Guest guest Posted July 22, 2001 Report Share Posted July 22, 2001 HELLO AND WELCOME TO OUR FAMILY!! YOU HAVE FOUND THE MOST CARING, LOVING, INFORMATIVE FAMILY IN CYBER SPACE!! HAPPY TO HAVE YOU! JUMP IN WATER IS GREAT AND SO ARE WE!! LOL I AM BETSY 50 YRS OLD FORMERLY OF NEW YORK BUT LIVE IN FLORIDA FOR PAST 3 1/2 YRS AND LOVING IT YNF BETSY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2005 Report Share Posted August 6, 2005 Hi Edith, Welcome to the group! Sorry to hear about your Mum, however this disease can be managed with the right medications/treatment. Does your Mum have a nebuliser or puffers like ventolin and atrovent to help her breathing? If you Mum is too weak to walk and exercise, it is importantant that she does breathing exercises to keep her lungs strong and to avoid pneumonia. We are all individual with our bronchiectasis. If your Mum has a lot of mucus, she will need to do gentle postural drainage twice daily to keep her lungs clear. Perhaps you could organise (through your GP) for a community physio to call in to see your Mum to go through some breathing techniques and postural drainage (if required). Is your Mum being looked after by a lung specialist? My GP knows little about 'bronch' so I am monitored by my lung specialist. Let us know if there are any other questions, Edith. I wish your Mum all the best and hope she is feeling better soon. Love, Bunny (Sydney, Aust) -----Original Message-----From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of edith loudenSent: Sunday, 7 August 2005 8:11 AMTo: bronchiectasis Subject: New member Hi, My name is Edith and my Mom has be diagnoised with having bronchiectasis. I know nothing about this illness and I don't think our local docter does either. She can't stay by herself--she is 83. She is weak and can't do anything for herself. How do we help her? are there exercises that we can do with her to increase her strenght. I'm looking for any kind of info or help about this condition and what her chances are of getting any better. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2005 Report Share Posted September 9, 2005 Dorothy, welcome to the group. My grandmother was diagnosed at 81 yrs of age, she died at 93. She died not from bronch , but from anaesthetic probs after she fell and brome her hip. That was almost 40 yrs ago now. It was only that my dad and a cousin ( boy) had been diagnosed at round 21, that made them look further into my grans constant fight with pneumonias and acute bronchial probs. I really doubt if they would have even looked for bronch, had my dad who at that time was very unwell with Bells Palsy, and they decided to check the family out for things. Bells Palsy often happens apparantly in the same group of people with bronch. My dad, his late uncle, myself and a daughter all have Bells palsy. So it probably was with my gran for many years. My dads family came from Manchester England, and his mums side came from Cornwall. I am in Queensland Australia. Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2005 Report Share Posted September 9, 2005 Thank-you for the information, Sandy, and to everyone who contacted me. I was feeling very alone in this as my mother depends on me emotionally. I feel very encouraged by the story of your grandmother. When I think about it, I think that my mother has had this for some time because she has always had a bad cough. She had attributed this to the fact that my father smoked. They diagnosed her after 2 back-to-back bouts of pneumonia and some coughing up blood. Then they decided to do a catscan of her chest. I would like to know if there are ways for her to get that phlem up easier. That seems to be a real problem. Again, thank-you. I was very happy to find this wonderful group. I will look up all of the things that have been suggested.sandy taylor wrote: Dorothy, welcome to the group.My grandmother was diagnosed at 81 yrs of age, she died at 93.She died not from bronch , but from anaesthetic probs after she fell and brome her hip.That was almost 40 yrs ago now.It was only that my dad and a cousin ( boy) had been diagnosed at round 21, that made them look further into my grans constant fight with pneumonias and acute bronchial probs.I really doubt if they would have even looked for bronch, had my dad who at that time was very unwell with Bells Palsy, and they decided to check the family out for things.Bells Palsy often happens apparantly in the same group of people with bronch.My dad, his late uncle, myself and a daughter all have Bells palsy.So it probably was with my gran for many years.My dads family came from Manchester England, and his mums side came from Cornwall.I am in Queensland Australia.Sandy__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Hi Jan, thanks for the welcome. I don't know what MAC is but I'm sure its not pleasant if it requires more meds. I lived in Fla. for many yrs. so I can understand how bad the humidity must be in St louis. I hope you have some kind of air conditioning to get some relief from the heat . Sonny, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Hi Sonny, MAC is mycobacterium avium complex-- a form of non-contagious T.B. I'm guessing because of my weakened lungs with the bronch it latched on for a visit and never left. I don't mean to make light of it. There was an article in our St. Louis paper by a writer from the New York Times and I found out something very interesting. It hits more women than men and women who are post menopausal, thin and caucasion. I fit all three. I've been very thin my whole life. And, yes thank goodness for air conditioning. It makes a big difference. The treatment for MAC is 18 to 24 months, but since I'm starting out slowly on the meds because of reactions I had in May, it may take longer--hopefully not. Take care of yourself. Jan in St. Louis > > Hi Jan, thanks for the welcome. I don't know what MAC is but I'm sure its not pleasant if it requires more meds. I lived in Fla. for many yrs. so I can understand how bad the humidity must be in St louis. I hope you have some kind of air conditioning to get some relief from the heat . > Sonny, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2007 Report Share Posted March 12, 2007 Hi , my name is Gloria and I had my first and thus far only tethered cord release in 2001 at age 49. How far apart were your 3- Laminectomies? I had been born with an Meningocle for which I did not know because I was an adopted baby. I started having pains in my left leg coming from my Lumbar spine, 3 MRI's later diagnosis was made and I then had surgery by a Neurosurgeon to release my cord and remove a Lipoma (fatty tumor). My 3 children were born normal years ahead of what I found out about my own problem. I was able to alert my dtr/dtr- in-laws to make sure that their children will be free of this condition. I spent lots of time wondering if there were any other adults suffering from this condition, how can I find out more info, what doctors to talk to and finding this group site has help very much. Take care, gloria in New York State Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2007 Report Share Posted March 13, 2007 hi gloria, how are you? to answer your question, i had my first untethered cord opporation in august 2004, however my dura had a leak and i had to go back in to have that fixed in june 2005. this is when my doc realised that my cord had gone back to where it was originally so he fixed it again. a week later my dura had a leak again so had to go down and have that fixed and spent a couple of weeks having my spinal fluid drained. im still leaking spinal fluid but as its not affecting me to much right now and we have decided not to have anymore opps. ive spent a long time about 2 years recovering and im left with a very weak left side and spasticity/myoclonic jerks. ive told my doc this and looking back i wouldnt have gone in for the opp as i am worse now but i am one of the unlucky ones that it didnt work for me but for those who it has worked for its absolutly great. you have to have a positive outlook and do a lot of reserch, something i didnt do as i spent a lot of time in denile about my condition. im glad to say that things are going great now im used to the way my body is now and intend to live my life to the full. i hope my experince hasnt put you off considering your opp, good luck and anything else you would like to know just ask take care of yourself tracy.. --------------------------------- All New Yahoo! Mail – Tired of unwanted email come-ons? Let our SpamGuard protect you. Quote Link to comment Share on other sites More sharing options...
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