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RE: Just diagnosed (in Open Topic) by Dave Y Juan I was diagnosed at age 56 in 2009 and had experienced some symptoms similar to what you describ...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic Just diagnosed (in Open Topic) by Juan Hello everyone. I am 53 and have just been diagnosed with Kennedy's disease. I am a little lost and ...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: Generalized Pain/Just don't feel good most of the time. (in Open Topic) by Pierre Thanks Todd! And thank you to Dorsey, your question and Todds response have opened my eyes to thing...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: Generalized Pain/Just don't feel good most of the time. (in Open Topic) by ToddAllen Pierre, I felt similar in my 40s. I was trying to adapt to having an untreatable progressive diseas...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: Generalized Pain/Just don't feel good most of the time. (in Open Topic) by dorsey Can you describe your pain more or symptoms? I generally for the most feel well. I do have periods t...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic Generalized Pain/Just don't feel good most of the time. (in Open Topic) by Pierre I'm wondering, do most of you just feel bad most of the time? I have not felt "Good" in years. I w...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: Mestinon or pyridostigmine (in Medications and Therapies) by ToddAllen Dan, nice summary.... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies Mestinon or pyridostigmine (in Medications and Therapies) by Dan B There has been discussion on the Facebook group about pyridostigmine (brand name Mestinon) and I thi...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies RE: Esophageal Dilation (in Open Topic) by Pierre Thanks Todd, I will certainly post updates as I get them. I have an appointment with my doctor earl...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: Esophageal Dilation (in Open Topic) by ToddAllen Pierre, I've also had trouble with choking. Years ago it was much worse but rarely bothers me now. ...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic Esophageal Dilation (in Open Topic) by Pierre Has anyone had problems or experience with esophageal dilation? I have had to have my esophagus dil...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: Knee or hip replacements? (in Medications and Therapies) by ToddAllen Robert, excellent to hear you have bounced back from breaking both hips and now have a vigorous exer...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies RE: Knee or hip replacements? (in Medications and Therapies) by Robert Greer Hi Jon I've had Kennedy's for 20 years. I broke both hips last year in falls. One in June the other ...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies RE: Knee or hip replacements? (in Medications and Therapies) by Dan B Here's another thing to check out. At the 28:50 mark on this video, there is an interview with a pe...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies RE: Knee or hip replacements? (in Medications and Therapies) by ToddAllen Dan has good points, especially his suggestion to post your question on one or more of the KD facebo...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies RE: Knee or hip replacements? (in Medications and Therapies) by Dan B Hi Jon, I have not heard of anyone with KD having either replacement you mentioned. I encourage y...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies Knee or hip replacements? (in Medications and Therapies) by JonH Anyone out there with KD ever had a knee or hip replacement after having been diagnosed with KD? If ...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies EOSINOPHILIC Esophagitis (in Open Topic) by Pierre I happend to run across this condition looking for other information about my esophageal constrictio...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: Facial paresis (in Open Topic) by Ben I've experienced that in the cold before as well. My experience sounds like Mike's.... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: Facial paresis (in Open Topic) by Mike Murphy I do experience this from time to time but it only lasts for a 3-5 seconds each time. For me it's mo...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic Facial paresis (in Open Topic) by bluefo I have recently again increased problems with spasms in the face, facial paresis (Bells Palsy ???). ...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: Mask wearing Covid question (in Open Topic) by Kal Hi Cam Thanks for response I am not sure about anything but I have had difficulty breathing when I’...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: Mask wearing Covid question (in Open Topic) by Cam Covid interferes with breathing permanently. KD'ers are at risk population, which is why I qualifie...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: Mask wearing Covid question (in Open Topic) by ToddAllen Masks can interfere with breathing. Because of my weakness walking is challenging causing heavier b...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: Mask wearing Covid question (in Open Topic) by Bob Heitzman Maybe this Google search: face mask frame... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic Mask wearing Covid question (in Open Topic) by Kal Hi I have a question about masks for Covid, I have had difficulty breathing when wearing a mask. I ...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: facial muscle weakness (in Discussion of Papers) by bluefo ...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers RE: facial muscle weakness (in Discussion of Papers) by Cam Thanks for the information, bluefo. I use a bi-pap, as exhaling against the constant pressure of a ...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers RE: facial muscle weakness (in Discussion of Papers) by bluefo ...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers RE: facial muscle weakness (in Discussion of Papers) by Cam Thanks for the info, bluefo. Can you tell me about your pillow, and describe exercises? Sounds like...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers RE: facial muscle weakness (in Discussion of Papers) by bluefo I have the same problem with my eyelids. In addition it looks like that I have some water retention....... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers RE: facial muscle weakness (in Discussion of Papers) by Istvan I guess a plastic surgeon may be more experienced in resolving facial muscle weakness, than a dentis...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers RE: facial muscle weakness (in Discussion of Papers) by DavidF1940 I am interested in your post as reference to facial muscle weakness seemns rare on these forums. I h...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers RE: Statins (in Medications and Therapies) by bluefo Is there any new or updated information about the use of statins for KD patients?... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies RE: My legs are getting very week. Any advice please? (in Open Topic) by Istvan David, you are really lucky. Despite being more than twenty years younger, I am already in the prett...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: My legs are getting very week. Any advice please? (in Open Topic) by ToddAllen David, I should be asking you for advice as you are doing very well to still be walking and driving ...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic My legs are getting very week. Any advice please? (in Open Topic) by DavidF1940 Hi everyone. I am just approaching my 81st birthday. I am relatively lucky as my KD came on fairly l...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic Philips recall of certain BiLevel CPAP and BPAP machines (in Open Topic) by Ronald M. Philips has issued an urgent recall of certain BiLevel CPAP and BPAP machines manufactured before Ap...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic News about drug Zolgensma used to treat SMA (in Medications and Therapies) by Dan B The news media in the U.K. have reported that the first child there was treated with a new drug call...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies Surgery Concerns - Anesthetics (in Open Topic) by Ronald M. Hello, one of the most frequent questions the KDA board receives is on Surgery Concerns - Anesthetic...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: A new leuprorelin study has published (in Discussion of Papers) by ToddAllen I found this article which may explain my elevated sex hormones. ...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers RE: A new leuprorelin study has published (in Discussion of Papers) by ToddAllen I got blood work done last week. I was roughly 16 hours fasted at an 8 AM blood draw so it is a goo...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers RE: A new leuprorelin study has published (in Discussion of Papers) by ToddAllen Istvan, yes metformin is definitely interesting. Mouse studies showing improved lifespan on metform...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers RE: A new leuprorelin study has published (in Discussion of Papers) by Istvan Todd, thank you for the details -- I really appreciate your effort. Since there is a scarce of studi...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers RE: Are there any news about new clinical trials or treatments? (in Open Topic) by ToddAllen I look for new papers using Pubmed and Google Scholar. For papers behind paywalls I look for them o...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: Are there any news about new clinical trials or treatments? (in Open Topic) by Dan B Jin, apart from this forum, search at ...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic Are there any news about new clinical trials or treatments? (in Open Topic) by Jin Hello. Nowadays, I know that all interest is focused on Covid 19. Still, I think someone is doing re...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic RE: Two things I should have done earlier (in Medications and Therapies) by Ronald M. Thanks for sharing Bob. I feel that I am heading down this path myself and like you am getting frust...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies RE: Status of this study? (in Medications and Therapies) by Dan B I share your frustration. Testing drugs in humans is very expensive, and getting drugs through the ...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies RE: Neurologist Visits (in Medications and Therapies) by ToddAllen I think my experience is unusual in that I have a neurologist who has done beneficial things for me ...... Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies	» Refine Search » New Search

RE: Just diagnosed (in Open Topic) by Dave Y
Juan I was diagnosed at age 56 in 2009 and had experienced some symptoms similar to what you describ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Just diagnosed (in Open Topic) by Juan
Hello everyone. I am 53 and have just been diagnosed with Kennedy's disease. I am a little lost and ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: Generalized Pain/Just don't feel good most of the time. (in Open Topic) by Pierre
Thanks Todd! And thank you to Dorsey, your question and Todds response have opened my eyes to thing......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: Generalized Pain/Just don't feel good most of the time. (in Open Topic) by ToddAllen
Pierre, I felt similar in my 40s. I was trying to adapt to having an untreatable progressive diseas......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: Generalized Pain/Just don't feel good most of the time. (in Open Topic) by dorsey
Can you describe your pain more or symptoms? I generally for the most feel well. I do have periods t......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Generalized Pain/Just don't feel good most of the time. (in Open Topic) by Pierre
I'm wondering, do most of you just feel bad most of the time? I have not felt "Good" in years. I w......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: Mestinon or pyridostigmine (in Medications and Therapies) by ToddAllen
Dan, nice summary....
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies

Mestinon or pyridostigmine (in Medications and Therapies) by Dan B
There has been discussion on the Facebook group about pyridostigmine (brand name Mestinon) and I thi......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies

RE: Esophageal Dilation (in Open Topic) by Pierre
Thanks Todd, I will certainly post updates as I get them. I have an appointment with my doctor earl......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: Esophageal Dilation (in Open Topic) by ToddAllen
Pierre, I've also had trouble with choking. Years ago it was much worse but rarely bothers me now. ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Esophageal Dilation (in Open Topic) by Pierre
Has anyone had problems or experience with esophageal dilation? I have had to have my esophagus dil......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: Knee or hip replacements? (in Medications and Therapies) by ToddAllen
Robert, excellent to hear you have bounced back from breaking both hips and now have a vigorous exer......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies

RE: Knee or hip replacements? (in Medications and Therapies) by Robert Greer
Hi Jon I've had Kennedy's for 20 years. I broke both hips last year in falls. One in June the other ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies

RE: Knee or hip replacements? (in Medications and Therapies) by Dan B
Here's another thing to check out. At the 28:50 mark on this video, there is an interview with a pe......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies

RE: Knee or hip replacements? (in Medications and Therapies) by ToddAllen
Dan has good points, especially his suggestion to post your question on one or more of the KD facebo......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies

RE: Knee or hip replacements? (in Medications and Therapies) by Dan B
Hi Jon, I have not heard of anyone with KD having either replacement you mentioned. I encourage y......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies

Knee or hip replacements? (in Medications and Therapies) by JonH
Anyone out there with KD ever had a knee or hip replacement after having been diagnosed with KD? If ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies

EOSINOPHILIC Esophagitis (in Open Topic) by Pierre
I happend to run across this condition looking for other information about my esophageal constrictio......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: Facial paresis (in Open Topic) by Ben
I've experienced that in the cold before as well. My experience sounds like Mike's....
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: Facial paresis (in Open Topic) by Mike Murphy
I do experience this from time to time but it only lasts for a 3-5 seconds each time. For me it's mo......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Facial paresis (in Open Topic) by bluefo
I have recently again increased problems with spasms in the face, facial paresis (Bells Palsy ???). ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: Mask wearing Covid question (in Open Topic) by Kal
Hi Cam Thanks for response I am not sure about anything but I have had difficulty breathing when I’......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: Mask wearing Covid question (in Open Topic) by Cam
Covid interferes with breathing permanently. KD'ers are at risk population, which is why I qualifie......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: Mask wearing Covid question (in Open Topic) by ToddAllen
Masks can interfere with breathing. Because of my weakness walking is challenging causing heavier b......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: Mask wearing Covid question (in Open Topic) by Bob Heitzman
Maybe this Google search: face mask frame...
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Mask wearing Covid question (in Open Topic) by Kal
Hi I have a question about masks for Covid, I have had difficulty breathing when wearing a mask. I ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: facial muscle weakness (in Discussion of Papers) by bluefo
......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

RE: facial muscle weakness (in Discussion of Papers) by Cam
Thanks for the information, bluefo. I use a bi-pap, as exhaling against the constant pressure of a ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

RE: facial muscle weakness (in Discussion of Papers) by bluefo
......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

RE: facial muscle weakness (in Discussion of Papers) by Cam
Thanks for the info, bluefo. Can you tell me about your pillow, and describe exercises? Sounds like......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

RE: facial muscle weakness (in Discussion of Papers) by bluefo
I have the same problem with my eyelids. In addition it looks like that I have some water retention.......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

RE: facial muscle weakness (in Discussion of Papers) by Istvan
I guess a plastic surgeon may be more experienced in resolving facial muscle weakness, than a dentis......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

RE: facial muscle weakness (in Discussion of Papers) by DavidF1940
I am interested in your post as reference to facial muscle weakness seemns rare on these forums. I h......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

RE: Statins (in Medications and Therapies) by bluefo
Is there any new or updated information about the use of statins for KD patients?...
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies

RE: My legs are getting very week. Any advice please? (in Open Topic) by Istvan
David, you are really lucky. Despite being more than twenty years younger, I am already in the prett......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: My legs are getting very week. Any advice please? (in Open Topic) by ToddAllen
David, I should be asking you for advice as you are doing very well to still be walking and driving ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

My legs are getting very week. Any advice please? (in Open Topic) by DavidF1940
Hi everyone. I am just approaching my 81st birthday. I am relatively lucky as my KD came on fairly l......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Philips recall of certain BiLevel CPAP and BPAP machines (in Open Topic) by Ronald M.
Philips has issued an urgent recall of certain BiLevel CPAP and BPAP machines manufactured before Ap......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

News about drug Zolgensma used to treat SMA (in Medications and Therapies) by Dan B
The news media in the U.K. have reported that the first child there was treated with a new drug call......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies

Surgery Concerns - Anesthetics (in Open Topic) by Ronald M.
Hello, one of the most frequent questions the KDA board receives is on Surgery Concerns - Anesthetic......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: A new leuprorelin study has published (in Discussion of Papers) by ToddAllen
I found this article which may explain my elevated sex hormones. ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

RE: A new leuprorelin study has published (in Discussion of Papers) by ToddAllen
I got blood work done last week. I was roughly 16 hours fasted at an 8 AM blood draw so it is a goo......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

RE: A new leuprorelin study has published (in Discussion of Papers) by ToddAllen
Istvan, yes metformin is definitely interesting. Mouse studies showing improved lifespan on metform......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

RE: A new leuprorelin study has published (in Discussion of Papers) by Istvan
Todd, thank you for the details -- I really appreciate your effort. Since there is a scarce of studi......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

RE: Are there any news about new clinical trials or treatments? (in Open Topic) by ToddAllen
I look for new papers using Pubmed and Google Scholar. For papers behind paywalls I look for them o......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: Are there any news about new clinical trials or treatments? (in Open Topic) by Dan B
Jin, apart from this forum, search at ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Are there any news about new clinical trials or treatments? (in Open Topic) by Jin
Hello. Nowadays, I know that all interest is focused on Covid 19. Still, I think someone is doing re......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

RE: Two things I should have done earlier (in Medications and Therapies) by Ronald M.
Thanks for sharing Bob. I feel that I am heading down this path myself and like you am getting frust......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies

RE: Status of this study? (in Medications and Therapies) by Dan B
I share your frustration. Testing drugs in humans is very expensive, and getting drugs through the ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies

RE: Neurologist Visits (in Medications and Therapies) by ToddAllen
I think my experience is unusual in that I have a neurologist who has done beneficial things for me ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies

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