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Gil Williams
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Gil Williams
MemberApril 23, 2024 at 2:36 pm in reply to: What research are you most excited about right now?Please excuse the long read. This research seems to show real promise. The down side is it will not be available in the US for at least 3 years.
Preface
We have just completed treating our Cohort #23 in the British Virgin Islands and have surpassed 150 Parkinson’s disease sufferers who have been dosed with FGF-1. While 150 Parkinson’s disease patients are still a modest number of people treated, I am very pleased with the improvements we have seen in our patients, and without any serious adverse events (some temporary headaches reported). Next month, May 2024, will be the two-year anniversary of the first humans we dosed with FGF-1. With two years of data, we are now able to start collecting long-term data from our first test subjects. In my opinion, the overall improvements have been excellent for most patients. The dosing Protocol #17, which added additional dosing of FGF-1 at 6 and 12 months, has demonstrated enhanced improvements in the test subjects. We have learned a lot from our medical research study participants, and I believe we are heading in the right direction to obtaining a return of normal brain and movement functions for Parkinson’s disease sufferers. When we started two years ago, the primary benefit we were seeking was an improvement in movement disorders, such as tremors. While that objective has been well-addressed, the part I am finding most amazing is the return of other brain functions, including cognition and memory, and reductions in anxiety, depression, and apathy. We had no idea about these potential areas of mental enhancement. When we worked with animals, the animals in the experiments could not tell us what a human can tell us, like, “I remember things now”.
Vika Montano, Dr. Jacobs, and I, are redosing ourselves with FGF-1 now. We have no movement issues and no known brain issues; however, we believe the neuroprotective functions of FGF-1 could defer any future neurological issues and since the medicine appears to be very safe, why not? It would be a shame not to be able to remember my life, the adventures, the love, the losses, and the journey.
Two items I would like to address in this April Update are:
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Deep Brain Stimulation vs FGF-1 treatment for Parkinson’s Disease
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FGF-1 to Treat Lung Damage.
Deep Brain Stimulation vs FGF-1 treatment for Parkinson’s Disease
We have been working on FGF-1 to treat Parkinson’s disease for almost 6 years. During that time, I have been asked by hundreds of patients and their caregivers, “What does Dan Montano think about deep brain stimulation (DBS)?” For six years, I have always answered that I can only speak about FGF-1, and I cannot address DBS, however I recommended that they look deep into DBS before they do anything. Now with two years’ worth of results on FGF-1 enhancing the health of Parkinson’s disease sufferers and having, I believe, more than 100,000 readers of our Monthly Update, I realize I must share my opinion on DBS. People are coming to me and stating that their neurologists are pushing them to have DBS surgery and asking me, “What should I do?”. I am not a medical doctor, nor a neurologist. I am just an average person who has looked at the data and I have formed my own opinion.
I have assembled and read published data on DBS and compared that to what I have seen with our 150 Parkinson’s disease test subjects. At the end of this section is a link to a chart which I have prepared, which gives a general comparison between FGF-1 and deep brain stimulation. Also, I have attached additional information as a second addendum which goes into more specifics about the comparison between DBS and FGF-1.
Summary: DBS v. FGF-1
Deep brain stimulation (DBS) requires a surgical procedure: a hole is drilled into your skull and then electrical wires are stuck down inside your brain to then send electrical currents through your brain to hopefully address movement issues. Side effects can include infections, stroke, mood disorders, sepsis, and more. We have had approximately 10 people with DBS participate in our Medical Research Studies to receive FGF-1, because the DBS was not giving them satisfactory results. In fact, some of those DBS patients have shown the best recovery with the FGF-1 treatment. We have heard horror story after horror story about the DBS treatment.
The FGF-1 treatment is introduced painlessly up the nose, no skin is broken and there has not been one reported serious adverse event from FGF-1 in the brain in the medical research studies to date. While DBS has shown it can, for a period of time, improve motor skills, there is no mention of improved brain functions, such as cognition or memory. No one claims deep brain stimulation will allow the brain to heal itself back to normal. However, with FGF-1, that is exactly what we believe, because FGF-1 can regenerate brain blood vessels and neurons and return brain function back to normal.
A gentleman a few weeks ago called me and asked, “Dan, my wife just got tested to see if she is a candidate for DBS. Dan, I am scared that it is a dangerous treatment and what should I do?” Because of him I am writing my opinion and sharing with the world, “Why not try FGF-1 before you do DBS?”. As mentioned above, to date, taking FGF-1 has shown no risk and it is painless with no skin being broken. I told him, “If FGF-1 does not help your wife then you can always get the surgery to drill a hole in her skull and stuff wires inside her brain to see if electrocuting her brain helps her for a short period of time”. He told me his wife has depression, confusion, memory issues and mood issues. I told him I can find nothing which shows DBS can address those issues. I told him to read our patients’ comments on their improvements in depression, mood, memory, and cognition. Why run the risk of brain infections, stroke and more when FGF-1 is providing a safer and healthier pathway as shown in our medical research studies?
Read My Opinion Paper: FGF-1 v. DBS here: https://www.pd-studies.com/dbs.
Lung Damage: Can FGF-1 Treat It?
It is reported that the #3 leading cause of death in the world are respiratory diseases (heart disease is the #1 killer followed by cancer at #2). Billions of people breathe in toxins, bacteria, viruses, fungi, allergens and more, so it is not surprising the lungs are under constant assault at almost every moment of every day. With the long-term damaging results of COVID-19 becoming better known, many experts predict lung damage will be much more prevalent in the future. To a person like myself, who has allergies, breathing sometimes can be a struggle. It always amazes me how I do not think about breathing, until I am having difficulties breathing and then I realize nothing else matters but breathing well!
Dr. Jacobs has written a White Paper entitled: Lung Damage is the Third Leading Cause of Death in World. Can Covid-19, Emphysema, Asthma and More be Treated with Inhaled FGF-1? The link to that White Paper is given below.
As people have come to Zhittya with their breathing issues, such as loss of lung capacity etc., Zhittya has been studying how to conduct Medical Research Studies to see if we can enhance lung regeneration with FGF-1. Excellent animal data implies FGF-1 can help, and therefore, we have requested clearance in the British Virgin Islands and received approval to conduct Medical Research Studies on lung damage treatment with FGF-1. We have recruited our first test subject for our lung regeneration study, and this is a person who has suffered lung damage from COVID-19. That person is scheduled to be dosed in the British Virgin Islands in our June 2024 cohort of patients.
I pray that the animal data, which implies FGF-1 can stimulate the lungs to regenerate applies to humans as well, and that we have a potential treatment for the #3 cause of death in the world, respiratory diseases.
Link to White Paper for Lung Damage: https://www.zgm.care/lung.
Vika’s Patients’ Comments Section:
Here are two emails I have received over the last month from our test subjects. I only picked a few, otherwise this entire Update would be patients’ comments!
1) This is my testimony, Vika.
Hi to whom it may concern, this is what I experienced after 3 months of my BVI’S cohort last February.
I was taking 2 Levadopa pills every four hours, day, and night.
But then I noticed that my feet weren’t shaking at all, even if I missed the 4 am pills so I decided to stop taking the Levadopa.
I didn’t [realize] that this was a big no-no as I could of had adverse reactions to this.
My reasoning was that my brain had created blood vessels around the dopamine producing area that caused my tremors.
I did continue to need 1 pill at night for about a week, but I stopped that after the tremors disappeared completely.
Obviously, I was overjoyed because now, without Levadopa my chances of developing bradykinesia is remote at best.
I’m glad to inform you I haven’t needed Levadopa since then and I owe it all to the FGF-1 molecules I received at the BVI’S cohort in February of 2023.
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#2) Hello Vika,
Hope and pray that you are well and healthy.
Thank you very much on your newsletter that was received last week and I must congratulate on the progress that you[r] team is making on finding a cure for in my case Parkinson’s disease and various other diseases.
I was part of the lucky ones that was chosen as a lab rat by your colleagues for the cohort 18 when we were invited to join other lab rats from various countries and I was the first one from Zambia.
I would like you to note my progress on the treatment from Zhittya the dosing of the fgf1 that started in the bvi and continued in Zambia.
Please find below the details of my Parkinson’s disease which was first diagnosed in the later part of 2017.
My first line of treatment was through a neurological doctor in South Africa who started me on a dosage of 25/100 carbilev normal fast acting tablet 5 times per day starting from 5 am morning than followed by the second at 9am, then dose no. 3 at 12pm dose no. 4 at 3pm and no 5 at 7pm. This tabs than was increased to 1 and half tabs per each time 5 times after my tremors started to get worse. This was done in 2020.
After seeing my doctor, he also added another tablet called azilect 1mg once per day which I usually took with my 5am dose of carbilev. As days went by I started feeling lethargic and my voice started getting bad that people started noticing that I could hardly be heard. Then my ears started to give a problem because no matter how closer I was to a person I was hardly audible.
Then in 2022 I went back to my South Africa doctor who examined me and straight away increased my carbilev from one a and a half tablets per day corresponding to carbidopa 37.5/150 levodopa to 50 carbidopa and 250 levodopa with this the azilect remained at 1mg by I tablet per day plus another type of medication was added enkobist 200 twice a day and the last days dosage of carbilev 50/250was replaced by Sinemet 50/250 controlled release – this new increased dosages were started in 2022 June. By increasing the dosage, it did help a little but not what I wanted.
Then in 2023 my son Imran started looking at stem cells in various countries of the world but the people we spoke to did not sound assuring but then one day while browsing through the net we came across Zhittya and started reading about this organization and when we spoke to them we had this gut feeling after our first zoom call that this truly is a genuine outfit that looks promising culminating in our trip to BVI and going through the first treatment protocol for 6 days twice daily in the bvi. Where we met the core team consisting of Dan Montano CEO of Zhittya and his very friendly wife Vika Montano, Sam Cross the son in law and his wife who happened to be the daughter of Dan Montano and Dr Jacob’s the man behind the FGF1 discovery.
My experience after the bvi dosing is given below. I have managed to reduce my overall dosage as follows:
Dosage number 1 from carbilev 25/250 which was taken at intervals of 4 hours 5 times per day that translates to total carbidopa 125 mg daily and levodopa 1250 mg daily before my trip to bvi and now as follows.
This is now my new dosage of medication per day as follows:
Dosage number one: 5 am carbilev from 25/250 reduced to 25/100
Dosage number two: 9 am carbilev 25/250mg
Dosage number three: from Sinemet 50/200 mg-controlled release to 25/100mg controlled release.
Dosage number four: carbilev 25/250 with enkobist 200 that allows the slower release of carbidopa and levodopa in the blood stream. This will give the overall total of carbilev at carbidopa 100mg and levodopa 700mg.
This reduced level of tablets has been so good to my body that’s unimaginable plus the Fgf1. Has brought balance to my body overall my walking is excellent plus my facial features has improved and my friends say I look fresh and active my overall thinking has changed.
If you look at the overall reduction in my carbidopa and levodopa reduction in just 6 months or less is unbelievable
That shows that my Parkinson’s is on the mend looking at the reduction of carbidopa from 125 mg per day to 100mg per day and levodopa from 1250 to 700mg per day actually proves that my own dopamine production has kick started and I can only say that this are exciting times AND FURTHER DOWN THE TREATMENT PATH I AM HOPING TO BE EITHER 100%DRUG FREE OR 90%DRUG FREE.
To Dan, Vika, and Dr Jacobs and all those other Zhittya members we say keep up the hopes and god bless.
Mohamed xxxxxxxxxx, Cohort 18
Upcoming Events
April 28-30 HEALinc Future Health Innovation Summit in The Bahamas
Zhittya Genesis Medicine is a sponsor of the HEALinc Future Health Innovation Summit, a major conference being hosted at the Atlantis Hotel in Nassau, The Bahamas from April 28, 2024 – April 30, 2024. This conference will bring together over 30 speakers from around the world to discuss the future of regenerative medicine in a multi-day conference focusing on innovations in the field. Immediately following this medical conference on April 30th, Zhittya Genesis Medicine will be hosting a Cardiovascular Regeneration Symposium on Zhittya’s innovation into the treatment of coronary artery disease and severe heart disease with therapeutic angiogenesis. This breakthrough treatment has the potential to treat over 16,000,000 people worldwide who die every year from coronary artery disease.
Zhittya will be developing FGF-1 to treat severe coronary artery disease by growing new blood vessels around blocked arteries. This was established in past USA FDA and German clinical trials where the FGF-1 treatment was proven to be safe and effective in patients suffering from severe coronary artery disease. FGF-1 was able to lessen the patients’ heart pain and extend their lives by upwards of 15 years. Zhittya Genesis Medicine has plans to start this program in 2024 in The Bahamas for individuals suffering from severe heart disease.
There will also be a variety of other applications discussed at this symposium beyond Zhittya’s potential treatment for severe heart disease, such as new treatments for multiple sclerosis and Parkinson’s disease. Those in attendance will include members of Zhittya’s team, Cross Border Medical Tourism’s team, as well as Bahamian government officials. Our speakers include the CEO of the HEALinc conference, Dr. Desirée Cox; The Honorable Minister of Health, Dr. Michael Darville; members from the National Ethics Committee; and medical and community leaders such as Dr. Conville Brown, Zhittya’s partner in our clinical efforts in the Bahamas.
The conference is also available via the internet for people who cannot travel to The Bahamas. To register for either the in-person or online conference visit here: healincsummit.com
The schedule and speakers for our April 30, 2024, symposium include:
1:00 PM: Welcome by Dr. Desirée Cox, CEO and Founder of HEALinc and Chair of the Joint National Stem Cell Ethics Committee and National Medical Ethics Committee of The Bahamas.
1:15 PM: Dr. Desirée Cox will introduce the Honorable Minister Dr. Michael Darville, the Minister of Health of The Bahamas.
1:30 PM: “Therapeutic Angiogenesis: A new Potential Breakthrough Treatment to Regenerate Health and Extend Life” Dan Montano, CEO of Zhittya Genesis Medicine, will be presenting on why Zhittya’s medicine could extend a person’s life by deferring their death from insufficient blood flow to a tissue or organ, the cause of death for 65% of all people in the world.
2:00 PM: “Utilizing Therapeutic Angiogenesis to Reverse Major Diseases in the Heart, Brain, and More” Dr. Jack Jacobs, President and Chief Science Officer of Zhittya Genesis Medicine will introduce the science behind the FGF-1 medicine and show examples of human success in reversing several deadly diseases.
2:30 PM: “Development of New Therapies in The Bahamas for the Benefit of Both International Patients and Citizens of The Bahamas” by Dr. Conville S. Brown, Founder, President, and CEO of the Medical Pavilion Bahamas. Dr. Brown will present his plan to implement in his clinics in The Bahamas medical research studies to address heart disease, Parkinson’s disease and more.
3:00 PM: Break
3:15 PM: “How to Identify, Gather, and Deliver Regenerative Medicine Therapies to Medical Tourists Traveling to The Bahamas for Treatment” by Sam Cross, President of Cross Border Medical Tourism. Mr. Cross will explain the critical components of finding patients, screening patients, and bringing them to The Bahamas for treatment.
3:45 PM: “Is Therapeutic Angiogenesis a Potential Treatment for Multiple Sclerosis” by Viktoriya Tamlenova-Montano, Vice President of Strategic Innovations and Women’s Health Issues. Ms. Montano will speak about new medical breakthroughs in treating multiple sclerosis which show that MS is a vascular disease, and that FGF-1 could potentially be able to reverse it.
4:15 PM: “Summation of the Regenerative Medicine Opportunity for The Bahamas” by Dan Montano, CEO of Zhittya Genesis Medicine. Mr. Montano will be speaking on how Regenerative Medicine can enhance the economic development of The Bahamas and its people.
4:45 PM: Closing Remarks by Dr. Desirée Cox, CEO and Founder of HEALinc and Chair of the Joint National Stem Cell Ethics Committee and National Medical Ethics Committee of The Bahamas.
We encourage anyone interested in learning more about Zhittya Genesis Medicine’s potential treatment for heart disease, Parkinson’s disease, and other neurodegenerative diseases to join us in this conference and meet our team! For more information and to register for this conference visit: healincsummit.com
Cross Border Medical Tourism
Cross Border Medical Tourism services those people who want to be considered for Zhittya’s future clinical trials or its current Medical Research Studies. Cross Border’s focus is to fill all available slots in the Medical Research Studies in the British Virgin Islands (BVI), while we wait for other clinics to come online.
Cross Border is working on filling the available slots for the next BVI Medical Research Studies (intranasal FGF-1 for Parkinson’s disease) on the following dates:
Cohort #24: May 17, 2024 – May 22, 2024
Cohort #25: June 10, 2024 – June 15, 2024
Cohort #26: July 11, 2024 – July 16, 2024
Please contact Sam Cross at Cross Border Medical if you wish to be considered for the BVI cohorts. Sam’s email address is: [email protected].
In addition, if you are interested in participating in the brain scan studies, which will take place at Washington University in St. Louis, please let Sam know. There are a finite number of slots for the imaging studies. These studies will look at brain blood flow before and after treatment with FGF-1.
Dr. Jack Jacobs
Hello, everyone. I am just back from the British Virgin Islands where we treated our 23rd group of patients. It is remarkable that we have now treated over 150 patients with Parkinson’s disease with our FGF-1 product and have seen excellent improvement in motor skill testing with very few side effects (a few patients have reported mild headache after intranasal dosing, which resolved). With a medical research site set to open soon in The Bahamas, the opportunity to treat even larger numbers of Parkinson’s disease patients will be a reality and we look forward to expanding our treatment to patients suffering from other debilitating brain disorders, including Alzheimer’s disease, stroke disabilities and autism.
In this Update, Dan has brought up some of the questions we have been asked about deep brain stimulation (DBS) and he compared it to our FGF-1 therapy and I want to add some of my own thoughts to his comments. I will also finish up my section with some comments on using inhaled FGF-1 to treat lung damage caused by viral lung infections and respiratory disorders.
Deep Brain Stimulation versus FGF-1 Therapy
Like Dan mentioned above, I am not a physician or neurologist, but as a scientist I have available to me decades of published medical research on the pros and cons of deep brain stimulation which can be searched and critically reviewed. Regarding deep brain stimulation, if the patients are well selected, their diagnosis of Parkinson’s disease is clear and their symptoms are regarded as likely to respond to surgery, the DBS procedure can potentially be beneficial. Patients having this type of surgery typically see a reduction in their medication requirements following surgery and improvement in tremor, muscle stiffness and slowness of movement (bradykinesia). They also tend to have shorter and less severe “off periods” when symptoms intensify as blood levels of their Parkinson’s disease medications decline.
Let’s talk about the DBS procedure itself and then discuss things that may possibly go wrong with this treatment. The first stage of this surgical procedure involves placement of electrode wires in specific regions of the brain. To aid in wire placement a special frame is attached to the head and this attachment usually requires local anesthetics. A CT head scan is also done after the frame is attached and before surgery is performed.
After additional sedation and application of more local anesthetics, an area of the head is shaved, and one or two holes are bored through the skull. An electrode is then slowly inserted and advanced through the brain tissue, with “electrical shocks” given periodically with the resultant motor activity (for example muscle contraction or muscle twitching) recorded to estimate where in the brain the electrode is residing. Once it is estimated that the electrode has reached its final position, a second CT brain scan is performed to confirm the location of the electrode.
The next step in the DBS procedure involves surgery under general anesthesia where wires from the DBS device are placed under the skin running from the head to the chest. The wires connect to a battery placed under the skin below the collarbone or sometimes the battery is placed in the abdomen. Discharge from the hospital typically occurs after two days and thereafter follows a period of months where a neurologist will adjust the device’s stimulation settings to maximize the effect on the patient’s tremor.
So, what are the risks of the deep brain stimulation procedure? Dan has mentioned some of the risks above but let me reiterate those. The DBS procedure carries a risk of infection, hemorrhage (bleeding), stroke, and epileptic seizures. Other reported side effects following DBS include increasing headache, fever, swelling of the wounds, leakage of fluid from the wound, abnormal sensations in the face, arms or legs and weakness or numbness in the face and extremities. The risk that the surgery could cause death is small (less than 1%), but it is not zero. Why would anyone put themselves at these possible risks with DBS before first trying our FGF-1 therapy for their Parkinson’s disease?
Intranasal FGF-1 is extremely safe and has shown excellent activity in improving patients’ cognitive abilities, mood, and motor skill testing (over 70% of patients with either resting or kinetic tremor see a significant reduction in tremor). We need to get the word out on this and will be specifically contacting readers of this Update who have, or are contemplating, a DBS procedure.
Inhaled FGF-1 to Treat Lung Damage
At least 2 billion people per year are exposed to respiratory toxins, and respiratory diseases claim 4 million lives per year. It is estimated that approximately 30% of individuals who become infected with the coronavirus and have symptoms will sustain long-term lung damage. If one looks at all forms of virally-induced lung damage, the World Health Organization estimates that every year there are 200 million cases of viral pneumonia with associated lung damage, 100 million in children and 100 million in adults.
The cells in the lungs which are damaged by viral infections and respiratory disorders are the epithelial cells. These cells line the air sacs in the lung and are directly responsible for the proper exchange of oxygen and carbon dioxide in the healthy lung. When epithelial cells become damaged, pneumonia and respiratory distress result. If the epithelial cells cannot be regenerated, long-term lung damage and breathing difficulties persist.
Members of the fibroblast growth factor family, including FGF-1 and its closely related member, FGF-2, are all potent stimulators of lung epithelial cell proliferation and have shown success in reversing lung damage in animal models of viral pneumonia. An example of this lung-regenerating activity is given below.
The effect of FGF in a mouse model of lung injury was studied by researchers where the animals’ lungs were damaged by administering the chemotherapeutic agent, bleomycin, which has a known toxic effect on the lungs and kills the mice. Below is a figure which shows a survival curve for animals given bleomycin either in the absence (triangles) or presence of FGF (circles). From this graph, a dramatic increase in survival is apparent in the mice receiving FGF.
Numerous other studies support the activity of FGFs in protecting and stimulating the growth of lung epithelial cells and in lung repair. Given the excellent safety profile that has been established in humans with FGF-1, it is timely and appropriate to move forward on clinical testing of FGF-1 in patients with respiratory disorders and in COVID-19 survivors with lung damage.
Conclusion by Dan Montano
We started this journey of advancing FGF-1 26 years ago in the heart in 1998. We have expended over $170 million dollars and have enjoyed tremendous medical success, growing new blood vessels in the human heart, healing chronic diabetic foot ulcers, and now enhancing the health of people with Parkinson’s disease.
In the next few months, we should learn if FGF-1 administered through a spinal tap is a good way to treat brain disorders. We should have the first blood perfusion image in the brain to set the foundation for a follow-up imaging to see if the FGF-1 did grow new blood vessels in the brain resulting in increased blood flow. We should know if we are cleared to conduct Medical Research Studies in The Bahamas for Parkinson’s disease and severe coronary heart disease. We should have dosed our first patient with lung damage with inhaled FGF-1 to see if that is a viable therapy. We have so many amazing projects advancing, and we are very excited about our future.
We thank you for your time and willingness to join us on this journey.
Dan Montano, CEO
Zhittya Genesis Medicine
1120 North Town Center Drive, ste #270,
Las Vegas, Nevada 89144
United States of America
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No one can say that is easy being a caregiver. There are many costs to that role. It seems as if I am on “red alert” 24/7 and I’m always (all ways) hyper-vigilant. I am not a “worry wart” by any means and . . . Where I stand with my wife as she totters and may fall . . . when is help not help . . . when to shift focus on not the moment but what is needed/required over the longer haul? That sort of thing. One can consciously shift one’s focus when needed and it takes effort and re-programming the brain. There are the light moments and I work to watch for them, seize the moment and enjoy some humor. Even a wide smile can be shared. God forbid I should loose my sense-of-humor as a care-giver. My wife and I (she is the one with PD) in talking with others about the disease is to say, “PD, the gift that keeps on taking”. I sometimes worry about my capacity as an 85 year old man to keep going at the pace I do in the caregiver role. Fortunately my wife and I talk about that and make time to create plans for “what if” or “when this happens”. Having this forum is a gift to me as I stumble along the way of caregiver . . . a role I never imagined I would be in. My support comes from family and friends and they are so good at asking “how can I help”. I’m blessed to be able to both give and get help.
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Gil Williams
MemberJune 20, 2023 at 2:30 pm in reply to: Who are you in relation to your person with Parkinson’s?I am an 85 year old man who is married to a PD person. My wife was diagnosed with PD about 8 years ago and yes, the symptoms have progressed. One thing that has been challenging is until 2020 when the pandemic hit we lived half the year in Tanzania (our project there is a story for another time). We managed to spend the month of February in Tanzania and, there were moments of high stress and challenge . . . We are “off the beaten path there” and falling was always a risk. She fell 3 times and each time . . . the Tanzanians were there in seconds to help . . . it is about honoring your elders. In many ways I am the caregiver to my wife and that manifests in many ways.
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Actually this is pretty simple. It is my wife Susanne Rheault who has been dealing with PD for about 8 years now. Yes, PD is the gift that keeps on taking and . . . as a US Army brat she learned early on how to “stand straight and walk briskly”. Susie was the first born and her Dad nicknamed her “Rocky”. She had to live up to the expectations of her Dad who was the commander of all Special Forces in Viet Nam. She also early on learned a lesson from her Grandparents of “That to which much has been given, much is expected”. Not giving up is what I admire in my wife. Yes, she has her down days and yet, she pulls herself out of the PD abyss and moves on. So, long and short of it is my hero is my wife . . . day in and day out.
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One of the things I struggle with as a caregiver is . . . my wife has had PD for 5 or 6 years now. The deterioration of what use to be “normal” progresses and it can be seen over time. One of the things that can create tension between us is I see her struggling to do some things (getting the lid off her meds, getting a necklace hooked on, that sort of thing). When I try to help she often times experiences this as my not letting her do things. My strategy has been to, step back and not offer help until asked for. It is painful to see her struggle when I know I can help. Question . . . How do others deal with this?
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Gil Williams
MemberSeptember 15, 2022 at 2:14 pm in reply to: What is the best way to support a person with Parkinson’s?My wife has had Parkinson’s Disease for about 4 years now. She is able to do some physical exercise and stretching which helps to alleviate the symptoms. One of the things that seem to help her spirits is to simply “listen” . . . not give answers but listen and tell her what I hear her saying. I also do not treat her as a “victim”. Physical contact . . . I hold her and not just when asked to. Humor seems to hit a sweet spot too. One can live with Parkinson’s Disease and find joy in each day. Too much focus on the negative kills the spirit.
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Gil Williams
MemberMay 3, 2022 at 3:09 pm in reply to: Do you use music to manage Parkinson’s disease?My wife has Parkinson’s disease (she is about 5 years from first diagnosis. She takes singing lessons as that seems to keep her voice strong and can project when she is speaking.
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Half the year in Massachusetts, half the year in Tanzania.
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Thanks for your kind words Ally. Being kind in the face of adversity is a skill we all need to practice (and master). Being a caregiver to my wife in the end . . . I get so much more than I give.