Blog 9) Orthostatic Tremor and a Walk in Faith

9) Orthostatic Tremor and a Walk in Faith.

Oh my goodness.
Are you still here. 😂
I have depleted my mind.
Therapeutical writing……no it was brain exhausting.
Blog 9 in my Orthostatic Tremor series, ENDS here.

I am old, worn out with Chronic auto immunes and now OT ;
ORTHOSTATIC TREMOR AWARENESS BLOG – in my elder state, I apologize for repeating stuff.

I believe I included in blog 5, my encouragements with a couple of book recommendations and scriptures.
I am aware that some reading this may not join in with my Faith.
But that is what I have to offer.
I invite you to read what is personal to me.
Or you may want to not read of my faith.

It’s up to you.

This is an older blog of mine.
Go read it and come back as I try to finish WELL with this OT Awareness Blog) 9
https://happytrails2u.blog/2016/06/29/my-jesus-2/

Regarding my Orthostatic Tremor, in the words of Andrew Murray from his book, “Jesus Himself”.

“Oh! my Lord Jesus, though I do not understand it, though I cannot grasp it, though my struggles avail nothing, I am not going to let Thee go. If it is possible for a sinner on earth to have Jesus every day, every hour, and every moment in resurrection power dwelling in his heart, shining within him, filling him with love and joy,—if that is possible, I want it.”

(Many of Andrew Murray’s books are on Amazon for free kindle downloads and also utube has many, many of his books to listen to audibly for free.)

The above quote set my heart towards Jacob in Genesis 32:22-30
Read, study it and meditate on it and please take it personally.

I don’t like to say favorites in the Bible, although this passage would be a mark for me for all my life as God’s child, restoring me over and over – I go back to it when I audible pray fervently, pouring out and then receiving holy restoration in my walk.

And now it is fitting with my Orthostatic Tremor journey too.

After Jacob offered up to Esau a present of peace he entered into deep fervent prayer. I can’t tell it quite like my faithful study partner,
Mathew Henry, breaks this passage down so well in his Bible commentary;

Genesis 32:24-32
A great while before day, Jacob being alone, more fully spread his fears before God in prayer. While thus employed, One in the likeness of a man wrestled with him. When the spirit helpeth our infirmities, and our earnest and vast desires can scarcely find words to utter them, and we still mean more than we can express, then prayer is indeed wrestling with God. However tried or discouraged, we shall prevail; and prevailing with Him in prayer, we shall prevail against all enemies that strive with us. Nothing requires more vigour and unceasing exertion than wrestling. It is an emblem of the true spirit of faith and prayer. Jacob kept his ground; though the struggle continued long, this did not shake his faith, nor silence his prayer. He will have a blessing, and had rather have all his bone put out of joint than go away without one. Those who would have the blessing of Christ, must resolve to take no denial. The fervent prayer is the effectual prayer. The Angel puts a lasting mark of honour upon him, by changing his name. Jacob signifies a supplanter. From henceforth he shall be celebrated, not for craft and artful management, but for true valour. Thou shalt be called Israel, a prince with God, a name greater than those of the great men of the earth. He is a prince indeed that is a prince with God; those are truly honourable that are mighty in prayer. Having power with God, he shall have power with men too; he shall prevail, and gain Esau’s favour. Jacob gives a new name to the place. He calls it Peniel, the face of God, because there he had seen the appearance of God, and obtained the favour of God. It becomes those whom God honours, to admire his grace towards them. The Angel who wrestled with Jacob was the second Person in the sacred Trinity, who was afterwards God manifest in the flesh, and who, dwelling in human nature, is called Immanuel, Hosea 12:4, Hosea 12:5. Jacob halted on his thigh. It might serve to keep him from being lifted up with the abundance of the revelations. The sun rose on Jacob: it is sun-rise with that soul, which has had communion with God.

CHANGED HIS WALK
I like this story of Jacob because I know how broken I have felt at times and I know how broken each of us feels at times. We wrestle life. In those times, I have prayed fervently with sincerely needing to feel closer to my Father/Lord and wanting clarity. An intervention prayer such as Jacob’s wrestling and pleading for a blessing, should change his walk and cause him to rely on God for the great journeys he had ahead. OT has brought me closer in need and reliance on a close personal walk. My OT prayers were surrendering to a new change in my life. And it is okay. I seek the face of God.

Genesis 32:31 NLT
[31] The sun was rising as Jacob left Peniel, and he was limping because of the injury to his hip.

Orthostatic Tremor ….

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Blog 9)

To move from blog to blog in this series you will find towards the bottom of each blog, just above the calendar, you can navigate from blog to blog.

Kim of: http://happytrails2u.blog

Blog Series for Orthostatic Tremor Awareness

Blog 1)

Blog 2)

Blog 3)

Blog 4)

Blog 5)

Blog 6)

Blog 7)

Blog 8)

Blog 9)

Blog to follow; 🤔

Please feel free to reply, your replies are valued and appreciated.
Be kind and helpful in your replies.

AWARENESS of Orthostatic Tremor is the goal.
Attention for research purposes is the BONUS.

Use the share button.

Blog 8) Relevant Research and Resources on Orthostatic Tremor

Blog 8)
Gee whiz when I began to realize the rarity and lack of clinical awareness,
I started loading every research article I could find, along with every OT support site and then began studying the people on the sites, their history, and stories.
While my physician said –
“Nope never heard of it.”

Why have I contributed so much effort to OT awareness?
Why have I invested so much time and energy towards OT awareness?
Why have I blogged so relentlessly with a whole series toward ORTHOSTATIC TREMOR AWARENESS?
Regardless of September being Orthostatic Tremor Awareness month…..
When I read the quotes regarding its rarity from leading researchers, I simply feel challenged. If I were to be analyzed with the “fight or flight” theory, presently – I am in fight mode. I feel like “unawareness” and “unknown” are walls to be kicked down.
Read the following quotes within the research articles.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5039949/

“Orthostatic tremor (OT) remains among the most intriguing and poorly understood of movement disorders. “

“Owing to its rarity, the current understanding of OT is limited and is mostly based on small case series or case reports.”

“Scientific understanding of OT is in its infancy.”

“OT is not widely recognized by physicians who are not movement disorders experts, which often results in misdiagnosis for the unfortunate patients, who then may be subjected to inappropriate or unnecessary tests and treatment.”

https://clinicalmovementdisorders.biomedcentral.com/articles/10.1186/s40734-016-0048-5

“Primary orthostatic tremor is a rare disorder that is still under-diagnosed or misdiagnosed”

“We review the clinical signs of POT that may help to increase the awareness of doctors and improve the diagnosis accuracy”

“Nevertheless, this condition is relatively easy to diagnose when you listen carefully to your patients, as they often report the main clinical features: lower body tremor activated upon standing (with feelings of unsteadiness and decreased time immobile in the upright position) which is improved by walking and absent when sitting or lying down”

https://www.nebraskamed.com/orthostatic-tremor-imagine-being-able-to-walk-but-not-stand

“Never heard of orthostatic tremor (OT)? Most physicians haven’t, let alone the general public.”

In collecting articles and research studies, I discovered most of them to be outdated. Many are articles of opinions of research studies. There are articles of updates and republishing. Nothing new comparatively one to another. Cerebellum involvement studies. Classification opinions regarding hertz values. All very interesting articles and resources, just many are simply outdated.

Mayo Neurology research has delivered the most current conclusive research of 2019;
https://tremorjournal.org/article/10.5334/tohm.513/

Clonazepam has been the first-line drug of treatment used for many years and seems to present good results for many and not so good for many. The downside; our body builds up a resistance maybe as OT progresses. Many patients seem to have an intolerance to the side effects. The Mayo Movement Disorder Neurologist was careful to tell me that treatment is very limited, with sometimes minimal results.

It seems most patients who have had OT a long time, chose to not take medication, due to side effects, mainly drowsy with slower thought processing. We are all different. Gabapentin along with the Clonazepam seems to be a combo with many OT patients. Primodine is the second line in treatment.
In more recent years there has been a push for DBS (Deep brain stimulation). I have observed on the support boards of those who have had DBS; it’s invasive, expensive, and insurance does not pay for it. I have heard of successes and also not-so-successful stories with DBS procedures. I would believe it probably is a last resort for the more severe cases and patients with medication-refractory OT (term used when they are not responsive to medication.) DBS is a neurosurgical procedure that uses implanted electrodes and electrical stimulation to treat movement disorders. Maybe future improvements will come with DBS and insurance will be forced to consider the quality of life improvement.

One of the newer technologies in process for treatment
https://institutducerveau-icm.org/en/actualite/a-new-non-invasive-therapy-for-the-treatment-of-primary-orthostatic-tremor-pot-trans-spinal-electrical-stimulation/ a quote from the above article.
“A study led by Jean-Charles Lamy, member of the Mov’it team and operational manager of PANAM the platform for the exploration of movement at Paris Brain Institute has just shown, thanks to research, that trans-spinal electrical stimulation improves both the time in a standing position and reduces the amplitude as well as the frequency of tremor. This study is published in the journal “Movement Disorders”.

Below Dr. Karen D. Sullivan’s Orthostatic Tremor videos, she is very informative and gifted in speaking directly to OT patients. She is a strong advocate for patients with Orthostatic Tremor. Below are her utube videos that have helped so many patients better understand OT. She is a doctor of Neuropsychology.
Orthostatic Webinar preview https://youtu.be/ea6yHr4ssPw
Orthostatic Tremor https://youtu.be/i58rPitK5uw
Orthostatic Tremor and Gait https://youtu.be/iU3dOqBkoHA
She is also on Facebook called, I CARE FOR YOUR BRAIN

Below is a fairly current (2019) research on DBS (from Mayo Clinical research)
https://cp.neurology.org/content/10/4/324

I noticed one of the researchers, being Dr. Bryan Klassen, the Movement Disorder Neurologist who administered my EMG (electromyographic) analysis at Mayo. The classic test of determining and confirming OT.
Mayo is an impressive American medical legend, globally. Ken Burns produced a 2-hour video of its iconic history. It can be accessed on PBS.

https://www.pbs.org/video/the-mayo-clinic-faith-hope-science-czhdtb/

As I realized Mayo of Rochester was my hope for processing expedient diagnostics, I ask to be referred to Dr. Anhar Hassan, who had been involved in the most recent advanced research study completed in 2019.

My original appointment was with her. I was so disappointed when on the day we drove into Rochester, MN., I got a call informing me; she had something come up and was unavailable. My husband comforted me in that they were getting me in with another neurologist who would examine me and begin the process of diagnostics. We processed through in 4 days last mid-April 2021 and returned the second week in May for results and a confirmed Orthostatic Tremor diagnosis.

I am presently on Clonazepam 0.5 twice daily along with Gabapentin 300mg 4 times daily. I can stand still for around 5 min or so, though I feel uneasy as I stand. If I shift side to side, I can last around 15 minutes and then I sit. Sometimes if I push my limit, I get a weak ill-feeling, break a sweat, and feel nauseous. The onset of leg tremors upon standing began for me in February 2021 with 1-2 minutes induced leg tremors, consistently. Towards evenings tremors were immediately and present with slow walking as I got to bed very early trying to put them to rest. I could feel them advance upward with evening fatigue and spinal back burning after a day’s fight to be normal. This was after many years of being unable to stand still for over 15-20 minutes, before having, an overwhelming need to sit down. (My story is in blog 3 of this Orthostatic Tremor awareness series)

This is an article By Diego Torres-Russotto, M.D., Neurologist – he leads out in the Orthostatic fight with a wealth of knowledge – he is our advocator.
There are also a series of uTube videos to be found of OT conferences he has been presented in. (Search them out on UTube)

https://www.nebraskamed.com/orthostatic-tremor-imagine-being-able-to-walk-but-not-stand

With his opening quote-
“Never heard of orthostatic tremor (OT)? Most physicians haven’t, let alone the general public. But for the small number of adults who develop OT around midlife, it’s very real, very life-limiting, and very, very hard to explain to others.
Patients with OT can walk quite well at a brisk pace. But if they slow down or stand still they feel that their legs no longer hold them up! It has been compared to riding a bicycle: you’re fine when you’re riding along, wobbly when you slow down, and unable to stay upright when holding still.”
(The above word picture is true – you slow down on a bicycle and you fall over without propping.)

In this article, he mentions Gloria Nelson MacWright he quoted in tribute to her this, “After her diagnosis in 2000, Gloria Nelson MacWright created a website called http://www.orthostatictremor.org to see if there was anyone else out there. She began hearing from others worldwide, and now over 1,100 people have registered on the site to create the Orthostatic Tremor Community.”

Below is her site that she contributed for awareness and help.

https://www.orthostatictremor.org

I appreciate that she logged her journey for us in this article below;

https://www.orthostatictremor.org/my-experience.html

And also join in with interactive support on Gloria’s resource of helpful support;

https://www.orthostatictremor.org/phpBB3/index.php?sid=8d6b685202e07d15e323c3a001458729

This U.K. National Tremor Foundation site is great to help to inform others with simple details;
https://tremor.org.uk/orthostatic-tremor

If you go on Facebook and search; Orthostatic Tremor groups, you will find several that have very random postings, from the U.S and the U.K., I found support in them all helpful, although Australia has the most volume in traffic postings and people involved, I appreciate their support and the work they put into helping encourage and inform their members, Primary Orthostatic Tremor on Facebook.

OT Being a marginalized community within research, support groups are essential. We learn from one another.
Hopefully, research may learn from us with observations into our groups.

Research you are welcome, we invite you.
Go to the support groups and study patients with their experiences.
Observe the ages, there are many young patients with OT.
Observe that many of us who are older, tell of an inability to stand for very long when we were younger.
Observe that we have spinal issues, include that in your research.
KNOW that our medical communities do not know of or have ever heard of Orthostatic Tremor.
Being very thankful for research, I pray for clinical curiosity to be a driving force among the many researchers and physicians who do care about Orthostatic Tremor. Please help us in making Orthostatic Tremor KNOWN, so that diagnostics have a path to us.

Below is our National source for calculating rare diseases
2021 Orthostatic Tremor has been documented with 390 cases in our nationwide. (US)
https://www.orpha.net/orphacom/cahiers/docs/GB/Prevalence_of_rare_diseases_by_alphabetical_list.pdf

Once again Mayo Clinic has completed the most current, conclusive article to date. It would be my go-to for valid information.
https://tremorjournal.org/article/10.5334/tohm.513/

Please feel free to share this blog and also encourage your friends, loved ones, and your health care team to share.

To share this blog simply touch the FB share button at the bottom. Or hold down on the icon button below and chose to copy.

Blog 8)

To move from blog to blog in this series you will find towards the bottom of each blog, just above the calendar, you can navigate from blog to blog.

Kim of: http://happytrails2u.blog

Blog Series for Orthostatic Tremor Awareness

Blog 1)

Blog 2)

Blog 3)

Blog 4)

Blog 5)

Blog 6)

Blog 7)

Blog 8)

Blog 9)

Please feel free to reply, your replies are valued and appreciated.
Be kind and helpful in your replies.

AWARENESS of Orthostatic Tremor is the goal.
Attention for research purposes is the BONUS.

Use the share button.

Blog 7) Helping your family members and loved ones understand Orthostatic Tremor.

7) Helping your family members and loved ones understand Orthostatic Tremor.

If you have been reading along throughout this Orthostatic Tremor blog series and missed out on a detailed description here is an explanation directly from a Handbook of Clinical Neurology, Vol. 100 (3rd series) Hyperkinetic Movement Disorders

W.J. Weiner and E. Tolosa, Editors

Fig. 35.1). Characteristically, the symptoms improve markedly on sitting or walking. The urge to sit down or to move can be so strong that patients often avoid situations where they have to stand still for a period of time, such as when queuing. When forced to stand still, some patients try to shift the weight from one leg to the other, walk on the spot, or lean against a wall. Patients are eventually forced to sit down or walk after a short time, ranging from seconds to several minutes, depending on the severity of the disease. As the disease progresses, tremor may encroach upon the stance phase of gait. Under these circumstances, patients have difficulty walking slowly and managing stairs. Although OT is frequently considered a benign disorder, inability to stand still affects activities of daily living and has a serious impact on the patient’s health-related quality of life. One study found that 11 of 20 OT patients were depressed as assessed by the Beck Depression Inventory (Gerschlager et al., 2003).

It is a progressive neurological disorder of the cerebellum.

The above is a clinical explanation. And very outdated (2003) in terms of current research. Though any information googled on current research is an example of stagnation for Orthostatic Tremor research – same information….

Research does not know what causes it, there is no real conclusive treatment option, no cure. Research has only figured out the most defined way to diagnose and classify it through EMG testing. The process of time has proved it to be progressive. Because of its rarity, it is not legitimized within most major medical facilities. It is yet unknown and unheard of by almost all the medical community except for Movement Disorder Neurologist. The medical world does not understand. We who have it do not understand. How can the people of our lives understand? 

Being recently diagnosed with OT I am fresh for observations. I have read all the research. I have joined all the support groups. I have blogged my journey well and am diligently leaving a path for all those who may find themselves in this rare unknown neurological disorder of Orthostatic Tremor. I am yet in the processing stages and will be for a while.

This blog 7 is for those who have loved ones, relatives, or a friend with OT.

I hope to help you understand…..how to comfort, love, and support your OT loved one, relative, or friend.

We can’t stand in a line. How do you explain that to strangers, when you walk up looking normal? Even registering, standing in line in a medical setting. 

We feel ill at ease where we once felt confident going in and out of public places. It’s not because we are old. It’s not because we are “lazy”. The battle we fight is to stay connected and valid. One of the things we need most is for the people who surround us in our lives to understand these things. Please google Orthostatic Tremor, study it, and place yourself inside the battle with your loved one.

Empathy is the one thing you can contribute.

Even when you know it well, you will forget. My husband knows it well, he has moved through this past year with me when neither of us understood what was going on. We both now know fully all there is to know about OT. And still ……I have to say to him – “I have to sit down.” We may walk out into the yard and we stop to talk and I say – I have to sit down or walk. He may grab the grocery cart to push it for me as he has for 42 years and I say, give me that cart. 😊 He may stall out doing something as we move together and I keep walking. When we go into a store together I’m like Flash Gordon, unless I have a cart to lean on. And many times when we get to a checkout line, I just walk on out to the car. I have to understand that my husband is also processing, adjusting, and thinking of the progression of where it may lead.

I like to think positively.

My husband has had a few cooking lessons and I laughed as he slowly realized mid-way through chicken pot pie…..it was not as easy as he thought it would be. When we got my rolling kitchen stool that helped.

This whole year has been a transition.

I was very emotional in the beginning, with fear and so sad that I would become a burden on my husband. Not be fully me. I thought I was losing myself. I was on a passage of grief. My husband convinced me – We are a team. I found peace and also strength as we found a path to Mayo Neurology Clinic of Rochester; a diagnosis, answers, and direction. Though it is not an easy direction. OT is now a part of our lives.

To you who are loved ones and family members; 

Ask your OT person – how are you doing? Speak concern. Be concerned. Be understanding.

Otherwise, we may think you don’t care. When we are emotionally dealing with what is so evident to be a transition into a progressive impairing state in our lives. 

Be present.

Show you care.

Feeling loved is a healing power, mentally and physically.

Depression comes with Orthostatic Tremor.

Strife and stress is a physical agitator. I will confess; I defriended a couple of FaceBook hostiles, as I reduced stress in several areas. Turned off the news too.

I have been adjusting my life accordingly without any apologies.

We present well. It’s an invisible disorder for the most part.

I like to be upbeat – I am an optimist, but all the above applies.

I love to visit with people, but if I am standing; (in my mind) I am fighting a battle you can not see. I sport a great sense of humor and a mind full of Kim input, but my stander upper is broken.

I went to church the other day after a very hard week and many people ask, “how are you doing”? I said, “fine”. I made it through church services. But missed a couple of other later church activities – please understand. I am the pastor’s wife, so I have thoughts of – what are people thinking? My husband will say, “It does not matter what people think”. I now agree.

I am good in the 1st half of a day, my decline in energy is around 2-3 pm with major fatigue of auto immunes and Orthostatic Tremor.

We who have OT;

“We are fighting a battle you can not see.”

It concerns me when I cruise through the support groups and see those with broken hearts because their families and friends do not understand and say or imply cruel unsupportive things.

I read all the answers of support with thankfulness to those who give encouragement and wise advice. But I think, how sad that encouragements come from so far away, from people who are strangers and not from those of their surrounding lives. This angers my rebel heart that while someone is fighting a physical battle the worst of their battle comes from those who should be holding them up with love and support, joining them in their battle.

– Have printouts of information to give for written understanding.

– Share this blog site with them.

– Ask your family members to join your OT support group; within that support group, they will discern from others with OT and recognize ways to support and understand you.

– Value the ones who come along beside you. Express your appreciation.

– Let go of those who do not.

– Husband or wives, daughters and/or sons, you are the front line. Study Orthostatic Tremor, show your love with big hugs, authentic connections, and conversation to give them value. 

I believe we are living in a world that has forgotten how to love one another.

It’s like we are in a loop of life with no real caring contact, eye to eye, heart to heart.

Our devices have replaced relationships – We all say that, but we don’t set them down.

We speak about love and kindness with no actual execution.

I am so sorry if you are fighting this battle alone. Stay tight with the support groups. Find community somewhere, a strong church family is the best or a community group of some kind.

For you younger OTer’s who work a job – in all this…..you have my heart.

Take printout information to your management and co-workers, ask for understanding.

You are not alone.

by Lauren Daigle’s – Hold on to Me

Please feel free to share this blog and also encourage your friends, loved ones, and your health care team to share.

To share this blog simply touch the FB share button at the bottom. Or hold down on the icon button below and chose to copy.

Blog 7

To move from blog to blog in this series you will find towards the bottom of each blog, just above the calendar, you can navigate from blog to blog.

Kim of: http://happytrails2u.blog

Blog Series for Orthostatic Tremor Awareness

Blog 1) 

Blog 2) 

Blog 3) 

Blog 4)

Blog 5) 

Blog 6)

Blog 7)

Blog 8)

Blog 9)

Please feel free to reply, your replies are valued and appreciated.

Be kind and helpful in your replies.

AWARENESS of Orthostatic Tremor is the goal.

Attention for research purposes is the BONUS.

Use the share button.

2019 Great Lakes/Niagara Falls and The Smokies Tour Days – Days 20,21,&22

Happy Father’s Day to my Buddy/Love – ❤️

Your the BEST, Thank you for sharing the journeys, Always and forever – I Love you ❤️

Day 20 – Friday, June 14th

Resting up day before the 2 day journey home.

Day 21 – Saturday, June 15th (482mi)

Murphy, NC to Paragould, Arkansas

The most miles yet – eating up the miles, headed home.

The final miles, while excited for heading home I always want to enjoy every final mile of the journey.

We are Lodged and resting up for an easy riding day tomorrow – our final day.

Windy riding today, slanted riding always wears me out.

This is a list of the states we have passed through on this cross country tour:

Beginning in Arkansas

Missouri

Iowa

Minnesota

Wisconsin

Michigan

Ontario

New York

Pennsylvania

Ohio

Kentucky

Indiana

North Carolina

Georgia

Tennessee

back into Missouri and now Arkansas

Over 4000 miles.

😊anxious for home

Tomorrow……

Day 22 – Sunday, June 16th (250mi)

Paragould, Arkansas to Home

Thankful for the memories and my buddy/love traveling buddy ❤️

Thankful for all those who love us and faithfully pray us home safe.

Love you all,

Happy Blessed Trails to you

Day 19 – Tonight Altus OK and tomorrow HOME !

 

Tuesday, 5/24/2016

Started the day off right; doughnuts, the breakfast of happiness.

We are in the city of Altus, OK
for the night. We have traveled today around 375 in miles, arriving here at around 5:30pm.

We crossed into Texas on some two lane back road and crossed our way through the pan handle on into OK.

Tomorrow HOME!

The long flat, boring, straight back roads are very unpopulated and gives way to much thinking, much meditating and prayer too.

We wrestled with some cross winds. We neither one even mentioned it. We laughed as we agreed; after the monstrosity of the winds (25-35 mph with 50 mph gusts) we battled a few days ago, upon leaving Hoover Dam all the way to Flagstaff Arizona, it will be a long time before a few crosswinds shakes our boats.

Of course I have no high points of interest to share from today’s journey’s. Barren land, lots of fields, farm equipment; although there is a particular farm contraption that I find fascinating. I’ll google up a picture of it.

I tell Al – I think we could drive right under one of these.  🙂

 

The giant wind mills.

 

image
LOVE this – old frontier/new frontier

I really worked at getting this particular picture on the way by – the small ole wind mill was spinning diligently serving its purpose while the bigger ones on either side it, they were facing the wrong direction and not spinning at all. Many of the big ones were facing the right direction and spinning strong.

***********

5 Jesus answered, “Truly, truly, I say to you, unless one is born of water and the Spirit, he cannot enter the kingdom of God.
6 That which is born of the flesh is flesh, and that which is born of the Spirit is spirit.
7 Do not marvel that I said to you, ‘You must be born again.’
8 The wind blows where it wishes, and you hear its sound, but you do not know where it comes from or where it goes. So it is with everyone who is born of the Spirit.”
John 3:5-8

Nicodemus; he ask all the right questions for all the world of people that came after him needing the same questions answered.

Freedom from sin – Freedom to spin with our purposes in Christ.

***************

I do follow a very fascinating fellow. And we are well over 5000 miles together on this trip.

image

Yeah – still not stopping at the state signs. They don’t have them on the 2 lanes we cruise on. Some of them have been on bridges and some just too risky. So …..I fabricate my own now.   🙂

Oh WOW – it will be a full 8 hours of riding tomorrow.

ALWAYS bittersweet that last day of riding.

Sweet as in – Home Sweet Home

Bitter – The journey comes to an END.

Day 18 – Roswell

 

Monday, 5/23/2016

We missed our state entrance pictures from both Arizona and New Mexico. So…hey, I just googled me up a couple.

All day today when we drove past unique interesting stuff. I just thought hey – I’ll just google it and thief the pictures. At this stage in the trip, both Al and I are not stopping on any of the pull outs and tour stops, we are in high gear and logging up miles; homeward bound.

We have been through some of the New Mexico mountain ranges today – knowing we are leaving the last of our favored mountain riding behind, we are all too familiar with the mountains that begin to move out to the distance all around us as we drop in elevations we feel the temperature changes and then all the mountains are in our rear view mirrors. And there they go.

We are in Roswell, NM for the evening.

Things that made us go – hhmmm, today

We passed by some fields with these huge strange satellites all over.

image

And here is the interesting story ;

http://www.roadsideamerica.com/story/14701

And then strange black broken lava looking rock formations that went on for a few miles.

imageimageimage

 

And here is the interesting story ;

http://southernnewmexico.com/Articles/Southeast/Lincoln/ValleyofFires.html

When the road goes mile after mile after mile, you see the end and you know when you get to the end; you will see the whole thing all over again. Over and over and over. FLAT LANDS……………………..

image

Traveling off the main paths; staying away from the interstates leads to open range and really out of the way cowboy fuel ups, it becomes just really interesting. This below was our lunch and fuel up around 2pm today.

image
Nice hardy hamburgers served up here.

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Ladies bathroom decor

HAPPY TRAILS heading homeward.

Day 17

Day 17

We packed up at our ‘Primative’ camp site, loaded and strapped it all down to our bikes. My Hubby does most all of that stuff. I organize and reorganize and forget where I put stuff. Between the 2 of us we are fairly quick at setting up camp and taking it all apart too.

We found a Great breakfast place called the Coffee Pot in Sedona. Just stumbled in and realized everyone else did too. There were people standing around everywhere and a sign in sheet with a 20 minute wait, a shopping store with it. Not a Cracker Barrel but it was good.

After we had full tummies we fueled the bikes and then attended a church that Al found.

Cathedral Rock was next, one of the many Red Rock hiking mountains in the surrounding Sedona area. I say we…and well… I sit under a cool shade tree and relax. Today I seemed to be completely out of the path of all the many hikers.
Just sitting in peace. It’s a beautiful day, as was yesterday.
Al texted me when he was at one of the highest points, I tried to see him but he was to high. Then I went back to my perch and waited.

It was around 2pm when we headed out of town in the direction of the interstate, simply to get us to a two lane. We stopped at a McDonalds off the interstate to evaluate the two lane roads most scenic for our homeward journeys. Al is the navigator as we both assess the map over our Coke, sweet tea, hot fudge sundae and Al’s ice cream cone.

Sometimes when we walk out to our bikes there is someone looking at them and our Arkansas tags and waiting to ask about our journey. Usually it is a rider who relates. This time it was a friendly guy from Alabama. We always enjoy relating and bantering- motorcycle talk.

We passed through what is called the Mogollon Rim, another very beautiful range of mountains, bringing us within 50 miles of the New Mexico border, spending the night at a town called Show Low here in Arizona yet.

As a side note when riding motorcycles cross country, passing through high and low elevations we have an arsenal of riding jackets. A mesh jacket is light weight, I think of it as an air conditioned jacket. And then we have heavier jackets. I have one that is my warmest, a combo jacket, with a zip out jacket. I wear either of these two, alone or together, I can with stand temperatures into the upper 30s with both together.
As we pass through a day from morning to evening we shuffle jackets and outer wear along side the road many times. There is also rain gear.
And if I really need it, I have a heated jacket that electrically connects to power from my bike battery.
Two set of gloves – I wear a fingerless pair in heat, they protect my upper hands from burning. And then a warmer pair for cold protection.

We keep all this in our saddle bags handy to shuffle at any given temperature changes.

We even may charge our phone and helmet intercom on board our bikes.

Today is Monday morning. I did not have internet service last night, just could not connect to it.

So I am scripting this as we are getting ready to load up and head on into New Mexico.

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That is me not HIKING.

Al loves to hike and I enjoy relaxing peacefully in the shade. It’s ALL GOOD.

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This guy pulls up with his gas trailer as we are standing by our bikes deciding how much further down the road we want to go today. Using our hotel apps for best rates and such. He waves to us no problem he has plenty of room as he drives a few feet right by us and misses my bike by less then, I believe 10 inches and we just stood there and laughed at his great confidence and my despair.

Day 16 – Sedona Beauty

 

Saturday, 5/21/2016

We continued on from the Flag Staff, Arizona area to our next destination of Sedona. A place we love to visit; a beautiful winding mountain ride that leads into the very interesting red rock mountain terrain of the infamous Sedona land. I always get excited as we reach the bottom of this mountain to see Slide Rock.

Years ago when we came through here on a family road trip with our daughters, Lindsey and Laurie, we had our first experience on slide Rock.

Slide Rock State Park provides a very popular swimming experience along the Oak Creek Canyon where there is a long series of natural water sliding FUN. I will provide a picture, as it is really indescribable.

We have been on some interesting motorcycle rides in this area and Al also loves the hiking here. I hike until I find a comfortable place to just sit and relax while Al hikes on….and then comes back to retrieve me. I sit and have interesting conversations with passer by hikers or I read and just enjoy the views. There are MANY serious hikers in the Sedona Red Rock and Forrest surrounding areas, it is simply a very beautiful interesting terrain of land.

But….when we rode in yesterday the crowds were massive just as when we were at Big Sur just a few days ago. SCHOOLS OUT and the crowds are everywhere in the bigger tourist attraction areas. Our plan was to leave early enough in May to beat the crowds and not so early as to be in the yet cold climates. That is a narrow margin in time. And my sprained knee docked us a week. But it is what it is.

Cars lined the side of the road as we neared the Oak Creek water attraction of Slide Rock. As we drove by we could see the multitudes of people sliding away, all along the creek bed as the water rushes them all along. So much FUN.

Well, we drove on in and went to figure out a good camping area. Long story short; every camp ground was full. Al and I had never seen Sedona so full of people. It was a beautiful Saturday and every one came. We did walk around down town, ate a very late lunch, got the T-shirts and then headed to look for a campsite.

We finally were directed by a nice fellow at one of the campgrounds to an over flow, “primitive” tent camp area, where we set up camp.

We were set up by 5pm with both of us exhausted. We bedded down early in our coziness, complete with wiring off Al’s bike as we always hook up and recharge our devices (Phones, iPads and helmets). We even have service on this mountain we are camping on. So there we lay watching Netfix together on my iPad in the twilight of a very full moon, tucked into our huge cloud like queen size sleeping bag. The only disturbance were the strong gust of winds rushing through the trees and also blowing our rain flap. Winds must want their own season around here.

And that was the ending of day 16.

The pictures I am going to provide will be fabricated from Mr.Google.

 

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Behind me there, is called – Snoppy Rock (he is laying down)

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Primitive camp site

Day 15 – Bucket List Journey 2016

Winnie Pooh ain’t never seen a Blustery Day like we just Seen.

Friday, 5/20/2016

Today was by far our hardest riding day to date. We fought 25 to 35 mph winds with gust into 50 mph all day after leaving Hoover Dam. We wrestled with our bikes moving in waves back and forth on our lane all day. Early on, we both, just kept thinking we would ride out of it or away from it. It’s a fearful thing watching Al’s bike lean hard into the fierce winds over and over, pushing up against the strong winds. Bracing for unpredictable very strong gust. Passing semi’s and bracing along side them and also as you get around them, the burst that hits. UGH !

Once when we stopped to take a break at a real dumpy place where we stopped out of desperation and fatigue, Al was turning my bike around for me, I sat down to poor my Coke into my thermal mug, sand was flying all around us. I gave up to go inside to pour it. When I went to pull the door open, the wind was so severe, I could not pull it. A man walked up and opened it for me.

When I came back out, Al and I both expressed one to another the dread of getting back on our bikes and on the road again. But mile after mile we both just simple became more fierce warriors and determined to fight hard and push through. Seriously; a day we are both glad that it is over.

We are in a small motel about 12 miles from Flagstaff. Our length of travel today was only 260 miles, it felt like 500.

Those of you who are riders, are thinking – yes I have had days just like that.
Those who are not riders, are thinking – WHY ! 🙂

We will be entering into different terrain tomorrow. Really great riding. I simply LOVE to ride, always have and always will.
Can’t be explained.
For those who don’t know; I began riding at age 9, I was licensed at age 14.

Flat lands, prairie lands and desert lands are never my favorite. Curves, hills, mountains and twisties will always be my Favorite.

Hoover Dam has a story and it was a hard fought battle for taming the Colorado river and turning it into power and productivity for a wild dry thirsty land and all the people who had a future vision.

This is a brief explained summary – https://www.nps.gov/nr/TWHP/wwwlps/lessons/140HooverDam/140Hoover_Dam.htm

And this is a time lapsed Youtube video

That information is mainly for my following GRANDS, as they are following this blog. I LOVE you my GRANDS !!
I miss all my babies – all of you. 😉

 

Big bug splat – went BLAAM, Al said he heard it hit over the intercom. I rarely ride with my shield down. This is my 1st modular helmet and I only flip it forward in rain, wind or cold. Fortunately I had my shield down and my modular flipped forward also today. Ironically, also I have a Great wind shield on my bike and yet that bug found me. I have NEVER had such a big bug go right into my vision. YUCK !   Pledge – bug remover too.

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This was the highlight of our day. YUMMY for our TUMMY’s

Day 14

 

Thursday, 5/19/2016

TEMPERATURES – HOT
Desert terrain – UGH

At the beginning of everyday I am Ms Optimism. And then I dwindle as the day goes on.

Yesterday at the end of the day, I went into what I call, Jonah syndrome – ‘I am dying’ – ‘I just know I am dying’

I survived and a nights sleep always revives me.

Today :

Really I weathered it well – we rolled into Las Vegas around 3pm, so a short day helps.

Al’s smart bike has a temperature read out on board.

Me – what’s the temperature
Al – you don’t want to know.

(He does not want to tell me.)

Me – what is it, I want to know.
This was are intercom speak for about 4 hours, in temperatures ranging from 88 to 98. I know it could be worse.

Snow/hail, sleet, mountain top passes last about 45 minutes. You get through it and have a happy dance.

Heat and hot dessert winds all day …….. UGH just UGH.

We take extra long fuel ups. A large Coke and my favorite chocolate zingers push me
through. Al always gets a monster energy drink.

We had DQ for lunch as it was at one of our fuel ups. The smallest hamburger was $6. Al and I each ate a hamburger and I got a chocolate dilly bar, Al got a small cone, his cone cost $3.49.
Gouging in the middle of the desert !!!

Price line.com pulled through for us once again. We are holed up for the night on the 10th floor of The Red Rock Hotel a few miles away from the heart of Las Vegas.

Valet parking kinda frowns on motorcycles. But we worked it out when the head valet shouted from one of the cars – follow me.

We are in a huge beautiful room
With a full on marble bathroom.
A bath tub with a television above it. Inside where the toilet is located there is a
telephone ??   🙂    Seriously !

We walked through this very Luxurious Hotel lobby sweaty and desert grimy with our helmets, wondering where the guy rolled off with our 3 tons of bags and gear. They said it would show up in our room. When we got off the elevator on the 10th floor, magically a Bell guy rolls off another elevator with all of it. Big black gentlemen who is a rider and named off two different bikes he owns both Harley’s. One was a V-Rod, that’s the ONLY Harley I like. (muscle engine)

We both showered and cleaned up nice. I tried to style my hair with the blow dryer and melted a clump of hair. When I tried brushing through it in the bathroom, Al looked on the floor and there lay a mess of my hair as if I had cut a chunk out.
I put a couple bobbie pins in it, hoping to look nice and GLAD to not have helmet hair. Put on my light weight mary-jane crocks, GLAD to not have motorcycle boots on.

Off we went to indulge in a bountiful, all you can eat buffet.

Al and I both observed; this Hotel is like a cruise ship with multiple restaurants, high class boutiques, bowling, a movie theater with many movies to choose, lots of gambling and a massive beautiful pool.

 

We ate and then walked around watching people. We thought about going to a movie and then decided to go to our room where we rented – ‘In the Heart of the Sea’, Moby Dick movie.

With a full glass wall of a window, we have our curtains fully opened where we can see all the lights of Las Vegas in full view tonight – and that is COOL.

Tomorrow we plan on going to Hoover Dam and then head in the direction of Sedona. That will offer good riding and a little cooler climate.