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MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
Replies to "What does MAC infection do to the body if the patient does not seek treatment?"
@suzie2017 I was raised by two smokers. My mom ALWAYS had a cigarette burning in an ashtray beside her. They smoked up the house terribly. And traveling by car was like being tortured in a smoke box. Doctors tell me that growing up with so much smoke def contributed to my health condition today. I have always detested that habit.
@suzie2017 There is a lot to be said for an easy going personality. I would imagine that makes caring for him a bit easier. I have a friend who has Alzheimer's and it was obviously coming on at age 38. He would tell me the same stories over and over and over. His mother and Grandfather had it as well. He is 59 now and on disability.
@tutti I am so happy that you got your disability. Now you can devote your time to your health. There is a two year waiting period before you can go on Medicare unless you are on dialysis or have Lou Gehrig's disease. I can only suggest perhaps using charitable organizations that help pay for drugs and treatment or go to non-profit health centers like the Mayo Clinic, Cleveland medical, and others like them closer to you. When you go to a non-profit institution, they tend to charge less for services and work out a payment plan. The Healthwell Foundation has helped me out tremendously with a very expensive medication. If you want to share what you need help with, perhaps I can help locate some resources.
@tutti I'm on disability and Medicare...started at age 61...what would you like to know?
That is a very sad story. Any type of dementia is a terrible disease and as you know, very difficult on the family. I think it is sad for older people but it is a real tragedy for younger people.
@tutti, hope you are doing ok like most of us just hanging out in the background of this sight and soaking up the information when we can. I have been on disability and medicare for 14 years. I had a back injury while doing private duty nursing trying to help a patient get out of bed. I had a failed back surgery after trying everything else. I tried different nursing jobs but could not continue working and taking medication. I was denied disability the first time and appealed on my own and was approved the second time around. I have heard they almost always say no the first try so keep appealing until you are get your benefits. MedIcare is a benefit that come along with my disability so if you are not getting it you should contact your social security office. They deduct the premiums from my checks. It's a secondary insurance to my husbands for me. I have treatment resistant deppression, anxiety and had a hard time concentrating and finding my words sometimes. I sought many opinions from many specialist and was taking mother with me to many of my appointments. A neurologist notice symptoms of Huntingtons chorea in my mother at my visit. We both were tested and have the defective gene and will develop debilitating symptoms as our brain cells die. Recently I had a knee and foot injury just doing chores at home i started loosing my balance and tripping over my own feet. My physical therapist is helping me and my walker is a necessity now. I love everyone in this community . Im trying to keep up to date on this sight but its very hard and sometimes i have to force myself to delete messages. I saved some messages for reviewing at a later date. I hope everyone's memorial day was a good one. If you cannot work you should get disability and Medicare through the social security office that you have already paid for. Take care and stay strong!
Becky
@chinasmom Hi Becky! Thank you for posting. That is generous of you considering weight of your own troubles. I am bummed to learn that you & your mom have the Huntington chorea gene. I hope it doesn't progress to a point that it is debilitating for you. Stay safe and be careful! I just read that you are falling into walls etc.
@suzie2017 I am sorry that you lost your mom at such a young age. That had to be very hard for you.
I am very familiar with Huntington chorea gene (HD). We learned about HD many years ago after my mother in law died in the 80’s. We thought she had alzheimers. Some years later my husband’s brother was diagnosed with HD and then another sister. In summary, my husband had 6 brothers and sisters and two sisters had it and one brother. My husband was tested several years ago and he tested negative. Right now I have two nieces and one nephew with it. Hopefully, Becky, you and your Mom never get any symptoms.
Terri, I am sorry to hear you were diagnosed at age 40. That is very young. Did you live with a smoker and possibly got your COPD from second hand smoke? I am not familiar with Alpha-1 deficiency. Jess’s brother had Diabetes Type 1 and also COPD. The Diabetes put him on a fast track and when he had a flair up last November, he was hospitalized for 10 days before going in to Hospice. He passed away a few days later. It is a shame that your Mother passed away at an early age of 58. Smoking puts such a hold on people. I lost my Mother at her young age of 45 due to breast cancer. I feel very fortunate to be healthy and I am 69.