How many options?

Someone else made a comment: “We take meds to make the symptoms bearable. If your symptoms dont require meds yet dont take them, but if they do why deprive yourself? You should not feel guilty or be made to feel guilty and its not giving in.”

Kelly Crumrin wrote the following in an article in the My Parkinsons Team community. She has given pretty thorough details about the numerous options. “People with Parkinson’s can improve their symptoms and quality of life with effective treatment options.”

“Symptoms and severity can vary widely between individuals with parkinsonism. There is no standard treatment for Parkinson’s. Guidelines for Parkinson’s treatments are based on what symptoms a person has, the severity of the symptoms, how long they have had Parkinson’s, which type and stage of Parkinson’s they have, tolerance of side effects, the age of the person, and any other health conditions they have or medications they use. Some treatments are highly effective for one type of Parkinson’s, but ineffective for others. In most people, medications gradually lose their effectiveness as the disease progresses.”

Medications for Parkinson’s

“In Parkinson’s, the brain cells that produce a neurotransmitter — a chemical that helps nerves communicate — called dopamine begin to shrink and die. With too little dopamine, the brain cannot facilitate movement as well. Researchers believe parkinsonian symptoms begin when the level of dopamine falls to about half of normal levels. Levels of other neurotransmitters rise, trying to compensate for the lack of dopamine, and this results in more dysfunction.”

“Many medications for parkinsonism are aimed at improving motor symptoms by raising levels of dopamine, replicating the effects of dopamine, or controlling levels of other neurotransmitters. Other medications are taken to treat side effects of Parksinson’s treatments, psychotic symptoms, or low blood pressure that leads to falls soon after standing.”

“Most Parkinson’s medications need to be carefully timed on a daily schedule around meals, bedtime, and waking. Correctly timing medications ensures the most effectiveness, avoids “off” times when symptoms worsen, and avoids dangerous interactions with food or other medications. There are many mobile applications available to track medication timing.”

“Many Parkinson’s medications can cause serious withdrawal symptoms if stopped suddenly. Other drugs must be out of your system for weeks before you start another type of medication. If you want to stop or change medications, always discuss a plan with your doctor for tapering off.”

Dopaminergic Medications

“The first drugs offered to many people with Parkinson’s are dopaminergic drugs — drugs that work by influencing dopamine levels. Dopaminergic drugs include the combination medication Levodopa/Carbidopa (sold under the brand names Sinemet, Parcopa, and Rytary). Levodopa/Carbidopa is usually taken orally. If Levodopa/Carbidopa is working, but the person still has “off” hours when symptoms are more pronounced, the doctor may recommend Duopa, a system that infuses Levodopa/Carbidopa directly into the small intestine via a small, battery-powered pump.”

“These drugs eventually become less effective and wear off sooner, resulting in “off” time. When Levodopa/Carbidopa begins to lose effectiveness, some people switch to Stalevo (Levodopa/Carbidopa/Entacapone), which adds a third drug to the combination. Entacapone, sold separately under the brand Comtan, is a catechol-O-methyltransferase (COMT) inhibitor. Entacapone is believed to work by increasing the amount of Levodopa that reaches the brain, making Levodopa effective at significantly lower doses. Tasmar (Tolcapone) is another COMT inhibitor. COMT inhibitors can cause liver damage and worsen side effects of Levodopa.”

“Over the long term, Levodopa therapy causes many people to develop dyskinesia — involuntary swaying, writhing, or head-bobbing movements — as a side effect. Amantadine, sold under the brand names Symmetrel and Gocovri, may be prescribed to treat dyskinesia. Amantadine is classified as an antiviral and anti-Parkinsonian drug. It is believed that Amantadine works by increasing the amount of dopamine available in the brain.”

“Some people also develop impulsive or compulsive behaviors — gambling, shopping, or sexual activities — abnormal to their usual habits and personality. Side effects become more likely and worsen with higher dosages. Due to these serious side effects, people with Parkinson’s may choose to delay starting Levodopa until motor symptoms begin to disrupt their daily activities.”

“Dopamine agonists may be given alone or in combination with Levodopa/Carbidopa. Dopamine agonists are believed to work by making brain cells more receptive to dopamine. The dopamine agonist class includes oral drugs Apokyn (Apomorphine), Mirapex and Mirapex ER (Pramipexole), and Requip (Ropinirole). Neupro (Rotigotine) is administered as a skin patch.”

“Serious side effects of dopamine agonists can include dizziness, fainting, and increased risk for heart problems.”

“When dopamine levels drop, levels of another neurotransmitter called acetylcholine rise and cause additional symptoms. Anticholinergics such as Artane (Trihexyphenidyl) and Cogentin (Benztropine mesylate) are believed to work by regulating levels of acetylcholine in the brain. Anticholinergics can cause or worsen memory problems and constipation.”

“Early in the course of Parkinson’s, some people take medications from a class of antidepressant drugs called monoamine oxidase inhibitors (MAOIs). MAOIs are believed to work by preventing the breakdown of dopamine in the brain, thereby increasing the amount of dopamine available. MAOIs are somewhat effective at treating Parkinson’s symptoms, and some may help protect the brain and slow the progress of Parkinson’s disease. MAOIs include Azilect (Rasagiline), Xadago (Safinamide), and Selegiline, sold under the brand names Eldepryl and Zelapar. MAOIs can worsen side effects caused by Levodopa.”

Symptom Management Medications

“Exelon (Rivastigmine) is an acetylcholinesterase inhibitor. Exelon is believed to work by increasing the amount of a neurotransmitter called acetylcholine in the brain.”

“Northera (Droxidopa) treats orthostatic hypotension (dizziness upon standing up) in people with Parkinson’s disease.”

“Psychotic symptoms such as hallucinations, delusions, and paranoia may be caused by Parkinson’s or medications used to treat it. Antipsychotics such as Seroquel (Quetiapine) and Nuplazid (Pimavanserin) may be prescribed to reduce psychotic symptoms. Antipsychotics are believed to work by interfering with serotonin receptors in the brain. Unfortunately, some antipsychotics can worsen Parkinson’s symptoms.”

“Some people with Parkinson’s use medical marijuana to treat symptoms including pain, mood problems, and sleep disorders. Depending on your symptoms, one strain of medical cannabis may provide more benefit than another.”

“Depression and anxiety are common in Parkinson’s, as in all chronic conditions. Some people take antidepressants to improve their mood and outlook. Work with your doctor to choose an antidepressant that will not interact with Parkinson’s medications or other drugs you take.”

Lymph Circulation and WBV

Why is moving so important for PD? The circulatory system has the heart to pump blood, but your lymphatic system has no pump; it is dependent on your movement and contraction of the muscles to allow the lymph fluid to flow. Among other functions, your body depends on the “sewerage system” to detox waste, bacteria/ viruses, toxins, metabolites, and abnormal cells that can lead to various illnesses. If this crucial detoxification drainage system is stagnant or insufficient, it can directly result in elevated oxidative stress among other comorbidities.

“Findings suggest that lymphatic clearance dysfunction is crucial in the onset and development of PD, and might be therapeutically targeted to alleviate age-associated neurodegenerative disorders.”

I set my WBV on 70+ for moving lymph. Dr. Ian says it is great for giving yourself a facial and decreasing wrinkles

https://www.youtube.com/watch?v=jgg8hkdJOaA

“— Hello Dr. Ian here talking about the benefits of whole body vibration with lymph lymph is that clear fluid that oozes out of our skin it’s an extracellular fluid. when we get an abrasion like a rug burn you get that white ooze that’s the lymph. Lymph. is very important to the body. there’s. there’s more lymph fluid in …

Bradykinesia

Bradykinesia or slowness of movement is one of the main symptoms of Parkinson’s.  The general effect of bradykinesia is that it takes more time and effort to complete daily tasks, which can result in fatigue. 

When experiencing slowness of movement a person with Parkinson’s may notice the following:

  • Lack of spontaneous activity e.g. arm swing diminishes
  • Fine motor coordination is reduced e.g. handwriting becomes smaller
  • Changes in walking such as short, shuffling steps
  • Episodes of freezing or periods of immobility
  • Difficulty turning over in bed or rising from a chair
  • It takes longer to do things

Managing Bradykinesia

Some people with Parkinson’s find physiotherapy helps to improve their symptoms.  A physiotherapist can recommend exercises and techniques to help with your mobility.

Medications for Parkinson’s can also help improve movement and reduce slowness. 

Impacted by rigidity

Rigidity or stiff or inflexible muscles is one of the main symptoms of Parkinson’s, alongside tremor and slowness of movement. Not everyone will experience all of these symptoms.

In Parkinson’s rigidity is often most noticeable when you move a joint through a circular movement. The movement often feels as if the joint is moving through a number of cogs, known as ‘cogwheel rigidity’.

Some people also experience a constant resistance to motion throughout the entire range of movement, known as ‘lead pipe rigidity’.

Parkinson’s and Rigidity

Rigidity can stop muscles from stretching and relaxing. It can cause:

  • Stiff muscles
  • Inflexible muscles
  • Pain and muscle cramps
  • Fixed ‘mask-like’ facial expression
  • Inability to swing arm or arms when walking
  • Difficulties getting out of chairs, turning over in bed and turning around
  • Difficulties with fine movements such as writing or doing up buttons
  • Postural change
  • Fatigue

I spoke to a PwP who said, “I have PD induced COPD and PD induced restrictive lung disease..(rigid diaphragms and chest wall muscles.) PD is suffocating me at 43% vital capacity as my lungs collapse.”

.”

Atelectasis

I apologize for this post, but I needed to add it to my index…under aspirational pneumonia.

As one person reported: “In my case due to paralysis of chest muscles and diaphragms my lungs are collapsing from bottom up. about halfway. they fill with fluid at night and i call it waterboarding it feels like drowning and technically it is. Dry Drowning.”

………………………………….

Pulmonary complications remain a primary cause of morbidity and mortality in Parkinson’s disease (PD). Obstructive and restrictive airway deficits are related to disordered motor control of the respiratory musculature. Although this may sometimes lead to overt symptoms, such as stridor and respiratory failure, it more commonly results in silent aspiration and atelectasis, predisposing patients to pneumonia.

……………………………………………….from Pub Med:

CONCLUSION:

Silent aspiration and laryngeal penetration of saliva are common features in PD patients with daily drooling. The presence of hypoesthesia of the laryngeal structures and the lack of protective reflexes in such patients may play a major role in the mechanisms of SLP/SA.

………………………… also from Pub Med

Abstract

BACKGROUND:

Aspiration pneumonia is a leading cause of death in people with Parkinson disease (PD). The pathogenesis of these infections is largely attributed to the presence of dysphagia with silent aspiration or aspiration without an appropriate cough response. The goal of this study was to test reflex cough thresholds and associated urge-to-cough (UTC) ratings in participants with PD with and without dysphagia.

CONCLUSIONS:

UTC ratings may be important in understanding the mechanism underlying morbidity related to aspiration pneumonia in people with PD and dysphagia. Further understanding of decreased UTC in people with PD and dysphagia will be essential for the development of strategies and treatments to address airway protection deficits in this population.

In the cards

On December 29th I received my first container of Glyconutrients… So I am beginning a new product with the New Year. It is called ‘New Eden’    John and I are hopeful that our bodies respond for an improved normal.  I’d highly recommend you folks watch the interview that opens for viewing on this page at this link.    https://www.wellnessquest.org/                                                                                                                                                                                                                                                             

A word of caution

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.

I hope someone finds this information helpful.

Poling Update

As I reported earlier, I’ve learned about intentional walking… aka Fast walking. The goal is to get up to an hour a day… 3 or 4 times a week. So I was doing two laps around the block for John’s once around. But since implementing the poles’ John is able to walk faster, and I am pushed to keep up with him, so it has been super nice.

John says he can walk faster because he is putting his weight onto the poles which relieves his hip and leg pain. I have a walking partner and Pandora on my phone playing music from my pocket. The Distance we walked the last time was 1.25 mile. in 40 minutes. We have ventured further and further into our neighborhood. Life is good.

Sorry, I’ve been focusing on Christmas letters instead of writing on the blog… and I know, I somehow lost a bunch of links in the index that I need to fix. But I’m happy to report I think I am holding my own, quite well.

Urban Poling

I saw reviews on the Urban Poling Activator Poles on two different Blogs by PWP. So I Googled it, and watched YouTube ‘how to use walking poles’ by three different companies. I can see how using the poles correctly could benefit me, as I continue to do fast walking. Plus I can see my sweetheart benefiting from using the poles as well.

Unique Components of the ACTIVATOR Poles:
Button-Locking System: An easier and safer method vs turning locking systems.
New – Ergonomic CoreGrip (patented): Designed for improving core strengthening while providing greater comfort and supporting the wrist in a neutral position to reduce strain.
Wide Ledge instead of a Strap: To reduce the risk of injuries. A study by Knobloch et al. (2006) found the highest rate of injury for Nordic walking is when the person is still attached to the poles during a fall.
Bell Shaped Tips: Provide greater stability than boot shaped tip
3 Anti-Vibration Features: Reduce vibration and impact on joints
Carbide Steel Tip: Provides stability on slippery conditions and on trails & beaches.
Telescoping: 4′ to 6′ (121 to 182 cm). Poles are collapsible for storage & travel
New – ACTIVATOR2 Poles designed for taller individuals up to 6′ 4 and collapses shorter for travel 25″

The site suggested that rehab professionals are using the poles in place of canes and to reduce/delay the use of walkers.

The poles are very similar to Nordic Walking Poles, but the techniques taught for using them are a bit different. The hand shake goes to a more bent elbow and the poles don’t go behind you. https://urbanpoling.com

I purchased The companion combo, which was a bargain. Now my sweetheart can go poling with me. They arrived already (Merry Christmas to us) We watched the videos provided and adjusted our new poles to the correct height for a 90 degree angle at the elbow, and tried to practice the pole placement coordinated with arm swing and foot placement. First day we went out to walk on the pavement in front of our house. by the end of our little session, my husband was able to do it. Due to Mr. PD, my coordination isn’t so cooperative, so I will take longer… but I’m not a quitter.

We have been on three walks now. I’m slowly getting better, but I still have to watch my feet (a no-no) and concentrate. or I am stepping out on the same side as the pole. About ready to go out again. The weather is beautiful in central Florida… 78 degrees right now.. I’d better go before it gets too much warmer.

                     

The letter

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,