July 2019 – Standing up to Parkinson's

YoQi : Yoga + Qigong

I really wanted to do yoga, after listening to the presentation by Dr. Laurie Mischley 4 days ago… posted in my blog under the title ‘Science Based Nutrition’. but I found the exercise poses I tried moved my back wrong and I began to suffer severe headaches. When I was gleaning insights from Fred Phillip’s blog, after reading what he had to say about Qigong [HIS comments follow below the three links] I discovered some youtube links… tried them, had no ill effects, and actually enjoyed them! Enjoying exercise is key to finding something I will stick with. 🙂

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

I can do these in the privacy of my room here at the clinical trial, while wearing a headset.

https://www.youtube.com/watch?v=Y88zYo0YlOo

They are simple enough I can do them at odd minutes through out the day.

https://www.youtube.com/watch?v=EaEZVfhn07o

There are many other options for viewing, or connecting with an instructor.

…………………….. From Fred Phillip’s Blog:

Qi is pronounced chee and is usually translated to mean the life force or vital-energy that flows through all things in the universe and Qigong is intended to cultivate this energy. According to the National Qigong Association, qigong’s gentle, rhythmic movements reduce stress, build stamina, increase vitality, and enhance the immune system. It has also been found to improve cardiovascular, respiratory, circulatory, lymphatic and digestive functions.

I have been dabbling in qigong for a few years and I recently became aware of a couple of people who claim to have healed themselves of Parkinson’s through intensive qigong practice (up to three hours a day), which has inspired me to get into it full on!

Since intensifying my qigong practice, I have noticed that my balance is fine while doing the exercises … qigong has the same effect as flipping a ball. This is awesome and it encourages me to keep practicing!

There are many excellent videos on youtube to get you started and if there is a qualified instructor in your area, even better.

If you have difficulty standing unaided most exercises can be adapted to a sitting position.

I can’t say that doing qigong for three hours a day is going to heal you, but I do believe there are definite health benefits, so what have you got to lose!.

Deep Brain Stimulation and surgery

Although none of the participants involved in the clinical trial I am currently participating in… and since I have nothing new to report on our current status, I thought I’d share information on DBS… something I hope to never need, but I recognize it as a blessing for many.

Notes from the convention as passed on by Laura Kennedy Gould’s Blog : THE MAGIC TRICK-Life With Parkinson’s

Deep Brain Stimulation (DBS) – Hardware

Dr. Kelly Foote of USA spoke on the topic of deep brain stimulation (DBS). Deep brain stimulation is used for treatment of PD symptoms, particularly tremor and dyskinesia. In his opinion, the placement of the probes is the most important aspect of this surgery. The surgeon, neurologist, and hardware programmer collaborate to choose the best brand of programmable hardware (with up to 8 contact points), depending on each patient’s unique situation. Hardware includes: Medtronic, Abbott’s St. Jude, and Boston Scientific. Each brand has pros and cons. In the past, deep brain stimulation hardware had challenges with replacing batteries and wire leads breaking in the system. Both have been reduced in the new hardware with rechargeable batteries now an option and the newest hardware being equipped with zero-wire-lead-breaking technology.

Deep Brain Stimulation (DBS) – Programming

Delving further into deep brain stimulation (DBS), Professor Michele Taliati, also from the US, discussed programming DBS devices. He claims that DBS programming is most important. Either one or two probes (bi-polar) can be placed in the brain. Two probes can reduce side effects. Programming allows for the adjustment of pulse width, amplitude and rate. He also introduced the concept of “impedance”. The medical dictionary defines it as “the resistance in alternation current circuits.” Medical equipment is often rated according to impedance to allow for optimum performance by matching impedance rates. During the question period, he noted that patient behavior can be changed by DBS.

………………….. Comments taken from conversations on community chats:

Since my deep brain stimulator surgery, I am able to walk as good as before I was diagnosed with PD. I can really peal out with perfect arm movement. I find myself humming while I walk. I wish this freedom to walk on all of you. If it isn’t going to happen at least exercise a little each day. If you don’t use it, you might lose it.

………………………………..

From a 70 yr old in Australia:
I have had the deep brain stipulation operation, and it has worked tremendously, no more tremors, though my balance is off, and my writing is horrible.
I am fairly fit l keep active by preparing a turf wicket for my cricket club, which I am a life member. I do swimming exercises once a week, and I have a wonderful wife who looks after me, for the past 45 years l was diagnosed in 2002 but l never excepted it until 2003,l had plenty of tremors and movement disorders, where l couldn’t control my arms and leg movements had the dbs operation which has been a god send, when people who saw me a couple of years ago they can’t believe how much l’ve changed for the best”

…………………………

I had DBS in 2012 and it has. Done wonders for my tremors but it cost me my balance. I now have to use a walker or a wheel chair

My husband has had PD for 33 years. Been there. Thank God for the miracle of Deep Brain Stimulators that have been a literal life saver. He had this procedure done in 1999 through the VA.
Talk to your doc about DBS. They work. My husband went from a wheel chair and hospital bed to being able to function fairly normally. He too was on the verge of giving up but the DBS gave him hope and a new drive for life.

……………………………………………

It turned out great. I’m able to do things I haven’t done for years! Lott of energy. My son says “i got my dad back.”

If you qualify do it. And if you can go to Shreveport for the surgery you’ll have the best care snd surgeron who does DBS.

……………………………………………..NOT for everyone 😦

My dr indicated that I am not a candidate for DBS because I now have significant cognitive impairment. It is difficult for me to tell time and make any executive decisions. Recently, when I needed to sign my name, I couldn’t remember how to do that. I also have the rigid type (very rarely any tremors). Do you have any input on DBS regarding a person with my limitations? I was diagnosed about 18 yrs ago and had symptoms 5 years prior to diagnosis.
Thanks for any knowledge you have about DBS suitability/ limitations.

Science Based Nutrition

The 50 minutes it will take you to listen to the talk by a Doctor, who is a nutritionist.. NOT a dietitian, will give those who do not yet have a PD diagnosis insights on how to avoid or at least slow the possibilities of receiving a diagnosis. And she provides encouragement and hope for those who already have the symptoms. IT IS WORTH YOUR TIME

Placebo or the Real deal

I have been baffled, because not every one in the study has the same restrictions on eating.

Where as I am not to eat for three hours prior to a dosing or half an hour after I take the pill, another test subject is required to go eleven hours without food and only eats twice a day.

Although we arrived for the study on the same day, they told him he had to wait an extra day to begin his dosing, because his medication hadn’t arrived from Belgium until then. (Weird)

{ I just noticed the rule: i before e, except after c doesn’t apply to the word weird…} (Weird)

Anyway, the study partner with the med from Europe (I’ll call him ‘E’) has been experiencing phenomenal improvements i.e. reductions in his symptoms.

When ‘E’ arrived, he used a cane, due to instability. soon he no longer felt a need for a cane, but he was still shuffling his feet. This morning, as I watched ‘E’walk down the hallway back to his room, ‘E’ was picking up his feet… an obvious confident walk with no shoe sliding!
It was ‘E’ who pointed out to me, that he could now snap his fingers. (When I tried snapping my fingers today, I could with one hand, barely.. but not the other… typical ups & downs of PD)
‘E’ reports he his speech & articulation are much improved.
‘E’ reports only a slight tremor in one hand remains.
‘E’ was excited this morning, to report he hadn’t drooled for the last two nights, as noted by the fact the sleeve of his sleeping attire had remained dry

As I visited with ‘E’ this morning, as we discussed the differences in our protocol, he suggested how I might determine if I was receiving the placebo. He said he didn’t swallow the capsule (cheeked it) then he allowed the capsule to dissolve in his mouth. Once was enough. His expectation was that if it was a sugar pill, it would be sweet. ‘E’ said what hit his taste buds was not sweet. Cautioning me to have water close, to wash the pill on down after it dissolved because what he had tasted horrible!

Naturally, I had to try it for myself. First off, it was not sweet… but it was nearly flavorless, but it did have a slight aftertaste. So… am I getting the placebo? or does ‘E’ have more keen taste? Do I have the test med, at a much lower dose? I’ll probably never know.

But what I do know, is there is something coming down the research pipeline that I hope will be available to turn back the symptoms… hopefully in the not too distant future.

Strange Happenings

I want to tell you about our sleeping quarters at the clinic where the Parkinson’s clinical trial is being conducted. There are 9 beds in the ward that John & I were assigned to. We could have our choice of beds. Wouldn’t you know… I picked a bed with a mind of its own?

We have individual curtains which could be pulled around for privacy, but no need. There are currently only 6 people here and with three wards, we have ours to ourselves. We are free to stay in our room, or sit in the dining room, or one of the two other rooms designated for TV watching, game playing, etc,

There is no specific time for waking up or retiring for the night. On the free days when there are only vital signs and pills to be taken, each participant has a few guidelines. For me, I am not to eat anything for three hours before they give me my dose (capsule) and I am not to eat anything for at least half-an-hour after dosing. I get my meds at 8:25 a.m [so breakfast is served at 8:55] Then the evening meal is served at 5:00 pm {I need to be through eating by 5:25} And my evening dose is 8:25.

I have read 3 novels & John is working on his third jigsaw puzzle. This is day 12 of the 30 day study.

On our first night here, I was pretty soundly asleep, when I heard the motor on the bed and it elevated my head slightly, and stopped. Due to my sleepiness, I didn’t rouse much. After the bed’s bizarre behavior had happened twice more, I had awakened sufficiently to recognize the need to trot to the little girl ‘s room. “What the?” When I returned and started to get into bed, the top half of the bed was all the way up! Perpendicular! As if sitting up straight!

The bed’s shenanigans had aroused John enough, that he thought I was having a hard time sleeping, not realizing I wasn’t in the bed, till I returned from the bathroom. We unplugged the bed, after coaxing it to lay back down.

When we reported the malfunction to the medic, Doug, in the morning, he related what had transpired, the last time the dorm had been used. The clinic had had a larger study going on and the room had been full of ladies. They had come running out of the room declaring one of the beds was possessed. He thought they were just messing with him, talking about poltergeist. The bed never acted out when he was in the room.

Doug had a good laugh, when John told him, ‘When he’d plugged the bed in, he’d noticed that the grounding prong was missing. So we’d figured that must account for the strange happenings.’

React with gratitude

The staff at the study site are doing their best… When I toured the facility, I asked if there was to be any exercise equipment, since an exercise regiem is considered to be the #1 most proactive thing Parkys should have. The medic said, “I understand they hae been ordered, but haven’t arrived yet.”

After my big data collecting day had passed, I asked, “Where is the exercise equipment.” After inquiring, the medic came to say, “There was a change in plans, and they have contracted with ..” “…. from an exercise gym, and they are supposed to have someone here tomorrow, to work with us in a group exercise class. They were a no show. 3rd time should be the charm, right? When they called to find out what happened? “… the person assigned just left on vacation… they will be here when they return.” REALLY?

I have been standing between two dorm beds. doing squats & leg lifts [ok,,a couple times] Then another study participant took matters in his own hands, saying he would like to organize a stretching exercise class. Today, I accepted an invitation to go out onto the patio for some stretching exercises to the accompanyment of ‘Oldies’ music.

After 12 minutes of exercise, he had us take three laps around the perimeter of the patio. This is where I stepped up, stating they should Swing their arms, while striding. Then, after swinging a little to music, our leader began to snap his fingers, demonstrating his RETURNED skill. Stating he hadn’t been able to snap previous to the start of the study.

Primarily this is done by building tension between the thumb and another (middle, index, or ring) finger and then moving the other finger forcefully downward so it hits the palm of the same hand at a high speed

I’m pleased to report I also have noted improvements. I wrote an address for John yesterday and he commented, “That is the most readable thing you have written for quite a while.” And knowing I had previously been unable to snap my fingers, I was delighted when I also could snap my fingers.. with both hands! This action precipitated conversation, with people telling me my face is more animated than when I arrived, and I smile.

Our exercise leader confided that one of the medics said they had seen a lot of improvement in him over the past week. I’m thinking it has been multiple strokes of good fortune that I learned of this study, that I was accepted to participate and I’m thinking did NOT receive the placebo.

There is the story of the alcoholic father with two sons. One follows in his father’s footsteps and ends up struggling through life as a drunk, and the other becomes a successful, sober businessman. Each are asked: “Why are you the way you are?” The answer for both is the same: “Well, it’s because my father was an alcoholic.” The same event, the same childhood, two different outcomes. This is true for almost all situations — what happens to us is an objective reality, how we respond is a subjective choice. The Stoics would say that we don’t control what happens to us, all we control are our thoughts and reactions to what happens to us. Remember that: You’re defined in this life not by your good luck or your bad luck, but your reaction to those strokes of fortune.

My reaction? Be grateful, not just in my heart, but EXPRESS GRATITUDE!

Beauty among the Struggles

This thought was taken from a site with a goal of Marriage strengthening… But I loved the sentiment and thought it definitely applies to many of the varied struggles associated with Parkinson’s.

Perhaps you can help me build a list of Beautiful side effects of a trial: What follows are quotes I have taken from other posts on community chats: [I’ll include additional posts on beautiful side effects, because I don’t want to make the read too long.]

…………………………… Take every opportunity to do things that you want to accomplish now. I have traveled more and experienced more since my Parkinson’s diagnosis than before.

…………………………… As you can see I live with hope; having found a silver lining of sorts in my diagnosis. I have been given a ticket off the stress track of teaching and performing and now I nurture other talents the Lord has given to me. Through all of this, I have met so many wonderful and caring people

…………………………… We are pushed to make decisions………. Now, I want you to think about this – you can’t stay in Monopoly jail forever; by your 3rd turn, you must roll a double, pay £50, or use a “get out of jail” card. It’s one of those 3 options or you lose the game and forfeit all you’ve worked hard for. Similar rules apply in this game called life – we can’t remain within the confinements of anxiety, bitterness, jealousy, hurt, anger, fear, denial, betrayal, self pity… and expect to win. We will lose. A time must come, dare I say the time is now, when we must make the decision to exit whatever prison we find (or have put) ourselves in. That decision could take on different forms – it could be accepting that apology you never truly received and moving on from past hurts, it could be swallowing your pride and making that phone call, speaking out loud or remaining quiet, starting a new venture or ending an old one.

……………………………..Regarding Rock Steady Boxing……….. Most people in our class have never boxed before (non contact boxing by the way – hitting a bag, never a person!) There are people who come in with walkers, on riding scooters, even wheelchairs. Exercises are modified individually to each participant. The coaches are wonderful and the camaraderie with others who have PD is life changing.

………………………….. We become less vain. …..”Today I went over an invisible border. A week ago I made an inner decision: everyone can now see my tremor”. ………………………….. . Solving the puzzle. Worry about others, more than we worry about what people think of us

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…………………………………… If I had taken the diagnosis of PD for face value and approached it as something that was outside of my control, I would have never hopped back in the driver’s seat of my life.

………………………………….. We are enabled to connect the dots….. “The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.” Ralph Waldo Emerson

In good hands

As I’ve visited with the medics implementing the guidelines of the study, without exception, have seemed to me to be: caring, supportive, conscientious professionals, with prior paramedic &/or emergency trauma experience. One even maintains a job in Lady Lake, going on ambulance runs on the weekends.

I saw the Study Doctor again for a brief evaluation. Besides listening to my lungs he asked how things were going… and I reported I get hungry in the night. During the night, I had helped myself to four snacks. They will most likely be putting increased appetite as a ‘possible side effect.’ Which may not be a negative for me, since my last home scale reading was 105.

I do have to observe times for when I eat. Breakfast can’t be closer than 1/2 hour after dosing, And The evening meal has to happen at least 3 hours before the evening dose… so dinner at 5 to 5:30 prior to dosing at 8:30. It is no wonder I am hungry later… We haven’t been in the habit of eating our dinner before 8:30. BUT I think part of it also is the diet. When on Ketogenic diet, I didn’t get hungry. But, there is so much starchy foods and sugars here, I get full, but not satisfied.

Tonight, I held out half of my tuna sandwich and cherry pie in ziplock baggie, and put it in our room for when I wake up at midnight, 2:30 & 4:30 and can’t go back to sleep, till I eat something.

Running report

No, I’m not running away. And, actually, I haven’t been getting any exercise. I am just trying to create a continuing dialogue, to share my experience during the study.

They administer 1 dose, every 12 hours… 1/2 hr prior to breakfast & in the evening… so I have taken five capsules so far.

The process provides us with plenty of down time. After the Spinal tap and first day of blood draws, I have five days to rest. Day 6 is multiple blood draws, finger pricks and EKG. And if I understand correctly, there are another five days of rest, followed by another day of multiple blood draws, finger pricks and EKG. with the pattern following until the day of the second spinal tap which is expected to go very similar to the first day… except I trust the spinal tap will go more quickly. I haven’t asked if there is a weaning off of the meds period, but I know the last day, I’ll be meds free… but remain here just for observation. They are really cautious.

Yesterday, when I was transitioning from one room to another, the kitchen help saw me stumble/stagger and panicked. She talked to a tech and they said they were going to recommend I use a cane. Mind you… I have never fallen. Then, when the Main study doctor was doing a neurological exam on/with me today, he volunteered the opinion. As the medication builds up in my body, I should see a lessening of symptoms… so he opted to take a wait and see attitude.

I made the cut!

On June 21st, I told you I was being evaluated for a Parkinson’s study. I made the cut! I reported and settled in on Wednesday. Today, I am cutting and pasting from my report to our children about yesterday’s experience:

Yesterday, they took my husband/caregiver & I to Smyrna Beach, 45 minutes ride away for the spinal tap. I commented that I was surprised that they were taking us so far. Dr ‘D’ explained, ‘The office where we were going was the closest private Physician, who do spinal taps, they had been able to locate other than emergency rooms. They have an exam room set aside for the research group to use to follow the protocols for the specific study. So it was there, where they did pre-medication [ EKG, took vital signs and began extracting vials of blood and finger pricks and collection] Then I was given the morning DOSE. Then, at designated times, they did post-medication [ EKG, took vital signs and began extracting vials of blood and finger pricks and collection] 3 more times. Then two hours after taking the pill I was taken to a different room, where I met the Dr who did the spinal tap. Then, returning to the previous exam room. I was to spend an hour lying on my back. Then once again, [ EKG, took vital signs and began extracting vials of blood and finger pricks and collection] , before then returning to the research clinic in DeLand, where blood pressure, another vial of blood and finger prick collection were taken every two hours. four additional times.
I wanted to tell you about the spinal tap. There were several large rounded pieces of equipment… and attended by three or four additional attendants.. each wrapped in heavy led aprons. I was seated on an exam table encircled by it all… and asked to round my back. You can imagine my surprise, with the doctor’s first words…at first glance, “I see you have had back surgery.” I of course emphatically stated ‘No.. I had not!’ Then, upon closer examination, he marveled that the deep crevice running down my spine was a natural formation! He proceeded to use a local anesthetic and then attempt to thread a probe toward the target. I kept feeling pricks and other sensations on the left side of my spine, but felt nothing on the right side I think everybody (but me) were probably watching the monitor screens… which there were several of. The doctor kept saying ‘Sorry’ then he would poke some more .. then another ‘sorry.” After what seemed like at least twenty minutes, He said. “I’m going to have to try higher up. It is simply too tight, and I cant get in!” So someone cleaned my back, and they sanitized and administered more local anesthetic. After that, it went pretty quick.

Over all, I can’t complain about the spinal tap, because on a scale of 1 to 10, I’d say pain was only a 2. But, I couldn’t say my dignity/modesty was intact.