tag:blogger.com,1999:blog-6390441292756538494.comments2024-02-05T00:52:35.525-05:00 Living with Kennedy's DiseaseBrucehttp://www.blogger.com/profile/17127100017051232292noreply@blogger.comBlogger703125tag:blogger.com,1999:blog-6390441292756538494.post-42480604227562451952019-10-10T07:53:04.438-04:002019-10-10T07:53:04.438-04:00Very good and useful information. I also have wrin...Very good and useful information. I also have wrinkles on my face, and this article really helped me. Skin problems in girls are not just pimples but have wrinkles too. Don't think wrinkles can only come when we are old, not treating the skin properly can cause premature aging or wrinkles as well. I usually take care of my face skin using a mask of fruit and honey, this is great for us. Sinta Wiranatahttps://amstelzijdekliniek.nl/noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-41550194758592673082019-10-10T05:37:51.031-04:002019-10-10T05:37:51.031-04:00
Hi, I’m diagnosed with SBMA, I’m still walking, b...<br />Hi, I’m diagnosed with SBMA, I’m still walking, but my muscle weakness is growing. I really hope for the progress of clinical trials to treat this disease. Share information. I will be very grateful.Anonymoushttps://www.blogger.com/profile/18120981632403416105noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-54035757157951672572019-09-25T20:52:27.536-04:002019-09-25T20:52:27.536-04:00You have just described my symptoms exactly. I pic...You have just described my symptoms exactly. I picked up a mild chest infection a few weeks ago and since then have had the most awful sleep experiences. I experience 3 sep types of waking - cough (moderate to significant retching), wheezing (no breath at all), and the 'drowning' sensation you described above. I resist sleeping now and since beg of symptoms, have experienced a max stretch of 2 hrs sleep at one time. I've seen several medical specialists and most recent diagnosis is of inflamed larynx coupled with GERD/ post nasal drip. This condition is ruining my life and I am grateful for any suggestions as to how I can manage or better still, cure itCatWomanhttps://www.blogger.com/profile/17332508707606299578noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-60118399803263005862019-07-19T12:47:37.684-04:002019-07-19T12:47:37.684-04:00I think you've shared a best experience with u...I think you've shared a best experience with us which could be also helpful for others. Your physical therapist recommended you great a great exercise for DHS.Georgehttps://www.milpitasspine.com/mountain-view-chiropractor/noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-3308791524415235352019-07-09T17:20:59.105-04:002019-07-09T17:20:59.105-04:00Such great physical therapy info. Thanks for this ...Such great physical therapy info. Thanks for this post. Codyhttps://lakecitypt.comnoreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-48688938113038635842019-07-03T09:56:47.933-04:002019-07-03T09:56:47.933-04:00thanks for this post Bruce. I can sure relate .......thanks for this post Bruce. I can sure relate .......diagnosed unofficially Oct. 2018 with genetic testing confirmation Feb. 2019 - praying to reach the acceptance and hope stages soon. Anonymoushttps://www.blogger.com/profile/13878577690213522619noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-42889459323869507172019-06-25T03:30:47.388-04:002019-06-25T03:30:47.388-04:00Thanks for sharing great information about the sym...Thanks for sharing great information about the symptoms of fatty liver or liver fat. Some people ask What are symptoms of fatty liver? Fatty liver occurs when too much fat builds up in liver cells. Although it is normal to have a tiny amount of fat in these cells.Roy-Johnhttps://www.blogger.com/profile/17814650770663171145noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-79874495353674204822019-04-17T20:52:46.417-04:002019-04-17T20:52:46.417-04:00My breath shuts down in the day many times when i ...My breath shuts down in the day many times when i turn my head or bend headAnonymoushttps://www.blogger.com/profile/06064070908779365081noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-70059776701211470342019-04-15T21:49:34.314-04:002019-04-15T21:49:34.314-04:00I have the same experience with it starting in a d...I have the same experience with it starting in a dream where I cant breathe and then wake up choking. My question is do you actually start coughing up anything liquid? Because I do and it takes a while to clear out my lungs properly. Unsure of what it is I inhaled though. Doc always suspects it is stomach acid but it could be saliva or God knows what. Im so terrified to sleep and nothing seems to help, not elevation or cutting off intake after 8 or anything. Really need a solution.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-12012096916611125272019-03-16T05:00:00.506-04:002019-03-16T05:00:00.506-04:00Hi carlos ,Iam currently in a similar situation ,w...Hi carlos ,Iam currently in a similar situation ,what was the outcome ?,i need some help ,thank you and I apologize for the inconvenience ,hope everything went well.Marcoshttps://www.blogger.com/profile/07864660316187828398noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-78604768726088571082019-03-16T04:52:55.128-04:002019-03-16T04:52:55.128-04:00Hi Linda ,what was the outcome ,i need some help ,...Hi Linda ,what was the outcome ,i need some help ,thank you ans I apologize for the inconvenience ,hope evrything went well.Marcoshttps://www.blogger.com/profile/07864660316187828398noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-527397522431573852019-01-24T16:41:48.260-05:002019-01-24T16:41:48.260-05:00I have had a mucusy cough for about 3 weeks now, l...I have had a mucusy cough for about 3 weeks now, last week i woke up in the middle of the night urgently neesing to clear my throat and started to spasm. My partner was terrified. Obviously panicked so much the noise is horrible. I tried a few different things like a shower before bed and no eating for hours before sleep and it happened the next night and then the next. Iv had nooo sleep for days now and have got time off work. Went to the doctor yesterday he confirmed laryngospasm and gave me prednisone for the inflammation which treats asthma among other different things he also gave me gees linctus for the cough. I was using mucinex to get rid of the mucus faster and the doc said it makes it worse.. Obviously! It just brings up more mucus you cant clear fast enough. Anyway im going crazy i need sleep but constantly need to cough up mucus and am scared to sleep. Today i have thankfully realised how to not freak out and it goes away or doesnt esculate at all.. A straw!! Of ur about to spasm start breathing through a short straw and block ur nose! Working for me so far. I hope it goes away with this medication! Anonymoushttps://www.blogger.com/profile/03103446817364058535noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-51855901179470471052019-01-23T12:14:20.734-05:002019-01-23T12:14:20.734-05:00I received an email from a gentleman in Michigan o...I received an email from a gentleman in Michigan on his pool therapy routine and felt I should share it.<br /><br />Hello,<br />I am 69 and have Kennedy's Disease. I can walk slowly around my home with no assistance and use a cane when out and about. Use a wheel chair when I know I may be on my feet for a long time.<br /><br />I attend physical therapy at a local facility using their heated pool. One hour each session, two sessions a week. I do a variety of exercises using my legs and arms. My family doctor OK'd this treatment and Medicare pays for it up to a certain amount of money per year. The therapy obviously will not cure me but it does help to maintain and slightly improve my ability to get around. I feel somewhat weaker the day after therapy, better the next day and stronger the third day. Then another session. The water allow me to work my muscles without straining them. And your balance is much better in the water. Start slow and work up under the guidance of a trained therapist. I would highly recommend it. If you need more information, please let me know.Brucehttps://www.blogger.com/profile/17127100017051232292noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-70626799319865500742019-01-21T12:10:18.959-05:002019-01-21T12:10:18.959-05:00Hey i fully understand what you going through i ha...Hey i fully understand what you going through i havw had painful feet for the last 12 months with no sign of any help from a consultant how arr you getting on now Anonymoushttps://www.blogger.com/profile/18217600389645982273noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-73622990988572016302018-12-20T10:44:18.898-05:002018-12-20T10:44:18.898-05:00Yup. My parachute is packed by many people, but th...Yup. My parachute is packed by many people, but the reserve/backup is always packed by my wife.<br />Happy Holidays.Frank Ostermannhttps://www.ostermanns.denoreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-44593444205007239472018-11-20T09:02:13.114-05:002018-11-20T09:02:13.114-05:00Thank you for your inquiry. It is difficult to wat...Thank you for your inquiry. It is difficult to watch a loved one in pain and not be able to help.<br /><br />Your sons need to discuss potential treatments for KD with their neurologists. Leuprorelin has been studied for several years in Japan. There appears to be some benefit (slowing) of the progression, but the side effects need to be carefully considered before moving forward. Dutasteride is another option that appears to help some with KD. Again, there are side effects. Currently, there is no known cure for KD.<br /><br />Ref. cramping, there are treatments to reduce the severity of the cramping. Again, this topic needs to be discussed with the neurologist. <br /><br />Your sons are young and there is a possibility a treatment or cure will be discovered within their lifetime. Keep the faith.Brucehttps://www.blogger.com/profile/17127100017051232292noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-64074688440945277592018-11-20T07:51:53.072-05:002018-11-20T07:51:53.072-05:00Is there any progress updates on Leuplin SR. my so...Is there any progress updates on Leuplin SR. my son is 33 and has been diagnosed. He suffers horrible cramps. My 1st son is 41 he too is diagnosed. It is a nightmare to watch them suffer with cramps that seem to last all nightAnonymoushttps://www.blogger.com/profile/15166804920949015488noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-24816658753088917602018-11-12T06:43:20.185-05:002018-11-12T06:43:20.185-05:00Thanks for sharingThanks for sharingBloggerhttps://www.blogger.com/profile/04746082251837902937noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-26059467778536377522018-10-21T17:21:55.355-04:002018-10-21T17:21:55.355-04:00Dear people, after a visit to the top pulmonologis...Dear people, after a visit to the top pulmonologist, the diagnosis is GERD.<br /><br />Good luck Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-18227287209827843132018-10-16T17:22:25.650-04:002018-10-16T17:22:25.650-04:00Same here.. searching for any treatment. Greetin...Same here.. searching for any treatment. Greetings from CroatiaMarinnoreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-34400593877522486172018-10-02T19:21:46.810-04:002018-10-02T19:21:46.810-04:00Realize you are not alone. There is a Kennedy'...Realize you are not alone. There is a Kennedy's Disease Patient Group hosted on Facebook if you are so inclined.<br /><br />There are many frustrations with this disease. The group really helped me deal with them.<br /><br />Good luck, and welcome to the disease. <br /><br />Jay C. "Jazzy_J" Theriot<br /><br />I can be reached through my blog at https://journey.jayctheriot.com if you wish to talk.<br />Jay C. Theriothttps://www.blogger.com/profile/11709582163239681225noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-57605278782224588332018-10-02T05:05:52.623-04:002018-10-02T05:05:52.623-04:00I am pretty sad. I've been dealing with an unk...I am pretty sad. I've been dealing with an unknown nervous system issue for 7 years. I was always diagnosed with benign fasciculation syndrome.<br /><br />Earlier tonight I stumbled on Kennedy's disease. I am 100% certain I have Kennedy's disease. I have all the symptoms, the gynomastacia, testicular atrophy, low testosterone levels, high glucose and insulin, metobolic syndrome, and elevated liver enzymes now. My aunt has an unknown genetic disease that was falsly believed to be SMA3, but she doesn't have the financial means to get genetically tested. I'm 29 years old and just had a daughter. This is very sad and I will talk to the Dr on Friday. Is there any realistic hope that we find something in the very near future for this disease?<br /><br />I'm very sad right now and hope this progresses very slowly. I know I have to get the genetic test, but for the first time in 7 years I finally have clarity to everything I have been dealing with.Anonymoushttps://www.blogger.com/profile/12979450231793246077noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-23868108033148898892018-09-20T06:19:38.819-04:002018-09-20T06:19:38.819-04:00Jay, a good question. Being right happens so few t...Jay, a good question. Being right happens so few times these days, I look at this as a small victory for husbands across the globe. :-)Brucehttps://www.blogger.com/profile/17127100017051232292noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-27376342987957671642018-09-20T02:00:07.420-04:002018-09-20T02:00:07.420-04:00I have a few concerns:
1) Are you sure you want to...I have a few concerns:<br />1) Are you sure you want to prove your wife wrong?<br />2) A positive answer to #1 could disprove the article.<br /><br />Thanks for this finding. It's good to know I'm not loosing my intelligence level.Jay C. Theriothttps://www.blogger.com/profile/11709582163239681225noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-22242235405047416382018-09-13T16:49:45.683-04:002018-09-13T16:49:45.683-04:00It started with a very hard cough. Then the vcd or...It started with a very hard cough. Then the vcd or laryngospasm started to appear after i coughed. First one or twice a day... now after 2 weeks i am going through 6-8 attacks per day. The throat closes completely and everytime i wonder if i will survive. The best solution to reopen the throat is to sip cold water or room temperature water. This shocks the vocal box and rinse it from whatever irritated it, helping to reopen. This problem is starting to seriously affect my life. Feeling like you are gonna die 6 times a day is something impossible to explain. On top during a major crisis my heart reacted very badly and i ended up at the hospital with tachycardia at over 300... red code and so on... i can't sleep, i cant drive a car, i cant meet a client (i suffocated in front of a client last week... not the best way to manage a meeting).<br />I talked with some ENT and even if i have no other signs, GERD is the primary suspect. <br />Anyway my advice is, always have a small bottle of water with you. Dont drink too much... just small sips. This also because if it last long you contract so much your diaframma that as soon as u can breath again you will start to throw up the water u just sipped.Marknoreply@blogger.com