I responded to the email from the Davis Phinney Foundation… and was so impressed by the results I got… I simply had to share.
They typed………………
“Here at the Davis Phinney Foundation, we are making the most of the support our community continues to provide. We wouldn’t be able to deliver our education, community outreach, and quality of life programs without you. In thanks we want to help you accomplish an essential task during this special month: creating or updating your will, trust or estate plans to protect what’s important to you.”
“August marks National Make-A-Will Month, giving you a special opportunity to think about the things in your life you wish to protect now and forever. Thanks to our partnership with FreeWill, hundreds of members of our community have completed their wills. You can join them by starting or updating your plans with the free online estate planning tool that makes it easy to update and complete your legal will or trust, all at no cost.”
Davis Phinney Foundation partnered with FreeWill to allow you to create your legacy in 20 minutes and ensure peace of mind and security for you and your loved ones.
If you don’t have time to complete filling out the information now, I encourage each of you to go to the website and start the process… at https://wwwfreewill.com/ It has a person add a little information and then click on save. Once you have saved it, your email is the login to re-access it. The first time you attempt to log back in it gives you a place to set your password. They encouraged us to tell as many people about this tool as we’d like to. Once you have gone through the program, saving as you go, you can go back through and edit or correct.
Ours were pretty simple… and the final document that it produced with all the legaleaze and lines for signatures and notary’s signing and verifying was 15 pages. for those with under aged children, you would have more to complete, indicating guardianship choices, etc. so probably even more than 15 pages.’
Another cool thing about it is. your account is online and you can simply update it, if you have an address change, add a member to the family, or any number of decision changes. Then reprint it, get it notarized and destroy the earlier version.
To any of my followers who are caregivers dealing with a PwP plus dementia I’d like to suggest a blog by a caregiver who provides such positive insights and suggestions to help a caregiver to cope he goes by AdjunctWizard I just wanted to share an example of his writing :follow him.
Cheryl will start to tell a story about an incident that occurred earlier to me as though I am someone else. In the story she will refer to me in the third person as “your dad.” I think that she thinks I am one of our children but I could merely be a nice someone with her because sometimes she refers to me as “Paul.” I used to resist this a bit and point out that I was me. Lately I quit doing that. I quit doing it because it aids me in finding where she is in her head and it serves no useful purpose other than to make me right and her wrong. Typically it is a late afternoon discussion as we head somewhere for dinner. In the car she will start with, ” you know your dad and I …” After she gets her thought out I can respond with, “No kidding, I didn’t know that” or some other suitably benign response. If there is more to the story she will go on. There is so much to learn on this road of Parkinson. If you have not tried it, take a deep breath, enjoy the ride, the scenery and the stories along the way. You cannot be sure of the weather, road conditions or the vistas ahead. Be one with the journey.
A sweet person on a group chat asked a question: “How do you make the transition to a nursing home?
I personally don’t think I need to worry about a nursing home to the end of my life, but things do happen. My mother promised her mother she would never put her into a nursing home… But after my mother had a disabling stroke, and she was total care for my father, he had no choice but to put his mother-in-law, Lola into a home. It was the best thing that could have happened, for Lola. She met other ladies she had things incommon with. they would sit together and knit, they watched the same soap operas. She was as happy as a duck in a puddle.
So, with that knowledge…I wanted to share some thoughts gleaned from the chat: and advice that I have put in bold.
At some point your relatives may want to settle you into a nursing home. Here are some of my ideas based on shared experiences. Can you think of more ideas? What are the advantages of moving into a nursing home? 1. You won’t have to cook your own meals any more. Granted, institutional food is not as healthy or natural as what you might fix for yourself, but normally the meals & snacks are created by professional dietician and are balanced & varied. 2. You won’t have to clean house. 3. You won’t have to do laundry. 4. You will have physical therapy available. 5. You will have activities available. 6. You won’t have to remember when to take your meds. This may seem like not worth the price of giving up your freedom, but in many ways it will give you more freedom to write, color, listen to music, get on the internet, look out the window, and be yourself. Before you go, be sure to pack your activities Additionally, be sure to mark your name on everything clearly with a permanent or laundry marker. Get a silver or gold marker to mark black things. Carve your name in some things with a knife tip, engraving tool or drimel, before you mark it; cellphone, chargers, laptop. 1. Your cellphone & charger. 2. Your laptop. (Check to make sure you will have internet access.) 3. Your coloring books & colors. 4. Your music & something to play it on – headphones or earbuds are best. 5. Address &/or phone books. If you have time, program them into the contacts in your smart phone or take a picture & save it on your laptop. Be sure to save it on Cloud or Google Drive so you will still have it if something happens to your device. 6. A warm coat, hat, muffler (scarf) & gloves in case you get to (or need to) go out in colder weather. 7. Lighter outer wear including a raincoat & rain hat for cool but not cold weather. 8. A week’s worth of warm clothes, spring or fall clothes, and summer clothes. 9. PJ’s or nightgown 3 or 3 & bathrobe & slippers – 2 each. 10. A good grabber for reaching things. 11. Paper & pens & pencils & pencil sharpener. 12. A small safe, hopefully with a setable combination lock, not a key. Set the combination to a number you can easily remember. Things you will Not need: 1. Furniture 2. Knick knacks These may be hard for you to leave someday. Begin to eliminate what you can,. It helps to have pictures of favorite items. It also helps to bequeath them to a descendant who will value them. If not, sell them on Craig’s list & at least you will have the money for them. Speaking of money, nursing homes are expensive. They often take the money from the sale of your home or property, so put the property in a relative’s name first and set up a bank account with a relative that does not have your name on it. Pets – many nursing homes will allow 1 pet if you feed it and take care of letting it out to do its job yourself.
This was taken from a post on a forum I participate in. The contributor uses the sign in name of … PrayN4aCure
“I wanted to give this forum an update on my participation in the clinical trial at the University of Texas in Houston. I was reluctant to comment beforestudy was completed but was compelled by my wife to do so. It has been nearly one month since my first infusion, but my family has witnessed some clear improvements.”
“The first thing that they noticed was my freezing has completely stopped. The next biggest changes are that I no longer have any tremors, my rigidity has lessened, and my gait has improved where I no longer drag my right leg. What I noticed, is my speech has improved along with my vision has become clearer, and my jaw and tongue no longer quiver when I open my mouth.”
“I only had a 33% chance of receiving the real stem cells on the first leg, so I wasn’t expecting anything, but I did notice after 2 two weeks I started feeling a little flushed each day. My blood pressure remained steady, and I temperature was normal, but I remember the Dr. asking me during the infusion how I was feeling and if I felt flushed. Just an observation.”
“So if I got the Placebo, all I can say is sign me up for another. I am patient 37 out of 45 and I am in the last group. Group 1 has already received their 2nd infusion and mine is scheduled at the end of February. I remain cautiously optimistic and hopeful that this study will prove to be a viable therapy for those who have any form of neuro-degenerative disease, until a complete and effective cure has been has discovered.”
“I will keep y’all updated.”
Explanation of proceedure involed: additional information provided by another forum member using the user name of Despe
“Bone marrow extraction from a healthy donor was obtained by aspiration under local anesthesia. Testing was performed using FDA-approved licensed kits by Gulf Coast Regional Blood Center. MSCs were expanded using a Terumo Quantum Bioreactor29 by the Center for Cell and Gene Therapy of Baylor College of Medicine under current Good Manufacturing Practices designated by the FDA. The total quantity of allo-hMSCs was reached in 3 passages. Thawing was initiated on infusion day, and allo-hMSCs were aliquoted into a 250-mL transfer pack with 5% buminate. Release tests were performed on the pooled cells (purity, viability, cell dose, and microbiological testing).”
I am pleased to alert you to a new book published by some friends of mine. We met, because of the Parkinson’s group in the villiages. John and I attended one of their seminars and deffinitley learned some valuable information which has already been of great worth. I recommend it to both caregivers and PD warriors. Sue
A new book, “Our Parkinson’s Disease Instruction Manual: How to have a good life while coexisting with Parkinson’s disease” is now available at Amazon.com. It can be purchased as a digital download or as an 8 ½ x 10 inch printed book. The digital version can be read on a Kindle, tablet, computer, or smartphone. The digital version costs $4.95 or, if you have a Kindle Unlimited subscription, there is no charge. The printed version costs $ 11.95 plus tax. Go to Amazon.com and search for “Our Parkinson’s disease Instruction Manual”.
Authors are fellow Villagers Edmund Smith and Jane Masterson. They have 25-years of experience with Parkinson’s disease and are frequent speakers in The Villages and other places where they give a seminar entitled “Ideas for Living Well with Parkinson’s Disease”.
The book covers the following subjects in 24-chapters: How to get great medical care, Learning from others, Exercise, Drugs, Electronic gadgets, Tricks to unfreeze, Speaking loudly and clearly, Making the home PD friendly, The bathroom, The bedroom, Urinary incontinence, Keeping the caregiver healthy, Assist devices, Increasing your mobility, Lift assist, Preparing for a visit to the hospital, Inpatient rehabilitation, Driving, Flying, Vacationing, Parkinson’s and pets. The book includes thirty-five photographs and twenty-five Internet links.
It is unwise to assume that all new symptoms are just due to the progression of Parkinson’s or in response to a person’s Parkinson’s medication. I have followed a chain of conversation on a Parkinson’s chat room used by both Parkies and their care givers. What follows began a month ago with a daughter’s concern for her mother’s decline in health. The daughter just posted the following:
“Thank you all for your insight and caring. All things we tried did not help. It turns out that while we were focusing on Mom’s PD, she was slowly and unknowingly overdosing on Metformin (Glucophage) which was supposed to control her type 2 diabetes. She had been taken off her other diabetes medicines because she was otherwise able to control glucose with diet. I don’t know why her GP left her on such a high dose of Metformin– 1500mg/day! So the metformin caused a build up of lactic acid, which caused kidney failure and sepsis, and she is now at this moment in a critical care unit fighting for her life, on dialysis, blood transfusions, and in a medial coma. We don’t know day to day if she will recover from this (she went in to the hospital by ambulance 6 days ago) and are preparing to let her go if she doesn’t improve. We have had small flickers of hope: her blood levels are better, kidneys have started to work a little, she may be able to be weaned off the respirator any day. But we are in a horrible limbo waiting, and all the while cannot even visit her due to Covid restrictions.”
“I post this with a heavy heart and in hopes that anyone out there who takes metformin will insist on regular re-evaluation on the need/dose for this medicine. All the symptoms were there with my mom: extreme fatigue, confusion, loss of appetite and vomiting, severe dehydration, muscle weakness, hallucinations, all with a rapid decline in overall health– but no one thought to look at those symptoms as anything other than PD issues. Please please if you or a loved one takes Metformin and has any of these symptoms, a simple blood test is all it takes to rule out metformin overdose (the results will show high lactic acid).”
My step mother is suffering with kidney failure … possibly due to similar medication overdosing.
There are links included in her letter. I’d encourage you to take time to view them. Most of them seemed to be YouTube – Ted talks.
IF I could turn back the clock and write a letter to every single one of my clients on the day they were diagnosed with Parkinson’s, this is what the letter would say.” (she is a physical therapist)
“Dearest Friend,
Today likely didn’t go the way you planned nor wanted it to go. Whether you’re feeling confused, frightened, angry, or apathetic, I want you to know I’m here for you. I know a new diagnosis of Parkinson’s can knock you for a loop, but consider this letter an invitation to a new chapter of your life – one that is much brighter than you may be imagining at this moment.
I think the tendency is for someone to say “I’m sorry” right about now, but I’m going to hold off on that lingo because I have a feeling you’re likely not looking for sympathy. Instead, I want to offer my support. Please don’t consider this a hand-out (I know you’re not looking for that either) – I just ask that you consider what I’m about to say with a brave and open heart. Many people that I care about have stood where you stand now with questions, looking for hope. I’ve learned a lot watching them go through this process and, while I won’t pretend to know all the answers, what follows is my best advice for the next chapter of your life…
1 You are Not broken.
It may be your default to take this diagnosis as a sign that your body is broken or even revolting against you but your body is simply telling you it needs serious TLC. It’s likely been telling you this for a while but up until now it’s been easier to ignore than pay attention to. Today your body shouted loud enough for you to hear it so now begins the journey of listening and tuning in to what it’s telling you. Your body is resilient and always seeking health and repair – you just need to give it what it’s asking for.
2 Your Future has Not been decided for you.
There will be naysayers and fear mongers, but a diagnosis of Parkinson’s is just that – a diagnosis. It’s a label for a collection of symptoms, not your prognosis or a crystal-ball prediction of what your future holds. It’s okay to believe you’ll get better, not worse, and that you’ll never need a wheelchair. This isn’t denial if this belief is paired with deliberate action on your part to improve your health and maximize your vitality. Your future is in Your hands, no one else’s, and your attitude is everything.
3 Don’t Hide.
Your instinct is likely to hide your diagnosis and pretend all is well. The thought of walking into a Parkinson’s support group may make you want to cry – after all, who wants to be face-to-face with a future they’d rather not confront? Luckily, Parkinson’s symptoms aren’t contagious! Joking aside, the Parkinson’s community is incredibly strong and supportive and is an amazing resource. Just because others present with certain symptoms doesn’t mean that’s your fate and learning from their experience is valuable beyond measure. Find a local support group, meet-up, or just another like-minded person with Parkinson’s (PWP) who can act as a confidant through this process. There are many online support groups and you’ll definitely be able to find one that matches your current situation and attitude. Seek out resources that build you up and have a positive impact. Remember, there is strength in numbers and no one can (or should) go at this alone. JOIN OUR TRIBE – SIGN UP FOR OUR NEWSLETTER
4 Start Exercising. Now.
The evidence is strong – regular exercise is neuroprotective (meaning it protects your brain) and promotes neurogenesis (meaning it helps develop new connections in your brain). The buzzword is “neuroplasticity” which means your brain is always molding and changing based on what you ask it to do. So, challenge it (mentally and physically) to change it for the better. The absorption and utilization of dopamine, the neurotransmitter that is lacking in Parkinson’s, is significantly boosted with a challenging and frequent exercise regime. The bottom line: You shouldn’t miss a day of exercise in the same way you wouldn’t miss a day of taking your medication. Yes, it’s that important! If you’re not an exerciser.. well, you are now!
5 Small changes = Huge difference.
Observe your diet. We swallow food just like we swallow pills – why expect that one will have an affect on your symptoms and the other will not? Toxins come in many forms – pesticides, hormones, pollution, food additives and sugar, to name a few – and they burden your immune system and brain. Eat as organic and close to nature as you can afford. Explore supplements but realize you can’t supplement away a bad diet. (Healthy) fats are your friend. Find activities that calm your mind and fill your soul – do them daily. Meditate. Laugh. Prioritize sleep – this is where your brain heals and flushes out toxins. Treating your body like a temple will dramatically affect the way you move, think, and feel.
6 Take Action Now, don’t wait.
You may feel you’re “not that bad”. Your symptoms are minimal and you feel you can pretend they don’t exist and for a while, yes, you’ll be able to go on as if nothing’s ever happened. Your urge to “stay normal” in the eyes of others for as long as possible is strong – I get it. However, when it comes to Parkinson’s there is no waiting, whether you have symptoms or not. Taking immediate action to uplevel your exercise program, manage your stress, regulate your sleep cycle, and overhaul your nutrition is crucial to preserving your precious brain and is the only option. Medication will help your symptoms and DBS may reduce your tremors, but these are simply masking the dysfunctions in your system, not fixing them. Very similar to the way money compounds in your bank account – not changing your habits now will only compound your problems down the line. Starting today, put yourself first and make your health and future your top priority.
7 Find Acceptance to Dissolve Fear
Accepting where you are is different than surrendering – it inspires action instead of passivity. Embrace where you are in this moment. You may have heard the saying, “What you resist, persists”, so don’t push away your feelings. Instead, feel them fully. Cry.. Scream.. Laugh.. By being here, right now, you’ll find that you’re OK. Fear has no place here because you’re not in any immediate danger. The fear comes when you leave this moment and your mind floats into a fabricated future. Stay present and focus on what you can do in this moment. I believe in you.
“There is something you must always remember: You are braver than you believe, stronger than you seem, and smarter than you think.
There are links included in her letter. I’d encourage you to take time to view them. Most of them seemed to be YouTube – Ted talks.
IF I could turn back the clock and write a letter to every single one of my clients on the day they were diagnosed with Parkinson’s, this is what the letter would say.” (she is a physical therapist)
“Dearest Friend,
Today likely didn’t go the way you planned nor wanted it to go. Whether you’re feeling confused, frightened, angry, or apathetic, I want you to know I’m here for you. I know a new diagnosis of Parkinson’s can knock you for a loop, but consider this letter an invitation to a new chapter of your life – one that is much brighter than you may be imagining at this moment.
I think the tendency is for someone to say “I’m sorry” right about now, but I’m going to hold off on that lingo because I have a feeling you’re likely not looking for sympathy. Instead, I want to offer my support. Please don’t consider this a hand-out (I know you’re not looking for that either) – I just ask that you consider what I’m about to say with a brave and open heart. Many people that I care about have stood where you stand now with questions, looking for hope. I’ve learned a lot watching them go through this process and, while I won’t pretend to know all the answers, what follows is my best advice for the next chapter of your life…
#1 You are Not broken.
It may be your default to take this diagnosis as a sign that your body is broken or even revolting against you but your body is simply telling you it needs serious TLC. It’s likely been telling you this for a while but up until now it’s been easier to ignore than pay attention to. Today your body shouted loud enough for you to hear it so now begins the journey of listening and tuning in to what it’s telling you. Your body is resilient and always seeking health and repair – you just need to give it what it’s asking for.
#2 Your Future has Not been decided for you.
There will be naysayers and fear mongers, but a diagnosis of Parkinson’s is just that – a diagnosis. It’s a label for a collection of symptoms, not your prognosis or a crystal-ball prediction of what your future holds. It’s okay to believe you’ll get better, not worse, and that you’ll never need a wheelchair. This isn’t denial if this belief is paired with deliberate action on your part to improve your health and maximize your vitality. Your future is in Your hands, no one else’s, and your attitude is everything.
#3 Don’t Hide.
Your instinct is likely to hide your diagnosis and pretend all is well. The thought of walking into a Parkinson’s support group may make you want to cry – after all, who wants to be face-to-face with a future they’d rather not confront? Luckily, Parkinson’s symptoms aren’t contagious! Joking aside, the Parkinson’s community is incredibly strong and supportive and is an amazing resource. Just because others present with certain symptoms doesn’t mean that’s your fate and learning from their experience is valuable beyond measure. Find a local support group, meet-up, or just another like-minded person with Parkinson’s (PWP) who can act as a confidant through this process. There are many online support groups and you’ll definitely be able to find one that matches your current situation and attitude. Seek out resources that build you up and have a positive impact. Remember, there is strength in numbers and no one can (or should) go at this alone. JOIN OUR TRIBE – SIGN UP FOR OUR NEWSLETTER
#4 Start Exercising. Now.
The evidence is strong – regular exercise is neuroprotective (meaning it protects your brain) and promotes neurogenesis (meaning it helps develop new connections in your brain). The buzzword is “neuroplasticity” which means your brain is always molding and changing based on what you ask it to do. So, challenge it (mentally and physically) to change it for the better. The absorption and utilization of dopamine, the neurotransmitter that is lacking in Parkinson’s, is significantly boosted with a challenging and frequent exercise regime. The bottom line: You shouldn’t miss a day of exercise in the same way you wouldn’t miss a day of taking your medication. Yes, it’s that important! If you’re not an exerciser.. well, you are now!
#5 Small changes = Huge difference.
Observe your diet. We swallow food just like we swallow pills – why expect that one will have an affect on your symptoms and the other will not? Toxins come in many forms – pesticides, hormones, pollution, food additives and sugar, to name a few – and they burden your immune system and brain. Eat as organic and close to nature as you can afford. Explore supplements but realize you can’t supplement away a bad diet. (Healthy) fats are your friend. Find activities that calm your mind and fill your soul – do them daily. Meditate. Laugh. Prioritize sleep – this is where your brain heals and flushes out toxins. Treating your body like a temple will dramatically affect the way you move, think, and feel.
#6 Take Action Now, don’t wait.
You may feel you’re “not that bad”. Your symptoms are minimal and you feel you can pretend they don’t exist and for a while, yes, you’ll be able to go on as if nothing’s ever happened. Your urge to “stay normal” in the eyes of others for as long as possible is strong – I get it. However, when it comes to Parkinson’s there is no waiting, whether you have symptoms or not. Taking immediate action to uplevel your exercise program, manage your stress, regulate your sleep cycle, and overhaul your nutrition is crucial to preserving your precious brain and is the only option. Medication will help your symptoms and DBS may reduce your tremors, but these are simply masking the dysfunctions in your system, not fixing them. Very similar to the way money compounds in your bank account – not changing your habits now will only compound your problems down the line. Starting today, put yourself first and make your health and future your top priority.
#7 Find Acceptance to Dissolve Fear
Accepting where you are is different than surrendering – it inspires action instead of passivity. Embrace where you are in this moment. You may have heard the saying, “What you resist, persists”, so don’t push away your feelings. Instead, feel them fully. Cry.. Scream.. Laugh.. By being here, right now, you’ll find that you’re OK. Fear has no place here because you’re not in any immediate danger. The fear comes when you leave this moment and your mind floats into a fabricated future. Stay present and focus on what you can do in this moment. I believe in you.
“There is something you must always remember: You are braver than you believe, stronger than you seem, and smarter than you think.
I want to recommend a blog created by three ladies; Marilee, Allison and Kelly. https://branchbasics.com/blog/ They typed; “We believe choices like the food we put in our bodies, the paint we put on our walls, and the cleaners we use around our homes have power; the power to rob us of good health or to cultivate it.”
It all began when Marilee avoided dialysis and a kidney transplant through a change in diet using “Food as Medicine”. She saw clearly how the choices we make each day, such as the food we eat, can literally change the course of our life.
Allison’s physical breakdown was linked to chemical exposure from the building materials in her newly-constructed apartment…… It wasn’t until she spent a summer living with Marilee – where everything Allison put in, on and around her body was truly clean – that her symptoms disappeared and she experienced whole-body healing. To say she was sold on this lifestyle is an understatement! She went on to naturally reverse PCOS and, in 2016, conceive a beautiful baby girl, something doctors told her would never happen
All of the “normal” problems Kelly had experienced her whole life: dry and itchy eyes, painful menstrual cramps, headaches, etc. disappeared! Turns out they don’t have to be normal after all.
Store food in jars. This is an economic game-changer. Not only is it healthier than using plastic storage containers, but it makes it easier to see dry goods and leftovers so nothing gets wasted.
Line your crispers with paper towels to absorb moisture and prevent veggies from spoiling.
Stop fruit flies from ruining your fruit by keeping a small jar of vinegar with a few drops of dish soap on the counter. The flies are attracted to the vinegar and will drown.
Store onions and potatoes in paper bags to prevent sprouting.
If you buy carrots in bulk, you can store them in a bin of sand to keep them fresh for weeks.
Remove produce from plastic, this prevents the natural gasses from over-ripening and spoiling your food.
Store raw nuts and nut flours in the fridge or freezer to prevent spoilage.
Store fresh herbs upright in water, like flowers, to keep them from getting slimy.
Get familiar with what can be frozen. For example, did you know you can freeze milk for future use in smoothies and sauces? And cheese and cottage cheese can be frozen as well.
Keep all your citrus in the fridge.
Revitalize limp veggies, like lettuce, celery, and carrots, by placing them in cold water.
Standing up to Parkinson's 