My Dad has a deep brain stimulator for his Parkinson's Disease.
It helps regulate the tremors he gets. The battery popped an alert that it needed to be swapped a few weeks ago, and yesterday it failed entirely.
My understanding is that the sheer backlog of people needing care, mixed with the inefficiencies of the VA system have slowed things down to a crawl.
Currently he's not due for a consult until May 16th. Not a battery swap... A consult.
Meanwhile his tremors are out of control.
@NiveusLepus
Oh Becca. This makes me so sad. I have spent my entire life caring for people. The system is so messed up. Prayers for your dad to get the help he needs expeditiously.
@CinnamonGirlE There are many blessing amidst this storm. His doctors are calling to check up on him, they're trying to adjust his meds. Not the receptionists, or the PA's, the doctors are stealing time from their busy day just to help him deal with this struggle.
This storm is inevitable, it would do no good to curse the rain, it will not stop it from falling. But those points of light amidst it all.
@CinnamonGirlE The kindness of people in our network, including you. It makes it more than bearable, but overcomeable. (I made a word!)
@NiveusLepus
It hurts so much when those we love are in need and we are helpless to do the things they need. The beauty in this world shines when people go out of their way for us. There is good in the world. We have to look for it, be it. And love one another. Glad to hear you are experiencing that even during this upsetting time.
@CinnamonGirlE When Mr Rogers was asked about 9/11 he shared a story about his Mother.
This is a paraphrase of that.
He said when I was young, and I'd see something upsetting or difficult on the news or in the world, my Mother would say, look for the helpers. No matter what happens, there are always people running to set things right.
@NiveusLepus
Grateful for those people. ❤️
@CinnamonGirlE
That has stuck with me. Illness, old age, suffering, and death are inevitabilities.
In the face of such things, it seems all the better to focus on the hope and light that are always there in spite of them.
My father will not always be with me as I know him now, but until he is taken I can make the most of each moment, and help him along his way. The same is true for all in our lives.
@NiveusLepus
So correct. We can't change the inevitabilities in this life. But we can lean on each other, lift each other up. This is the way.
@CinnamonGirlE I was listening to my audio book about the life of the Buddha this morning and I heard the tale of the 4 mountains.
Suppose, great king, that you heard of 4 great mountains crushing everything before them making their way towards your kingdom, from each direction, and nothing could stop them. What would you do?
"What would there be to do but to live my remaining hours as peaceful and serene as possible, following the teaching. What else would there be to do?"
@NiveusLepus
Sounds like a good book.
We really have one choice in this world. How to live. How to be with others. How to accept the inevitable.
@CinnamonGirlE That is very true. Which is why I am feeling so grateful for you and your words this morning. You are taking time to show compassion over distance, and it makes a difference.
This casual exchange, where I'm rambling a bit, is helping me focus and process. The kindness you and others are showing me, is further proof that we are all together, and helping each other along.
The amazing thing about shadow and dark times is that it allows what is good to shine all the brighter.
@NiveusLepus
Big love to you this morning Becca. 🤍
@CinnamonGirlE You are a good and groovy soul, par excellence!
@CinnamonGirlE Those 4 mountains are suffering, old age, illness, and death.
No matter how long or healthy I am, or my parents, or anyone I care about are, eventually those mountains will come, but the choices I make towards love, empathy, compassion and acceptance will make all the difference when they do come.
I can overcome much suffering, by accepting and dwelling in the impermanence of all things. It also will help me, I think, to see clearly and make the most of every moment before.
@NiveusLepus
Thanks for pointing that out this morning. I struggle mightily with things being impermanent. I guess when I feel someway about something, I stupidly assume it will always be that way. Life teaches me though.
@CinnamonGirlE This has been ringing in my life the last few days.
@NiveusLepus
I like this.
@CinnamonGirlE I've found it to be a very good book in general. "We were made for these times"
@NiveusLepus :( This sucks, I'm so sorry sweet bunny.
@PaganMother You are a good and groovy soul and I am so grateful for your friendship and compassion.
@NiveusLepus ((💙)). Sending strength to you and your family as you all maneuver through the VA system.
@ACG2 There person I've been staying with these last 5 weeks is also wrestling with the VA trying to get care, which is why it has taken so long.
In my Dad's case, it's also the sheer backlog and the shortage of qualified doctors to treat that are compounding the issue. My mom has become quite deft over the last decade in navigating the system, now we just have to get an opening.
@NiveusLepus
I hate this for him, you, and everyone impacted by the greedy dysfunction that passes for health care.
@publickovacs I know you have your own experience with this as you bravely fight your cancer.
The stories you brought from your group the other day continue to ring with heavy resonance in my mind.
How are you progressing? How are you feeling as you continue to get your treatment?
@NiveusLepus
I am not in treatment atm. I clawed my way to remission, so now the task is to stay there. I will be getting surveillance oncology follow-ups every three months for two years. First one is on May 21.
@NiveusLepus
My currently most urgent struggle is my left eye in which I have glaucoma and for which the insurance company has denied the surgery I need. They only pay for bigger, more invasive procedures. My doc is appealing. Meanwhile my optic nerve continues to die.
@publickovacs These barriers to care are beyond frustrating. You have every right to the care you need, yesterday.
May we each find ways to be the caveat to such compounded and monetized suffering that is being caused by these companies and their policies.
@NiveusLepus is he at all responsive to medication that may quell tremors in the interim? P.S. My dad had Parkinson’s.
@CanisPundit The Carvidope and Levidope are barely touching it and he is on many meds. They also leave him quite sick.
That said they've increased his dosage and the hope is it will help at least a bit. Time will bare it out.
It's a terrible disease, and I'm sorry you had to go through it with your father.
I was understandably, fairly upset yesterday when I first got the news. However, I've been making an effort to "pull back to the center of the wheel" a bit.
I am concerned. That battery was supposed to last for 3 years minimum, 5 to 6 max, and it lasted for 2.5
His form of Parkinson's is highly aggressive and progressing with rapidity. The fact the DBS is so taxed to exhaust its power so readily is further proof of something we've known for a time.