CurePSP Virtual Walk, Hope as Big as Texas, and a new MA-67 Microphone.
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- Опубліковано 9 січ 2025
- I just wanted to get on and inform everyone about the upcoming virtual walk for the CurePSP Foundation.
www.psp.org/ev...
To take part in the walk can be done at home or wherever you are. Doesn't matter if you have the disease itself or not all are welcome.
WHEN: October 01, 2024 - October 31, 2024
WHERE:
CONTACT: events@curepsp.org
No matter where you live, feel free to join us for the Hope as Big as Texas: Virtual Walk! Get together with friends and family and walk anytime and anywhere throughout the month of October. Whether you are running, walking, cycling, strength training, moving in your wheelchair, etc. any type of movement counts. Come back to this page daily to log your movement for the day!
The purpose of the Hope as Big as Texas: Virtual Walk is to raise awareness for our Quality of Life Respite Care Grant. The respite care grant helps families needing in-home care for their loved ones.
About the CurePSP Quality of Life Respite Care Grant:
The fund grants 100 hours of in-home care services by a home care agency chosen by the awardee. Studies show that even a brief break or relief from caregiving responsibilities can improve the daily life of caregivers and their loved ones diagnosed with the disease. The importance of these services and the critical role of respite care are evident now more than ever. The critical nature of these services is clear, and CurePSP, with your support, is here to help! Our fight to find treatment and a cure is equally steadfast!
How to participate:
raceroster.com...
Equipment used:
Sony ZV E-10:
electronics.so...
Sigma 18-35mm Art Lens:
www.sigmaphoto...
Focusrite Scarlett Solo 4th Gen Audio Interface:
us.focusrite.c...
MA-67 Studio Condenser Microphone:
melonaudio.com...
Cable Matters 3.5mm TRS to Dual 6.35mm TS Breakout Cable 3 ft, 1/8 to 1/4 Stereo Cable, Y Splitter 3.5mm to 1/4 Cable, 1/4 to 1/8 Audio Cable:
www.amazon.com...
Parkinson’s and PSP are not the same and are 2 totally different diseases!!! Please stop spreading false information. There is no cure for PSP, there is no treatment for PSP. In the past 20 years since my Dad suffered and died from PSP there has not been much research or findings except for a “tau” component located in the frontal lobe. NOT PARKINSON’S,CBD. Please learn your facts first. Thank you for writing a song.
Progressive Supranuclear Palsy (PSP) and Multiple System Atrophy (MSA) are both neurodegenerative disorders often categorized as "atypical parkinsonisms," meaning they share many similar symptoms including slow movement, muscle stiffness, balance problems, frequent falls, and difficulty with speech and swallowing, making diagnosis challenging due to their overlapping features; however, key distinctions lie in the specific brain regions affected and the presence of autonomic dysfunction, which is more prominent in MSA.
Key Similarities:
Parkinsonian symptoms:
Both PSP and MSA can present with symptoms like slow movement, muscle rigidity, postural instability, and difficulty initiating movement, which are core features of Parkinson's disease.
Falls:
Frequent falls are a common symptom in both conditions due to balance issues.
Speech difficulties:
Both PSP and MSA can lead to changes in speech patterns like slurred speech and reduced volume.
Swallowing problems:
Difficulty swallowing (dysphagia) can occur in both diseases.
Cognitive impairment:
Some individuals with either PSP or MSA may experience cognitive decline, particularly in the later stages.
Poor response to dopamine therapy:
Unlike typical Parkinson's disease, both PSP and MSA often show limited response to medications that target dopamine.
I'd say that they are similiar.
Sorry for your loss of your father. I never said Parkinson's Disease was the same as PSP. I'm not sure where this came up, but I agree those 2 are not the same. May I ask where I made that statement?
May I suggest turning the captions on and read along with the video because at 3 minutes and 26 seconds I say ATYPICAL PARKINSONI'S not Parkinson's. Atypical parkinsonism, also known as Parkinson's Plus, is a rare group of neurological disorders that share some symptoms with Parkinson's disease but have additional symptoms and are more rapidly progressive. The most common atypical parkinsonism disorders are:
Dementia with Lewy Bodies (DLB): This condition can cause difficulty moving, thinking, sleeping, and focusing. People with DLB may also have hallucinations.
Progressive supranuclear palsy (PSP): This condition affects balance, walking, eye movements, and swallowing.
Multiple system atrophy (MSA): This condition affects movement and control of the body's involuntary (autonomic) processes.
I was honored to receive the State Flag that flew at the capitol building of the House of Represenatives and a certifcate stating such. It was a huge honor. I am sorry you heard something different then what I spoke.
www.youtube.com/@KarenMckeeakacakelady i hope this clears this up. No hard feelings on my end.
@@FightingMSA I just saw this 2 months later. No hard feelings on my end either. I just mourn the loss of my Dad at such an early age. Before he lost his ability to speak he said "I guess my Golden Years are tarnished." He worked so hard to provide for his family. He was such a good man and a great Anesthesiologist. I just get defensive a bit too much because I did all of the research through going to seminars, we donated his brain to research. I had to go to Doctor appointments with him to explain what limited knowledge there was about the disease 20 years ago to the Doctor's themselves. If I had been younger when this happened, I would have gone to Medical School and gone into research to find out as much as possible about reasons this and other brain anomolies. I pray that you are doing well and thank you for what you do to share about these diseases. Awareness is key.
You are such an incredible man Austin 💜🦋
Nope just me...lol
@FightingMSA I know you and you are incredible! 💜🦋
👏👏👏💜
@@alicetarver4227 thank you for watching this and learning about Atypical Parkinsonisms
@ absolutely. I’ve spent the last several years researching different types of parkinsonism’s and MSA. That has given me a better understanding of what you go through and that’s just part of being a friend because it is only done that you can understand more what they are going through and offer support. My illness is more like ALS so I totally understand the struggle.💜🙏
I am so happy that you are doing this! Thank you so much! I'm sorry for your diagnosis. Thank you from my family. PSP hit us out of the blue. This was in 2000, when my Dad went to the Mayo Clinic in Arizona. The Neurologist said it's either PICKS Disease or PSP. Turns out it was PSP. The eye movement set it apart from PICKS. I hope you aredoing well. God Bless you on this journey. My Dad was very loved and is truly missed. Twenty years! Thank you again for your kindness and for raising awareness!!!
@KayMcKeecakelady I had to go on full hospice care, but that hasn't stopped me from spreading awareness. I get eye injections every 3 months! (7 shots). It hurts so much but allows me to keep my eyes open. I actually write music and have sung 3 songs that are now on Spotify, Apple Music, Amazon Music, deezer, and the radio now. Actually, I was just on the radio giving an interview about my disease and how I have tried to get more awareness of MSA out. I'll leave a link. If you want, you can subscribe to my channel...lol it's free.
@@KayMcKeecakelady ua-cam.com/video/UwNsJcjLe2g/v-deo.htmlsi=FV5guEqe2WeH7dDy
@@KayMcKeecakelady he'll always be in your heart. Never forget that!
I love your songs!!! You are so talented. I am so sorry that you have to fight this horrible disease. Please keep sending me updates and interviews etc. I am hoping to watch your documentary. Is there a link to it? My 20 year old son is an EMT in California. He's coming to visit me in Texas next week. He's hoping to become a Paramedic. Keep up the good work! Prayers for you as you fight this horrible disease. ❤God bless your wife. Caregiving is so difficult. I am taking care of my 87 year old Mom. She's as sharp as a tack, but suffers from lymphodema in both legs. It hurts her to stand and walk. I'm grateful to God for her being alive and on this side of Heaven for now.
@@KayMcKeecakelady here are both documentaries and their film trailers.
ua-cam.com/play/PLfe1bSNdKEr2bIQiBQG8nX6xOkjW8uZou.html&si=JV3r_dQsTU-Foj_G
@@KayMcKeecakelady my website I run is....
www.fightingmsa.com/
@KayMcKeecakelady here is a group of videos from interviews to me speaking during the MSA concert where I met Black Crows Steve Gorman. We became friends due to his brother passing from MSA. You'll notice at the end of Driven to Help there's a dedication. I also got permission to use a song of his in Driven to Help.
ua-cam.com/play/PLfe1bSNdKEr3Zn-2enPVmG6szLT7JsJdf.html&si=IfetPUA74DOfQaWf
What sets PSP apart from both of those other diseases is eye movement aka "palsy" part of Progressive Supranuclear Palsy. They lose the ability to look up or down and have limited Peripheral vision. They are also known to fall backwards instead of forward. There is no link to whether or not it is hereditary as Parkinson's is. We can agree to disagree, however, after caregiving and watching my Daddy die from PSP as well as a neighbor's Mother (It's rarer for women to have PSP) we should all be grateful for the time we have left with them and make them feel special and loved, not just thrown into a "Memory Care Facility." Thank you for what you are doing in raising awareness about these awful degenerative brain diseases. God bless all of the victims of these horrible diseases as well as the caregiver's who take care of them. I just wish there would be more research done on these diseases. December 15th will be 20 years since my Daddy died. We have not learned much more about PSP than we knew back in 2004.
You would be surprised when my wife and I go to talk to hospital speaking events (mostly Neuro) doctors just to raise the awareness on possible symptoms, test, and etc on Atypical Parkinsons. It's sad that pobably 50% have never seen actual cases. I still apologize for your loss. When I was diagnosed with MSA we were like OK? What it is? When we contacted the now Mission MSA to find information out what it was was when we were asked to have our lives filmed because I wanted to make MSA a household name. We've made some headway with the documentaries. Please check them out! Fighting MSA Austin Crawford's Story and Driven to Help.
ua-cam.com/video/UgPmO6a-ZdU/v-deo.htmlsi=ViM9HF3ql3pFCVlq
ua-cam.com/video/oF4NhbcyZRo/v-deo.htmlsi=o8fjueJCSSQJJBhb