Through Sarah’s eyes

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.

— Winnie the Pooh

With all my love and support,

Of Mice and Men

It remains to be seen if the success with mice can also be incorporated in humans. But the implications from this recent Press Release from the University of California in San Diego are incouraging.

June 24, 2020 | By Heather Buschman, PhD

One-Time Treatment Generates New Neurons, Eliminates Parkinson’s Disease in Mice

Inhibiting a single gene converts many cell types directly into dopamine-producing neurons

Left: mouse astrocytes (green) before reprogramming; Right: neurons (red) induced from mouse astrocytes after reprogramming with PTB antisense oligonucleotide treatment.

Xiang-Dong Fu, PhD, has never been more excited about something in his entire career. He has long studied the basic biology of RNA, a genetic cousin of DNA, and the proteins that bind it. But a single discovery has launched Fu into a completely new field: neuroscience. 

For decades, Fu and his team at University of California San Diego School of Medicine studied a protein called PTB, which is well known for binding RNA and influencing which genes are turned “on” or “off” in a cell. To study the role of a protein like PTB, scientists often manipulate cells to reduce the amount of that protein, and then watch to see what happens. 

Several years ago, a postdoctoral researcher working in Fu’s lab was taking that approach, using a technique called siRNA to silence the PTB gene in connective tissue cells known as fibroblasts. But it’s a tedious process that needs to be performed over and over. He got tired of it and convinced Fu they should use a different technique to create a stable cell line that’s permanently lacking PTB. At first, the postdoc complained about that too, because it made the cells grow so slowly.

But then he noticed something odd after a couple of weeks — there were very few fibroblasts left. Almost the whole dish was instead filled with neurons.  

In this serendipitous way, the team discovered that inhibiting or deleting just a single gene, the gene that encodes PTB, transforms several types of mouse cells directly into neurons. 

More recently, Fu and Hao Qian, PhD, another postdoctoral researcher in his lab, took the finding a big step forward, applying it in what could one day be a new therapeutic approach for Parkinson’s disease and other neurodegenerative diseases. Just a single treatment to inhibit PTB in mice converted native astrocytes, star-shaped support cells of the brain, into neurons that produce the neurotransmitter dopamine. As a result, the mice’s Parkinson’s disease symptoms disappeared.

The study is published June 24, 2020 in Nature.


Whew! I think this is about the last symptom I had listed in the Index, but I haven’t addressed the cognative issues and mental issues yet, so my work isn’t done.

Urinary Incontinence. People with Parkinson’s disease (PD) may experience bladder problems. The most common difficulty is a frequent and urgent need to urinate, even when the bladder is not full.

For PD patients, bladder issues are often due to fluctuations in dopamine levels affecting the bladder muscles and nerves, which are critical to how it functions. PD is also thought to impact the nerve pathway between the bladder and the area of the brain that controls bladder function.

Many PD patients end up having other bladder problems, including issues with urgency and frequency. Nocturia, or the need to urinate many times during the night, is also common, along with difficulty in emptying the bladder.

Half of all women and 17% of men will experience urinary incontinence, or the inability to hold urine,… for Parkinson’s disease patients, those numbers escalate.

the excerpts above were taken from:

Constipation / Gastroparesis

The enteric nervous system controlling the GI tract is part of the autonomic nervous system which is affected in PD. Gastroparesis occurs in most people with PD, as contractions in the GI tract become sluggish. This is why constipation is so common in PD, often appearing years before motor symptoms.

The ways in which Parkinson’s disease can increase the risk of constipation include: lack of dopamine (a neurotransmitter) in the brain – impairs control of muscle movement throughout the body. Bowel muscles can become slow and rigid.

Constipation is a common complication of Parkinson’s disease, but it can be managed with lifestyle changes such as adding extra fibre to your diet, or medical treatment.  Many people who have Parkinson’s disease notice difficulties with constipation before they notice motor symptoms such as tremor or stiffness.

I’m going to simply direct you to a document that covers just about every thing about what can help.. except I didn’t see my solution. I take 1 capsule of Tripple Magnesium Complex (ordered from Swansons) along with 1 capsule of Cape Aloe 250 mg (ordered from each morning and each evening. Both products attract fluid to the digestive zone helping things to be soft enough that, with digital stimulation, movement can be iniated.

Sialorrhea (drooling)

I realized there are various symptoms associated with Parkinson’s that I have listed in the index… but not posted any information on them, so I guess I will begin to complete the task.

Sialorrhea, or drooling, is the medical term for an excess spillage of saliva from the mouth. Chronic sialorrhea is when you’ve experienced this drooling for at least 3 months.

Sialorrhea can affect up to 3 out of 4 patients with Parkinson’s disease.
In many patients with sialorrhea, it’s not that their salivary glands are making too much saliva — it’s that their neurodegenerstive disease, such as PD, makes it hard to swallow. The saliva builds up or “pools” in the mouth, which leads to drooling.

For me, I think it isn’ really all that hard to swallow. But when I am focusing on a task, I don’t feel the saliva building up or falling from my mouth, until it hits my hands. It is that I don’t think to swallow.

I have learned to keep a cloth in the corner of my mouth, when I retire for the night and the Amandatine is no longer in effect, to wick out the saliva.

I saw an ad today for Myobloc… an injection therapy for resolving the problem, but the possible side effects sound so horrific, I’d have to pass on giving it a try.

Peyer’s Patches and The Lymphatic system

I read a very in-depth blog entry today

I found it very informative. For example: I knew about lymph nodes but did not understand how the tonsils, adenoids, appendix, and peyer’s patches –contribute. I don’t even remember ever hearing about peyer’s patches before. According to the internet, they are like “Tonsils in the intestine”. I also learned how the thymus, spleen and bone marrow contribute to the lymph system.

The person who led me to the article said; “The post has ideas to help (lymphatic) circulation, and the list of symptoms they report that are associated with poor circulation are the same as some of the Parkinson’s symptoms, as are the remedies. Give it a go!”

I already have incorporated a number of the 16 ways mentioned. Since my sweetheart was able to put our infared sauna in the master bath, we spend half an hour in it 5 0r 6 mornings of each week. Way #11 just reaffirms the benefit for me.

11. Infrared sauna “Fact: Infrared saunas provide a gentle, side-effect-free, effective mechanism for detoxification. Their waves penetrate deep into the human body, elevating the body’s surface temperature, activating circulation, sweating and excretion of toxins from the lymph and blood through the skin. The heat also increases your heart rate and encourages deeper breathing, which boosts the drainage process even further.”

Tip: If you have access to an infrared sauna, take advantage of this effective lymphatic activator. Practice conscious deep breathing during your sauna to supercharge lymphatic drainage. Take a break every 15 minutes to shower in cold water for 30 seconds to promote even more circulation and stimulation of the lymph.”

“Understanding how the lymph works and what to do to mobilize your lymphatic system is priceless information. It can make the difference in smoother detox process, catching or not catching a cold, or having a “flu-free winter”. The exciting news is that keeping the lymph moving doesn’t have to cost money – just move with a few daily exercises, drink plenty of water, and eat healthy food. When the lymph is working, the complexion glows and the body is full of vitality; and if you become ill, you have tools to help regain your health. This is a fundamental part of a conscious preventive health care plan.”

define… ‘Progress’

My neurologist referred me to physical therapy. I couldn’t go until they opened up the state a little. The main focus is to improve my posture, with a variety of muscle stretches and exercises, but when I told the therapist I’d discovered I could no longer skip or even do a little hop, he showed me a machine that enables me to experience jumping again. I did three reps of thirty little jumps on Monday, Wednesday and Friday. Yesterday, when home I attempted to jump, I was able to get a little air between my feet and the floor. 🙂

I am encouraged! Today I went to glean corn from a field. I would fill a bucket, and a brother would come along with another empty bucket to trade me. I wouldn’t have been able to lift the full bucket, but as I walked down between two rows of corn, I was able to move the bucket along, Since beginning the B-1 Thiamine therapy protocol, my balance has improved so much! And since beginning the Amantadine, my energy has been wonderful to experience. After two hours in the hot Florida sun, I was able to sit on the kitchen stool and shucked three dozen ears of corn, to prep for the freezer. Life is good.

For those PwP who are not seeing the type of improvement that I am enjoying, I thought I would share a perspective from Cory King’s blog ‘The crooked Path’ he defines “progress” as “no backward movement.” . “This ingenious technique usually works, at least partially.  As an example, it’s been used to coerce the Medicare program to continue to spend money on physical therapy for people with Parkinson’s when there is no clear evidence of improvement – as long as you’re slowing down the rate of degeneration, that’s progress”.


Making progress

I have started going to physical therapy, per my neurologists instructions. Yesterday the therapist (Mike) allowed John to come in and observe. Mike took time to explain why he was having me do each activity and instructed John on how he could assist me at home, to help me stretch the muscles and tendons which are typically drawn tight with Parkinson’s.

I have always been pretty limber and could touch my toes without bending my knees. So I never saw the benefit of stretching before exercising. But times have changed. He had me stand on a foot board which angled the foot up to a 45 degree angle, which stretched the muscles in the calf of the leg. I felt it for three days after.

Mostly, the effort is to improve my posture. And level my shoulders, because I lean to the left so much. Mike also works with me, giving me suggestions to help me remember to swing my arms and where to place my feet. He says I walk in a scissor step crossing one foot in front of the other.

I went to my primary care doctor today for him to review all of the results of the recent blood work and other tests he had ordered. He said everything looked perfect. No sugar problems, no high cholesterol, heart, thyroid, liver and kidney function are all great.

I received a bonus container of “Pure Creatine” with a mail order. A couple months ago, I decided to go to the internet to see what it was used for and was surprised to see claims that some people feel it has been helpful for PwP. I use an electrolyte drink mix recommended by my primary care doctor. To my surprise, a scoop of the Creatine added to a 12 oz bottle of electrolyte blends right in and is flavorless. So, I am using it up.

Who knows? Perhaps the Creatine will work in synergy with the StemEnhance I am taking. I can definitely report the B1 Thiamine has helped resolve my balance issues, And the Amantadine continues to provide me with unparalleled energy.




Another glimmer of hope

ps… the dilation of my esophagus went well.

In December of 2019 my friend Reg McDaniel discovered a device only available in Europe and Reg’s friend ordered one out of Germany to arrive in UT.  It’s an FDA approved class II medical device and Reg has traveled with him on many occasions and seen with his own eyes miracles occur in hours , not days, weeks or months.  
          On April 30th Reg wrote:  “I write this today because as of today it is available in the USA  and if you are interested, I will gladly share it with you.  It costs between $470 plus tax and shpg. to $2,357 if you want all the bells and whistles and that is what I chose.  There is a $49 processing fee.  For those who buy one before May 15th at midnight I can save you hundreds of dollars on the smaller packages to over $1,000 on the largest available package.  After the date of May 15th, everyone pays full price and all fees. I have seen with my own eyes in hours what I’ve seen in the past take – days, weeks and months to resolve.  If this doesn’t interest you then we’re done.  For those who want to know more then read on:”

          Reg then told me about a book, which I purchased to read on Kindle.  All I can say is wow!!  I want to experience this health promoting tool!

“The book on Amazon you can buy right now is called Resonance Therapy by Carolyn McMakin.

“In it you can read about all the diseases it has dealt with for the past 20 years with 98 %  success rate in hours vs. days weeks or months.”

I plan to obtain the device… If you read the book, you just might want to experience it for yourself.