Please choose what you are struggling with now which noticing and recognizing small celebrations can help provide support...
Hello jeff. I'm sorry for your loss of your mother. I was a little away from the forum past week and didn't noticed it until now. You have my support and same goes for everybody here after reading their comments. Also, I'm glad to know many people around you are helping. That's really warming. About the surgery, I know there is a lot of time until then, but time will fly too fast, and hope it will go very well, and you can feel better than ever.
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Thank you so much for your well thought-out words. I appreciate your encouragement.
I do so hope it makes me feel well... and somewhat normal. I'll keep everyone updated.
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Bumping the reboot! I'm really sorry for that bad news!! I hope that the great news comes asap!
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I honor the way you're handling this Jeff and I pray that the outcome is as positive as you are!
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Thanks so much! There is a 1% chance I have a brain hemorrhage and die and that wouldn't bother me except for the fact that many times I have 1% or less chance of winning a GA on here and I win it!
Yikes!
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With your positive attitude and resilience I'm sure you'll have a positive outcome Jeff.
I had a 40% chance of not pulling through.
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I hope the surgery will be a success and bring you some real quality of life improvements Jeff.
And great to hear how the local school is coming together to help with yard; I'm glad there are still communities like that.
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I was going to mention a few celebrations but I've done it already in a thread I created.
I just want to say thank you. Thank you for being such a lovely man, to me and to everyone here. I can tell you have a great network around you in real life and you deserve all the love you get. I'm sorry to hear about your mother's passing, but just know that she is looking down and smiling at everything you do. Parkinson's Disease sounds awful and nobody should suffer through it, but I can tell you are very strong and will get through this. I really really hope the surgery goes well for you. Seriously I wish you all the luck and you'll be in my thoughts.
You are an inspiration to many and I aspire to be just as brave as you are. I'm sorry that it took me so long to comment. But bump with all the kitten love and we are all rooting here for you, Jeff! Peace and may good health come to you very soon <3
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THANk YOU so very much for your kind words! Love the feel better gif of kitties!
Interesting not about my Moms 3 cats: One of my Moms cats ran off in the woods and got lost.. One of the cats we found a good home with a good friend of my Moms.. and the third cat we took to animal shelter as she has bipolar condition and can go from sweet and affectionate to instantly attacking mode.
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I've seen a few procedures in documentaries that would be similar to what you'll be going through. Good luck with the surgery mate.
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I have sensory processing disorder. I'm sensory defensive, which means that all of my senses (vision, sound, tactile, taste, smell, motion, temperature, etc...) are constantly overwhelming.
Going shopping is out usually; the florescent lights, loud sounds, people, thousands of products, enormous space make it impossible to handle sometimes. Clothing can be painful to wear, no tags, certain materials are out. The taste of food in my mouth when done eating is bad so I have to brush all the time, but then the toothpaste taste is similar so I have to rinse for a few minutes. I'm so super sensitive to sound that I can hear microwave beeping from two apartments away (in a high quality building). It can sound as loud as fireworks. Light sensitivity makes it so I'm housebound and basically paralyzed all winter, which is about 6 months here, including the last month of fall and first month of spring.
Just a short list :P
This has all created anxiety (different from the mental disorder anxiety), OCD, chronic pain and more. I've been to therapy and tried many drugs for years which don't work since this is a physical disease, not a mental one. That is probably the hardest thing to get across to people. Family, Doctors and pretty much everyone else has told me my whole life that it's all in my head, and to just get over it, which has only made the problem worse. To this day they don't believe, even with mounting research and proof :/
As a bonus, I started having seizures out of the blue a couple years ago with no explanation. I had been over a year on medication without any seizures, but last week I had another one. I bit my lip and tongue somewhat badly.
I could write a book (I almost did, sorry) But thankfully someone already did:
Too Loud, Too Bright, Too Fast, Too Tight
Inside sample pages
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I'm sorry to hear of your mom's passing. I believe that death isn't the end though, so in a way death can actually be looked at as a positive thing since she's hopefully somewhere better than this life.
It's very inspiring to hear about your issues with Parkinson's and I wish you much luck with your surgery. Will you be able to go back to work when it's all done? Either way I hope the quality of life improves. I awestruck at how positive you can be about the whole thing!
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Wow-- never heard of this condition! It surely sounds like something horrific! My heart goes out to you-- thank you for sharing... If we get more conditions explained on this thread then I will make a chart in the OP listing the health condition and a link to the comments about it. In fact, that seems like a great idea. Let me think of how to implement.
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In a 'normal' person, the brain processes one sense at a time, and each sense has it's own part of the brain: auditory nerves only process sound, vision receptors only process vision, etc...
In SPD the brain processes all senses all at once, all the time. Pretty hard to tune anything out. The parts of the brain that are supposed to process specific senses actually process them all, meaning for example the Vision receptors are actually working on vision, sound, touch, etc...
The days range from suicidal (thankfully rare) to super great. It all depends on whether my triggers are being targeted or not. For instance in winter I completely shut down, but in summer I'm super energetic (more than most people) it can swing pretty extreme.
There are some positive things though! People with SPD tend to learn faster and more thoroughly than others because information is a type of sense in a way and it just won't stop! So information overload can be bad at times, but at others it's really exciting. I can memorize vast quantities of information on almost any subject and recall it at a moments notice. Family and friends are annoyed by my constant trivia xD -----Trivia comes from the Latin Tri-Via literally 3-way, meaning an intersection. People from all over the Empire would meet there and exchange information from the far corners
Language (Historical is my favorite) is where I have been blessed
I learned to read and write Japanese (katakana and hiragana + some Kanji) during the first day of class (one hour class) :D
I'm fluent in Mandarin Chinese (reading, writing, speaking).
For fun I studied Biblical Greek and Hebrew (Greek is pretty good, but Hebrew is just reading/writing. Need a dictionary :P)
I also learned to read and write Cyrillic (Russian, etc) and Old English/Norse Runes.
Any European language using the Latin alphabet (and variants) I can at the very least gather the basic meanings of many words/sentences.
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Another fun side affect is Synesthesia! I love it <3
Since none of the sensory organs specialize like they should, this results in information getting crossed.
Grapheme Color means that for me, every letter of the alphabet has a specific color. This even extends to any writing system. Hanzi/Kanji is interesting in that the 'radicals', the parts that make up the character each have a color, but the character as a whole has a totally different color.
Spacial Temporal Synethesia and spacial sequence result in numbers being arranged in space, meaning 1 is close to me and 200 is very far away; sometimes they're represented by height like on a thermometer. Calendars/days of the week are 3 dimensional representations in my mind arranged like dominoes.
And others
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Some small positives:
Got parts for a new computer build (it's been about 6 years).
Spring is here, and Summer is coming! I'll be free from the darkness for the whole time!!
My computer chair broke! This may not seem positive, but it wasn't a decent chair and I've found a gently used Steelcase Leap for ~$200 (retail $1,000-$1,500)
Since everyone has put up with my rambling, here are some giveaways!
Obulis
Alien Breed Trilogy
Etherlords 1&2
Garshasp: Monster Slayer
Garshasp: Temple Of The Dragon
Sacraboar
Eschalon Book 2
Bit Dungeon II (2 copies
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Bump and meow.
Caractacus | For family, past and present | [Bang Bang Bang](www.steamgifts.com/giveaway/UBPA6/) | 2Comment has been collapsed.
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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