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RE: A Heartbreaking Day (in Open Topic) by Dan B Lilly, thank you for your prayers, and our prayers go to you and your sister in return. She is tru...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: A Heartbreaking Day (in Open Topic) by Ben I am so sorry. Sending you both love and strength. Truly hoping things stabilize and start reversing...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic A Heartbreaking Day (in Open Topic) by Lilly Dear All - Thank you again for providing this forum. It is a gift that has been invaluable to me. As...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: Wondering about this (in Open Topic) by Dan B The link in the preceding post didn't work for me. This is the correct link. ...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: Wondering about this (in Open Topic) by Lilly Hi Todd and Allen and Ben...Is has been about 2 years and I have a lot to update. Firstly, I want to...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: Sign up for the 2020 Virtual KD Conference (in Open Topic) by Lilly Thanks for this message. I am happy to be able to join in this way.... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic Sign up for the 2020 Virtual KD Conference (in Open Topic) by Cam ...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: Preimplantation Genetic Diagnosis (PGD) (in Open Topic) by ToddAllen Henry, If you use facebook the "Kennedy's Disease Patient group" ...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: Preimplantation Genetic Diagnosis (PGD) (in Open Topic) by raxel19 Hiya Henry, Congrats on wanting to start a family as well as trying to mitigate the spread of the di...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: Preimplantation Genetic Diagnosis (PGD) (in Open Topic) by Henry123 Hi all. My fiancé (who is a carrier of KD) and I are planning to have a family and are looking into ...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: EMG for KD (in Open Topic) by ToddAllen Here's a new paper finding a serum myoglobin test may be a good way to diagnose between KD and ALS: ...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: EMG for KD (in Open Topic) by ToddAllen There are roughly a couple dozen named varieties of ALS. Some named for the cause such as a genetic...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: EMG for KD (in Open Topic) by pianokeys Thanks for the replies. Will the pattern be the same as ALS or different please?... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: EMG for KD (in Open Topic) by Dan B This article is rather technical but worth reading in answer to your question. ...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: EMG for KD (in Open Topic) by ToddAllen Yes, there are patterns to EMGs that are suggestive of KD. But the definitive test is the genetic t...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic EMG for KD (in Open Topic) by pianokeys Hello, If you have KD and a neurologist performs as EMG test is there a particular pattern or sign...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: Husband has pain in his heels (in Open Topic) by Marsia Kotte Ok, thank you.... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: Husband has pain in his heels (in Open Topic) by KDA Adminstrator ...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: Husband has pain in his heels (in Open Topic) by ToddAllen Hi Marsia, welcome to the KD forums. They have fairly low traffic lately so if you don't get the an...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic Husband has pain in his heels (in Open Topic) by Marsia Kotte Does anyone have pain in their heels? Do you have any remedies for it?... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: Coping (in Open Topic) by Cam Hi Nick, welcome. Life's still good. I'm 66, no wheelchair nor pneumonia so far. While everyone's...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: Coping (in Open Topic) by ToddAllen Hi Nick, welcome to the club! I second all of Dan's great suggestions. I'd add that KD has highly ...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: Coping (in Open Topic) by Dan B Forgot to mention that one of the best articles on the KD blog is the one entitled: The Natural His...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: Coping (in Open Topic) by Dan B Hello Nick and welcome to the forum. The general answer to your question is: Yes, things will be o...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic Coping (in Open Topic) by Nick0651 Hi everyone, I’m new here. My name is Nick, and I’m newly diagnosed with Kennedy’s. A little back...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: A few questions (in Open Topic) by ToddAllen Yes, ALS has been the most common misdiagnosis for those with KD. A couple dozen different causes h...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic A few questions (in Open Topic) by pianokeys Hello, I have read that some people with Kennedys disease sometimes get misdiagnosed with ALS. How c...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: I don't think I get it (in Open Topic) by pianokeys Will the EMG reading be different in Kennedys compared to ALS?... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: Arginine as potential disease-modifying drug (in Discussion of Papers) by ToddAllen Arginine is also present in food. Amino acids are the building blocks of proteins and higher protei...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers RE: Arginine as potential disease-modifying drug (in Discussion of Papers) by Dan B Ben, the study you linked is very interesting, but of course it references a mouse model of PolyQ di...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers Arginine as potential disease-modifying drug (in Discussion of Papers) by Ben ...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers RE: Pillow recommendations? (in Open Topic) by Bob Heitzman I use two - a firm thin traditional for sleeping on my back, and a "side sleeper." The side sleeper ...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic Pillow recommendations? (in Open Topic) by Cam I'm having difficulty supporting my neck comfortably at night; any recommendations on pillows that w...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic Question about CCRCs and Lifecare Communities (in Open Topic) by Dan B Has any had the experience of applying to a Continuing Care Retirement Community (CCRC) or Lifecare ...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: laryngospasm (dry Drowning) Choking (in Open Topic) by Bob Heitzman Probably not applicable to SBMA'ers. It might be useful for leg cramps which seems to be a phase of ...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: laryngospasm (dry Drowning) Choking (in Open Topic) by granny I joined this site just to pass on information regarding Laryngospasms....taking magnesium and potas...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: First use of CRISPR to edit genes in the human body (in Open Topic) by Ben This is exciting.... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic First use of CRISPR to edit genes in the human body (in Open Topic) by Dan B This is exciting: the news story reports the first use of CRISPR to edit genes while still inside th...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: Jaw locking (in Open Topic) by Lolo Thank you both, I will show these replies to him so he can see your ideas. Hopefully a different pil...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: Jaw locking (in Open Topic) by Bob Heitzman Some of us have had jaw problems that may have been related to sleep position. In my case, I was sle...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: Jaw locking (in Open Topic) by ToddAllen I have a problem where my jaw catches when opening. I had an MRI and it showed cartilage that had s...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic Jaw locking (in Open Topic) by Lolo My husband is having issues with what he is calling his jaw locking making is very difficult and pai...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: Developing an antisense therapy approach for Kennedy’s disease (in Open Topic) by ToddAllen Hi Jin, welcome to the forums. I consider the work on ASOs for KD potentially good news. There hav...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic Developing an antisense therapy approach for Kennedy’s disease (in Open Topic) by Jin I entered the Kennedy Disease Association's Facebook and I have one document that is posted on Febru...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: Researchers discover how cells clear misfolded proteins from tissues (in Discussion of Papers) by Dan B Cam, that paper is interesting and thanks for sharing it. But as ToddAllen pointed out, it's about ...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers RE: Researchers discover how cells clear misfolded proteins from tissues (in Discussion of Papers) by ToddAllen I doubt it. It is about the process of clearing misfolded proteins that are outside of cells by bri...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers Researchers discover how cells clear misfolded proteins from tissues (in Discussion of Papers) by Cam ...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers RE: facial muscle weakness (in Open Topic) by jahradental thank you for your responses..... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: facial muscle weakness (in Open Topic) by Bob Heitzman I had jaw pain and found if I made sure to support my jaw while sleeping on my side it prevented the...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: facial muscle weakness (in Open Topic) by ToddAllen I have weakness of the lips, tongue and jaw although it isn't too bad except when sick or deeply fat...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic	» Refine Search » New Search

RE: A Heartbreaking Day (in Open Topic) by Dan B
Lilly, thank you for your prayers, and our prayers go to you and your sister in return. She is tru......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: A Heartbreaking Day (in Open Topic) by Ben
I am so sorry. Sending you both love and strength. Truly hoping things stabilize and start reversing......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

A Heartbreaking Day (in Open Topic) by Lilly
Dear All - Thank you again for providing this forum. It is a gift that has been invaluable to me. As......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: Wondering about this (in Open Topic) by Dan B
The link in the preceding post didn't work for me. This is the correct link. ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: Wondering about this (in Open Topic) by Lilly
Hi Todd and Allen and Ben...Is has been about 2 years and I have a lot to update. Firstly, I want to......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: Sign up for the 2020 Virtual KD Conference (in Open Topic) by Lilly
Thanks for this message. I am happy to be able to join in this way....
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Sign up for the 2020 Virtual KD Conference (in Open Topic) by Cam
......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: Preimplantation Genetic Diagnosis (PGD) (in Open Topic) by ToddAllen
Henry, If you use facebook the "Kennedy's Disease Patient group" ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: Preimplantation Genetic Diagnosis (PGD) (in Open Topic) by raxel19
Hiya Henry, Congrats on wanting to start a family as well as trying to mitigate the spread of the di......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: Preimplantation Genetic Diagnosis (PGD) (in Open Topic) by Henry123
Hi all. My fiancé (who is a carrier of KD) and I are planning to have a family and are looking into ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: EMG for KD (in Open Topic) by ToddAllen
Here's a new paper finding a serum myoglobin test may be a good way to diagnose between KD and ALS: ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: EMG for KD (in Open Topic) by ToddAllen
There are roughly a couple dozen named varieties of ALS. Some named for the cause such as a genetic......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: EMG for KD (in Open Topic) by pianokeys
Thanks for the replies. Will the pattern be the same as ALS or different please?...
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: EMG for KD (in Open Topic) by Dan B
This article is rather technical but worth reading in answer to your question. ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: EMG for KD (in Open Topic) by ToddAllen
Yes, there are patterns to EMGs that are suggestive of KD. But the definitive test is the genetic t......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

EMG for KD (in Open Topic) by pianokeys
Hello, If you have KD and a neurologist performs as EMG test is there a particular pattern or sign......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: Husband has pain in his heels (in Open Topic) by Marsia Kotte
Ok, thank you....
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: Husband has pain in his heels (in Open Topic) by KDA Adminstrator
......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: Husband has pain in his heels (in Open Topic) by ToddAllen
Hi Marsia, welcome to the KD forums. They have fairly low traffic lately so if you don't get the an......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Husband has pain in his heels (in Open Topic) by Marsia Kotte
Does anyone have pain in their heels? Do you have any remedies for it?...
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: Coping (in Open Topic) by Cam
Hi Nick, welcome. Life's still good. I'm 66, no wheelchair nor pneumonia so far. While everyone's......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: Coping (in Open Topic) by ToddAllen
Hi Nick, welcome to the club! I second all of Dan's great suggestions. I'd add that KD has highly ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: Coping (in Open Topic) by Dan B
Forgot to mention that one of the best articles on the KD blog is the one entitled: The Natural His......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: Coping (in Open Topic) by Dan B
Hello Nick and welcome to the forum. The general answer to your question is: Yes, things will be o......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Coping (in Open Topic) by Nick0651
Hi everyone, I’m new here. My name is Nick, and I’m newly diagnosed with Kennedy’s. A little back......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: A few questions (in Open Topic) by ToddAllen
Yes, ALS has been the most common misdiagnosis for those with KD. A couple dozen different causes h......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

A few questions (in Open Topic) by pianokeys
Hello, I have read that some people with Kennedys disease sometimes get misdiagnosed with ALS. How c......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: I don't think I get it (in Open Topic) by pianokeys
Will the EMG reading be different in Kennedys compared to ALS?...
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: Arginine as potential disease-modifying drug (in Discussion of Papers) by ToddAllen
Arginine is also present in food. Amino acids are the building blocks of proteins and higher protei......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

RE: Arginine as potential disease-modifying drug (in Discussion of Papers) by Dan B
Ben, the study you linked is very interesting, but of course it references a mouse model of PolyQ di......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

Arginine as potential disease-modifying drug (in Discussion of Papers) by Ben
......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

RE: Pillow recommendations? (in Open Topic) by Bob Heitzman
I use two - a firm thin traditional for sleeping on my back, and a "side sleeper." The side sleeper ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Pillow recommendations? (in Open Topic) by Cam
I'm having difficulty supporting my neck comfortably at night; any recommendations on pillows that w......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Question about CCRCs and Lifecare Communities (in Open Topic) by Dan B
Has any had the experience of applying to a Continuing Care Retirement Community (CCRC) or Lifecare ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: laryngospasm (dry Drowning) Choking (in Open Topic) by Bob Heitzman
Probably not applicable to SBMA'ers. It might be useful for leg cramps which seems to be a phase of ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: laryngospasm (dry Drowning) Choking (in Open Topic) by granny
I joined this site just to pass on information regarding Laryngospasms....taking magnesium and potas......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: First use of CRISPR to edit genes in the human body (in Open Topic) by Ben
This is exciting....
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

First use of CRISPR to edit genes in the human body (in Open Topic) by Dan B
This is exciting: the news story reports the first use of CRISPR to edit genes while still inside th......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: Jaw locking (in Open Topic) by Lolo
Thank you both, I will show these replies to him so he can see your ideas. Hopefully a different pil......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: Jaw locking (in Open Topic) by Bob Heitzman
Some of us have had jaw problems that may have been related to sleep position. In my case, I was sle......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: Jaw locking (in Open Topic) by ToddAllen
I have a problem where my jaw catches when opening. I had an MRI and it showed cartilage that had s......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Jaw locking (in Open Topic) by Lolo
My husband is having issues with what he is calling his jaw locking making is very difficult and pai......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: Developing an antisense therapy approach for Kennedy’s disease (in Open Topic) by ToddAllen
Hi Jin, welcome to the forums. I consider the work on ASOs for KD potentially good news. There hav......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Developing an antisense therapy approach for Kennedy’s disease (in Open Topic) by Jin
I entered the Kennedy Disease Association's Facebook and I have one document that is posted on Febru......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: Researchers discover how cells clear misfolded proteins from tissues (in Discussion of Papers) by Dan B
Cam, that paper is interesting and thanks for sharing it. But as ToddAllen pointed out, it's about ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

RE: Researchers discover how cells clear misfolded proteins from tissues (in Discussion of Papers) by ToddAllen
I doubt it. It is about the process of clearing misfolded proteins that are outside of cells by bri......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

Researchers discover how cells clear misfolded proteins from tissues (in Discussion of Papers) by Cam
......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

RE: facial muscle weakness (in Open Topic) by jahradental
thank you for your responses.....
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: facial muscle weakness (in Open Topic) by Bob Heitzman
I had jaw pain and found if I made sure to support my jaw while sleeping on my side it prevented the......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: facial muscle weakness (in Open Topic) by ToddAllen
I have weakness of the lips, tongue and jaw although it isn't too bad except when sick or deeply fat......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

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