and knew the time, which was amazing! Her doctor is proposing monthly nasal-injection stem cell treatments (live-birth umbilical cord and placenta-derived) which cost $3,000.00 each. Those treatments could go on for at least 6 months or more, depending on her response. If you are not able to contribute financially (and even if you are), please keep Donna and Jeff in your prayers. Prayers have been, and will continue to be, our lifeline.
When funds are withdrawn from the GoFundMe account, they are being directly deposited into Jeff and Donna's checking account. Jeff is using the funds to pay for the appointments at their doctor. They go to the doctor daily, Monday through Friday. They are often there all day long. Donna gets different treatments there including IV medications. These appointments are all private pay. Thank you, everyone, for all you do to help.
Before closing, I want to say a word about Donna’s husband, Jeff. He has the patience of a saint and his faithfulness and perseverance in prayer has been unbelievable. He truly is a blessing. He has given 150% and I know he gets beyond bone-tired. Then, the next day, he is at it again – trying so hard to help Donna – getting her to daily appointments, juggling medications, supplements, IVs, etc. Please pray for strength for both of them. I will keep you posted on her progress. Thank you for helping us to have hope, and may God bless us all.
Organizer and beneficiary
Margaret Parker Dollas
Organizer
Alden, NY
Jeffery Hamm
Beneficiary