Huntington's Disease: Horrible illness that needs to stop YESTERDAY

[NYSkiBlog]

Huntington’s Disease Society of America Awards More Than $2 Million To Expand HDSA Centers of Excellence Network to Sixty-Seven Sites Across the US - Huntington's Disease Society of America

HUNTINGTON’S DISEASE SOCIETY OF AMERICA AWARDS MORE THAN $2 MILLION TO EXPAND HDSA CENTERS OF EXCELLENCE NETWORK TO SIXTY-SEVEN SITES New York, NY (February 13, 2023) – The Huntington’s Disease Society of America (HDSA) is expanding its HDSA Centers of Excellence network of comprehensive care...

hdsa.org

 

[NYSkiBlog]

 

[NYSkiBlog]

Katrina Hamel in Uncut in this episode of Help 4 HD Live - here is one highlight, but please listen to the entire show here:

https://www.blogtalkradio.com/help4hd/2023/03/23/hd-uncut-with-katrina-hamel

Being vulnerable is hard, but this community understands! To share your story, reach out to us (lauren@Help4HD.org)

#SiblingCaregiver #ChildCaregiver #ChildhoodTrauma #Forgiveness #Thankfulness #HD #HuntingtonsDisease #Help4HD #Help4HDLive #TogetherWeAreStronger #Help4HD #Podcast

 

[Harvey]

From Scotty, he wants us to know. Sounds like some tough decisions.

"Family is taking me to see nursing home for HD patients in few days. The nursing home that has Huntington's patients that my family wants me to go to I will look at it in few days Not sure how long I make it there it's far from and once I go in the apartment program for RSS which works well for me will never let me back in."

We are thrilled to announce that the Advanced Memory Care at ArchCare at Ferncliff, Hudson Valley’s only specialized care center for people with neurodegenerative disorders, such as Huntington’s disease and ALS, has received a Silver Level Montessori Certification. ArchCare at Ferncliff is the first nursing home in the state of NY to achieve this designation, further highlighting our mission and commitment to caring for the elderly. Our announcement was featured by Columbia-Greene Media in the Hudson Valley 360, The Register Star and The Daily Mail. #TogetherWeCan #ArchCare #Seniors

https://www.hudsonvalley360.com/artsandlife/localannouncements/center-for-advanced-memory-care-at-archcare-at-ferncliff-achieves-silver-level-certification-as-a/article_329a894b-108f-5873-8efb-1818205ece8b.html

 

[Peter Minde]

A good friend died from ALS. My stepmother has Parkinson's. These are all $hitty diseases.

Thinking of you, Scotty.

 

[Warp daddy]

Sad indeed Peter this past week two ski buddies buried their Adult sons .

One 55 ,the other 58. One had ALS the other a very aggressive form of cancer diagnosed 7 weeks ago

The two dad's both in late 80's never expected to outlive their children.

 

[Peter Minde]

Sad indeed Peter this past week two ski buddies buried their Adult sons .

One 55 ,the other 58. One had ALS the other a very aggressive form of cancer diagnosed 7 weeks ago

The two dad's both in late 80's never expected to outlive their children.

Colin was 71 when ALS took him. I'm the oldest of 3, the middle brother passed away 10 years ago. Really tore up my dad.

 

[tirolski]

Hey, Scotty! My local Wegmans sells Sabrett's sauerkraut. I think of you when I buy it. I hope that you are hanging in there.

There’s nice sauerkraut made in Cortland folks sell now in the farmers market in Ithaca.
Making sauerkraut goes way back. It’s good for ya too.

Fancy Sauerkraut

In 1902, Leland “Lee” Colton organized the Skaneateles Kraut Company to turn the cabbage from area farms into sauerkraut. In 1905, Charles P. Dewitt became the owner when Colton moved to Geneva, N.…

kihm6.wordpress.com

 

[Harvey]

Update from Scotty.

The stuff is in me it's not a brain fart, or a huntingdon disease side effect it started a long time ago I wish I was in heaven with dad and mom all the time not killed my self but what inside me is I know if they do the camera procedure. in my mouth and teeth they will see when I tomorrow your l never want to be like this is not any thing that does not belong in me it's foreign hair the. reason the dentist would see it now because I feel more in my teeth and lips if they with, experience dentist not from smile place saw me .

The Dr dentist from there did not look in mouth while I had. the cleaning from the assistant dentist maybe sue them smile place if I go to heaven soon I love you but this is my life I, been dealing of since it started I just want a camera too see it before my body gives up.

My room mate been keeping me up since I got here he blast the music and TV all night long and is not person at all then. today he tried too punch me in the chest and he was shaking to much so he missed the , state police came and took the report but I now on the 2 floor . The police took the report I in room 2028. Now on the 2 floor I be down here much nice and my own bathroom and much, nice down here then upstairs Going to sleep now soon since no other room mate here.

ETA:

Thanks I in my own room now away from the crazy person and different section of the nurse home so we are separated by different elevator.

 

[Harvey]

Not totally sure what Scotty is telling me, but I think things are better:

Great news if it works for me Nurse supervisor just said that The Dr ordered me prescription liquid to get rid of the hair inside me and they know it's not HD in my mind might need few bottles lol because how long this happening It not from chewing which I knew and passed that baroictom eating with the x ray machine few days ago.

All the best to you Scotty!