I’m raising $2,000 until 04/18/2022 for DBS surgery fund. lodging and surgery expenses.. Can you help? https://www.paypal.com/pools/c/8IcAQRZBnP
never give up
One month and counting
I’m raising $5,000 until 03/14/2022 for DBS (deep brain stimulation) surgery, lodging and expenses. Can you help? https://www.paypal.com/pools/c/8HiA8W26xM
April 4th I check in at the imaging department at OHSU. On the 5th I rest and finish any and all last minute life stuff. The next day on the 6th of April I have my official surgery. I stay in the hospital overnight, then assuming all goes well a few days later they insert my power pack, then 2-3 weeks later I get plugged in and tuned up. They’ve provided 3 days worth of housing free of charged which is a blessing indeed . Unfortunately the who process is two surgeries and a recommended 30 day healing and stabilization period. These donations will go directly to the lodging and direct care that OHSU and insurance doesn’t cover. Any and all donations are impactful and I can’t express my gratitude and thanks for all of you. Please share the link even if you can’t help monitarily . All things done with love and light will be successful. Always and with some luck, science and faith I’ll see you all on the other side of this. If not please remember to always be brave be bold and thrive in the life you have.
Lifting the veil.
There comes a time in every life where one faces the thought of mortality. It may be of their own, your parents or child. But that time will come and when it does it will be as heavy as it is. Each person has a personal perception of what they can carry, which of lifes burdens can be carried and which can not. Some things that have been on my mind as of late. The weight of being or not being. The weight of choice or not choosing. The realities that these choices or lack there of do effect,some that are personal and go unnoticed by everyone and some that are drastic and get judged by the world.
Lifting the veil:
There was a time when I stood behind you
blindly and watched the world from the safety
of your comfort.
then life came and took you away
showed me the truth in my life
and the lies of my past.
forced me to be a man amongst men
yet as but a boy i failed to see
what the world would be.
if i was you and you were me.
what choices would you make
just where would your heart be?
As a child the fever came for me.
it took my breath away gave me the madness
that dwells deep in my soul.
no child see deaths face so soon and closely after
just being kissed by angels without getting a little burned
it feels as though god has been trying
to take me back home for years.
*what kills you makes you dead
and the rest just makes you tired.
sorry to let the truth show.*
I write from a very unforgiving place a place of no color ,just baited breath. who will go next, who will, what will, why did and how come. these are words ive learned to master yet never understood the reasons why.
why do we self make such heartache of this life
these mortal choices meant to enrich this paradise planet of
human experience. Of love,laughter and everythinig inbetween.?
We become trapped behind this veil that steals time and changes
perspectives as the wolrd spins.
once i woke up from a dream i had.
i was healthy, i had a family that loved me, two cars and cats.
there was a job and friends, bbqs and swim lessons, first overnight gitters
and sleep-overs filled with fun.
there was gradutations and salutations
then the veil was lifted on us all.
the world was still spinniing so much time had gone by
where oh where did all of those years go dear god where AM I NOW…….
THEN I WAKE…. its cold in this house, ghosts live here with me .
ghost from my past, present and future meet here each day to cast
sufferage upon this mind….
ive only tasted bliss once…
it tasted sweet like the sunshine should just as loves embrace kisses the morning dew.
then all was gone….. the spell broken. time lost.
the veil had been pulled and eachday counted more than the next.
Eachday a gift of sorrow filled joy. Each Day a moment in time never to come back
oh if for once i could just rest my head and heart at the same time. then maybe all of this
nightmare of lifes trials will make sense in some strange and twisted way.
Perhaps some penence for
misdeeds in a life forgotten but debts unpaid?
so many question.So little time.
Speech, self perception, the ability to hear ones own tone. All of these are serious factors to PD. I find them personally to be rather problematic as a young man trying to stay active both physically and mentally/socially. It can be especially hard for caregivers to interpret their clients if they don’t establish and keep a very open line of communication. Asking as often as needed ” your tone sounds X but your expression says Y. ” and vice versa. Honestly it’s one of the most frustrating things ever to never really know if I’m coming across as I’m trying to. Sadly oftentimes I find out afterwards that I haven’t which makes for either an awkward conversation that usually ends up making me feel insecure about my ability to communicate and perceive situations. Or in social situations blank stares and awkwardness. Blah………. That was a mouthful, lol. Anyhow Parkinson’s disease sucks so if you know someone with PD have patience because I can gaurentee no matter how frustrated you may be it’s 100 times more frustrating for the person with PD. Below is a cut and paste of the text from the link provided above.
As always thanks for your kindness and concern. Life with PD is a challenge every second of everyday but with the love,support and kindness of friends,family and friends unmet my life has been bearable and for that I’m forever thankful.
The donation button on my site is truly for paint and pills. It’s easy to have a great quality of life when you require very little. I spend over 25% of my total income on health care and the remainder on housing and food, the life of an artist and life on SSDI, it may not be the most glamorous life style but I’m free to spend my time almost anyway I choose symptoms permitting.
“A life in progress.”
Speech and Communication
By Angela Roberts-South, M.A., Ph.D. Candidate
The ability to communicate clearly is critical to maintaining existing relationships and to forging new ones. Parkinson’s disease (PD) can compromise this ability, and it is important for people with PD and their care partners to know that there are strategies available that can help to improve their communication abilities.
Communication Challenges in Parkinson’s
Each person’s experience with Parkinson’s is unique, and this holds true for communication. Symptoms vary and can change as the disease progresses.
Language and Memory. Some people with PD experience changes in cognition and language, which make it difficult to think quickly, to manage multiple tasks, to find words or to understand complex sentences. These changes, even if subtle, can make it challenging for a person with Parkinson’s to follow a conversation. For example, I often hear people with PD say, “I know the word I want to say, but I just can’t find it.” A related problem can be the time it takes to formulate ideas. Together, these problems can create pauses in the conversation and cause others to become unsure about when it is their turn to speak. In a fastmoving group discussion, others may not wait, and the person with PD can find him- or herself getting left out. It may help to make others aware of these challenges, and to check in with the person with PD to see if they have anything to add.
Emotions and Gestures. People with PD can have difficulty recognizing both words and facial expressions that convey emotions. At the same time, they may speak with a ‘flatter’ voice and make fewer expressive facial expressions, meaning that their faces communicate less meaning to their listeners. The same goes for physical gestures. Body language adds emphasis to a speaker’s words, but in PD the speaker often has a compromised ability to make gestures. Together, these symptoms can affect how listeners interpret intended emotions such as humor, irony or sarcasm.
Speech and Voice.
About 90 percent of people with PD will experience changes in their voices or their ability to make speech sounds at some stage of their lives. Most commonly, the voice becomes quieter. It can also develop a breathy or hoarse quality. These changes may make a person’s speech less precise and more difficult to understand, especially when speaking to partners who have hearing loss. Researchers believe that these symptoms are due to brain changes that make it difficult to follow internal cues, telling us how loud the voice should be or how much effort is required to produce clear speech. Then there is the matter of the speed at which people speak. Some individuals with PD may speak more slowly. Others — perhaps 10 percent — accelerate their speech so much that they stumble over sounds, and seem to be stuttering.
Walking and Talking. People with PD may find it difficult to communicate while walking or doing other tasks. Speech may become softer, and less clear when moving around. The problem may be exacerbated if the person also is trying to express complicated sentences. People may also experience more frequent and longer pauses in conversation. The reverse of this is also true. People with PD may change their walking pattern or have more challenges maintaining balance when they are trying to talk while walking.
Tips for Improving Communication
Certain strategies for improving communication work better for some people than for others, or may need to be adjusted at a different stage of Parkinson’s. The key to managing these problems is to remain flexible and to find a strategy that works for you. For all of these, the best results will come from working with a speech language pathologist (SLP).
Exercise the Voice. A well-studied technique for increasing vocal volume is the Lee Silverman Voice Treatment (LSVT®). It is an intensive voice exercise program that helps people with PD speak more loudly and clearly, and make facial expressions that are more emphatic. Therapy is conducted over the course of one month (four visits per week), under the direction of an SLP who is certified in the techniques. People with advanced PD, or with more severe cognitive changes, may face challenges in applying these techniques.
Speak Above the Crowd. For people who have difficulty making their voices louder, there are devices that optimize the natural tendency we all have to raise our voices above background noise. This natural tendency is called the Lombard effect. One device, called a SpeechVive®, is worn in the ear like a small hearing aid. When a person begins to speak too quietly, the device plays a background noise into the ear. The onset of this noise and the brain’s natural tendency (i.e., Lombard effect) results in the person with PD increasing their voice volume without having to think about doing so. Recently, a small study showed potential for a lasting benefit – the people who wore the device daily for eight weeks had a continued therapeutic effect even when not wearing it. An app for the iPhone called iParkinson’s works in a similar way although evidence on the therapeutic effect of this app is limited.
Pace Yourself. Reducing the rate of speech can be very challenging for individuals with PD. Concentrating on slowing down is typically not effective for more than a few words at a time. Sometimes, therapies that focus on voice and speech, such as LSVT, can help to reduce the rate. There are also devices that can record a person’s voice and play it back to them using an earpiece with a very subtle delay. This is called delayed auditory feedback. Another approach to slowing speech down is to use pacing therapy and/or pacing boards. Pacing board devices can be very simple, such as a series of cards with printed shapes or words on them that the person touches in sequence with every spoken word. This slows down the rate of speaking. There are smartphone and tablet apps that serve similar purposes.
Amplify with a Microphone. There are various amplifiers that may help, such as the personal amplifier, which requires the person with PD to wear a small microphone that picks up the voice, and a speaker that amplifies it. These devices range widely in size and in sound quality. They amplify the person’s voice to the same level for everyone. Some people may only need their voices amplified when they are talking on the telephone. There are telephones that amplify the voice to the person on the receiving end of the phone. Lastly, there are devices called wireless personal FM systems, borrowed from the hearing loss community, which can effectively amplify the voice with excellent sound quality. With this device, the person with PD wears a transmitter around the neck and a small microphone. Their conversation partner wears a receiver around the neck, equipped with an ear insert or tiny headphones. In situations where the person with PD needs to talk to more than one person at a time, each listener wears a receiver of their own and can set the amplification level that is comfortable for them. These devices are useful for conversations happening at longer distances (e.g., between rooms).
Think Outside the Voice. While rare in PD, there are times when a person’s speech becomes extremely unintelligible. In these cases, it might be best to use specialized devices that ‘speak’ for you. Devices range from low-tech alphabet boards to high-tech computerbased devices that become your ‘voice.’
Find an Approach That Works for You
Tis the season…
There was a time when being a painter was just a dream. The dream of a young man hoping to someday garner the attention of his father. A man whom the young boy so desprately wanted to impress and be worthy of his time…..That was a long time ago and that boy grew I showed and painted in my twenties, sold, laughed, danced and howled at the moon with the others artist of the day. Then came life….I lived a great life, I’ve had the luxury of travel and a good career. Ive known the love of a woman, how to be a good father and how to be. Ive learned from the struggle of losing everything to Parkinson’s Disease. Now tis the season of thanks again and i find myself in a new place, a new place of love and change.A place of things forgotten and not yet learned. Im in a place of thanks and appreciation for all the things i have in my life.
“Walking home ”
As always, I hope the world has been kind to you and you to it. For if not us then who?
Cheers and Happy Holidays, such a trip that Christmas is almost here again.
“A life in progress “