Please choose what you are struggling with now which noticing and recognizing small celebrations can help provide support...
Hey Jeff, your comment on that other thread reminded me of this one. I haven't been going through the forums a lot lately, other life stuff, but just wanted to wish you luck with your surgery and hope it ends well for you.
Diddles92 | New job close to home | A Boy and His Blob | Level 0
(P.S. This is a different GA to the one from the other thread and hopefully I didn't mess up the formatting for you...)
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Thank you for the updates Jeff and wishing you and your family the best! <3
Last week in a documentary on TV here they showed those electrodes and that controller that looked like a pacemaker.
They also implanted one electrode on each side of the brain and those electrodes were placed deep in the brain.
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Update on status of surgery:
Aug 15- Note: Closing this thread as real life is taking over... thank you all for your awesome support!
This event is where you might find me on SG...
August 14th appointment with each brain doctor and surgeon, MRI of brain, etc... a stressful day
-- the day was stressful but went well... met my surgeon who is a great guy!
Enough about me:
August 14th
My wife's mother (my mother in law) went thru surgery today to remove cancerous tumors... She just found out she had cancer 2 weeks ago... so this year has been rough as many of you remember I just lost my mother because of thyroid cancer... now my wife's mother has cancer...Today we received the news that the cancer had spread more than realized... we will know more details as lab tests come back from biopsies taken...
August 29th: Surgery on my brain to implant electrical diodes (one on each side of brain)
Sept 11: Surgery to implant mechanical controller in chest and wiring
?: Appointment to turn on electrical brain implants
?: Appointment to tweak the settings of mechanical controller
The "Small Celebrations" thread has grown into a beautiful common ground for our SG community to celebrate family, friendship, and that of sharing small joys in daily life that really end up being rather LARGE in importance.
However, there are things we all face which make celebrating and holding onto the positive joys in life rather difficult... such as the loss of a dear loved one in death, or chronic physical health issues. We must make an extra special effort during such times to "stop and take time to smell the roses." Especially at these times we need others to provide support and encouragement and that we likewise can give support and encouragement.
In Small Celebrations Thread V 1.0 the SG community came together for four months to provide love, care and support to me because of my Mother's struggle with cancer and her death on April 24, 2017. Thank you, everyone, for all the kind, warm words given to me during that time of need, the GA contributions, and the sharing of small celebrations within your own life also.
I felt that it was time to unveil V 2.0 of this thread and introduce another piece to the puzzle of how much I value small celebrations and why. Like the lyme awareness thread-- this thread can also become an awareness thread for a chronic condition I'm daily struggling with presently.
At age 40 I started having tremors in my right hand that steadily increased for a few months that also appeared in my right foot. After 10 months of doctor after doctor with several thinking it was just anxiety and all in my head-- it became clear that I was IN FACT struggling with something VERY real. I was diagnosed with Parkinson's Disease on April 1st, 2008... and it was far from being an April's fools joke from my doctor.
I was a sign language interpreter and Gold's Gym spin instructor (indoor bike). I lost control of my right arm, pain and rigidity took over the right side of my body and in just 2 years I was taken out of both jobs unable to function in either and qualified for permanent disability. Parkinson's affects people differently. For me it is painful, intense tremors (right side and now full body), loss of balance, difficulty walking, and very tight and rigid muscles. Another issue is with bradykinesia which is a quick appearance of slowness, inability to move or function in daily activities... I also have uncontrollable trembling and sweating during that time. Thus I stay at home and in bed suffering about 75-80% of my day time.
Because of the serious increase in symptoms, I am going through a series of tests to receive a brain surgery called DBS- Deep Brain Stimulation. This is a device implanted in the brain that sends electrical charges to a specific area 24/7 to reduce symptoms. A wire is also implanted under the skin, down the neck and into a pacemaker-like controller within the chest.
The surgery will be in 4 months from now and you have to be awake during it and off of all drugs. That makes it rather a daunting ordeal especially since it requires me to have been off all Parkinson's medications for over 24 hrs so they can see when they poke the right place and my symptoms subside. I don't see how this will be possible as my body without any medicine help is in a constant spasmodic writhing and painful rigid trembling. Of course, I will be very nervous during this first part of the procedure that will take a non-stop 10 hours.
I have now almost 10 years of experience with Parkinson's (In a few months I'll be 50.) I have 3 children, all boys ages 5, 8 and 10. Of course it is difficult to even do simple things but small celebrations are playing with them, and words of affection showered on them daily.
If any of you have similar neurological conditions and would like to share your story or ask questions-- I'm available here as is everyone else on SG within this thread. I've been through A LOT including many side effects of medications-- voices, hallucinations, paranoia, obsessive-compulsive disorder, grandiose thinking, etc... and I'm willing to be an open support to any as I've received SO MUCH caring support myself.
Some examples of small celebrations:
-My son made the A-honor roll.
-I hugged my wife today and told her I love her.
-My baby took his first step!
-I passed my driver's test!
-I played ball with my children today!
We all daily have small celebrations that we can celebrate if we stop and take time to notice them. These "small" things are actually rather big on retrospection.
I appreciate so much support from everyone in this thread. We all share in common the sufferings of disease, sickness, pain and death of our dear loved ones and thus can find comfort and strength from each other to endure this... We must cherish the moments daily with those we love because those "small" things end up being the BIGGEST thing of all.
FORMAT:
**Note: Info on hospice care from SG user genkicoll here
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