Checking out at IKEA while we were in San Antonio, me driving an electric buggy. (late June 2021)
Well I had not ridden since last December so…..
The legendary Dragon at deals gap near Robinsville, NC., has 318 curves in 11 miles.
We have slayed that dragon many times on our motorcycles, my buddy/love and me, I try to talk myself down from not scraping pegs on the curves and not tacking out my gears so tight –
I love riding……curves, for some odd reasoning it ignites an
aggressive fire in soul. I NEVER slay that dragon passively.
This year has certainly been our off year, with Al having rotator cuff surgery and needing lots of rehab and me trying to navigate something very rare and new to me, a neurological disorder called Orthostatic Tremors.
Though it’s been challenging, I always hold on to a faith-thinking,
It may have been God protecting us in this particular time – no riding for us both.
I have told Al – it’s been a great ride and he says – it’s not over yet ❤️
So many great memories. We laugh and groan with the aches and pains of riding fatigue.
As we have aged more and in respect to health issues our riding changed over the years with starting early in the mornings and discovering about how easy it is to ask for early check in with only around 300-400 miles a day.
In every cross country though there is at least one or two days of hard long riding, never over 750 miles though I think only once or twice.
I have declared no more temperatures below 50 degrees, though I have a heated jacket. 85 is too hot. So we have modified some as I have declined in endurance.
Many times we start out cold and then enter warm temperatures. I remember one time we were leaving the Red woods camp ground early in the cold, we were coated up in our warm gear, navigating our way to see that big tree that we could drive through; Chandelier Tree in the Humboldt Forrest of California, the traffic comes to a stop, with road work, we were rolling along and stopping where there was shade, kicking our bike stands down to shed another layer of our warm gear every time we stoped in the shade, traffic being patient with us as we prepare for warmer temperatures.
May 2020 we logged over 2000 miles to the Smokies and back, then in June around 5000 miles to Glacier park and back.
In this season of time I have no specific journey to tell about, just this little summary of memories.
There have been many prayers of protections from our loved ones and I do believe we have been protected. We have had no major break downs, accidents or mishaps, which I believe is miraculous and the power of prayer.
We did it. ❤️ and as my husband says – it ain’t over.
I believe IKEA has more than 318 curves and I showed them how a motorcyclist does it on one of their electric buggy’s. Rearranged their furniture a bit and Al was quick to catch a few mishaps from hitting the ground, over all we left the place in pretty fare condition, Al said I was a little over confident.
With the help of medication I have standing still time of about 10-15 minutes. In shopping situations when moving slow, it can set the Orthostatic Tremor off and then I feel unstable. So I have had to get past my embarrassment and pride, resolving to use the mobility chairs when they are available. Shopping carts provide support in most cases. I have a couple of tripod chairs that I can carry easily. I use a rolling stool in my kitchen.
Bracing or leaning on a counter or chair next to me while standing; any kind of support helps. All these things are a part of modifying to this new style of living. But I can….walk fast. ☺️ I have always been a fan of momentum.
I have been in contact with a lady in Australia who is in my global Orthostatic Tremor support group, she is a rider. She informed me what I already knew through the Mayo Clinic movement disorder lab, though I told them I have been shifting back and forth in showering for the past few years. Moving foot to foot can reset/pushback on the leg tremors. It works for a while in church worship with moving leg to leg.
She said it works on a motorcycle.
This lady rider has cross country ridden in many different countries and continues to ride, she is a bit younger then I – though I believe in this present stage, God has sent me many encouragements, sharing a bond with a women rider in Australia is one of the many.
I am presently preparing a blog series to bring awareness to Orthostatic Tremor patients and also those living with auto immunes and chronic illnesses, loved ones and friends for a deeper understanding. Also lessons learned in advocating and navigating insurance. I hope for researchers and physicians to lean in and listen.
I plan on sending the blog in particular that tells the details leading up to the actual standing leg tremors to all potential research medical facilities. Orthostatic Tremor is minimally researched because of it being very rare.
I have minimal writing skills. So any one finding errors, feel free to correct me. I am grammatically challenged.
Orthostatic Tremor Awareness
This is a battle worth fighting……
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 or hold down on the blog URL and chose copy, to copy the link below.
Blog 1) https://happytrails2u.blog/2021/08/20/orthostatic-tremor-awareness/
To move from blog to blog in this series you will find towards the bottom of each blog, just above the calender, you can navigate from blog to blog.
Kim of: http://happytrails2u.blog
Blog Series for Orthostatic Tremor Awareness
Blog 1) Introduction to Orthostatic Tremor for Awarenes
Blog 2) Orthostatic Tremor – The Esesentials of Advovcating –
Blog 3) My Orthostatic Tremor Story
Blog 4) Inform Your Health Care Team
Blog 5) Orthostatic Tremor Managing Mentally
6) Managing and navigating physically with Orthostatic Tremor
7) Helping your family members and loved ones understand Orthostatic Tremor.
8) I collected all research and resources on Orthostatic Tremor along the way.
9) Orthostatic Tremor Encouragements and strength in Faith.
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.