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May 30, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Thank you @suzie2017 and @windwalker. Thanks for your kind words. I first thought she was having mini strokes and having hearing issues . The hearing aids helped alots but there was still something wrong. Moms has been in a nursing home about 6 years and on hospice since January. Me and my step dad took care of her for a year before she went to the home. My anxiety is winning the battle most of the time with fidgeting and hand clenching and pill rolling (where my forefinger and thumb keep making a motion like there is something beween them that I'm rolling into a ball) not being able to complete a task. ( I am unable to make or answer the phone calls and its hard to explain it because I don't understand it myself) . My slow speech and stutter are apparent signs. Now my fingers and toes are twiching and have a mind of their own all day and at night too. Recently i have been tripping over nothing and falling into walls and furniture. Mom had hulusinations and she only told me about them after her diagnosis.
She said she knew they weren't real. I thought HD was a rare disease, but just like ntm, people dont talk about them enough. Sights like these can do wonders so people dont feel alone even with an isolating disease. Well thanks to everyone for keeping the conversation going. Katemn would be proud and is always looking out for us.
Becky

May 30, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@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

May 20, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@windwalker, I believe it was called vascular and interventional radiology. Where they cauturize, burn, the blood vessels from inside to get the bleeding under control in the lungs. Hope you are staying well an staying strong!
Becky

Mar 11, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@lainey, hello to all in the group and I hope everyone is staying strong. I know it is very hard to drink something your body is rejecting. Our gag reflex is automatic and mine is extra sensitive. So I add some juice to my water to flavor it and using a straw might help to get past the gag reflex while drinking thickens liquids. Best of luck and good health!
Becky

Jan 11, 2018 · Huntington's Disease in Brain & Nervous System

@hopeful33250 , @dolan, @oldkarl , and others on the Huntingtons and brain disorder group, I live near St. Louis, missouri. Where are you finding good care? What hospital or doctors are you getting care from and in what location? I am reading your post and researching recommended resources. You guys are so helpful to me and to others. I am so thankful to have others tell their experiences that way you don’t feel so alone. If i cant reply it is not because you are not being heard. I will be listening!
Becky

Jan 10, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@unicorn, if you are having chest pain, you really should get it looked into. I know having all of this really sucks and the last thing we need is one more health problem. Be sure you protect yourself by wearing a mask and gloves to any outing and especially at medical facilities. You will get asked why So you just tell them you can’t afford to get sick. By wearing a mask you won’t be affected by the overly saturated perfume on people around you. I use mine to keep cold air out of my lungs when I have to go outside. I also have one on at the gas station to keep gas fumes and exhaust fumes from entering my lungs and gloves on so i avoid germs on pump handles and door handles and any buttons on the gas pump. I think I get asked why I’m wearing my protection more from my doctors than from the General public. I’ve even had them tell me its not necessary, but I just go on doing my thing. So, Heres hoping we all have a healthier 2018! Take good care of you and come back with the good news of a healthy heart!
Becky

Jan 8, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@pkayh, Good day. Your words are very familiar. For years, before my diagnosis, I have said even taking a shower is exhausting. I couldn’t figure out why. But I’ve cut back to every other day just to conserve energy.
You asked about how to thicken liquid. There is a powder I think it’s called thickit. You can buy it at cvs or other places with a pharmacy. Medical supply stores would carry it too. You just add it to your liquid and stir. I used it in nursing homes for patients with swollowing issues many year’s ago.
Becky

Jan 7, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@nick52 ,Thank you for the information on ringing in the ears. Its been so loud, it’s distracting for A year now. It started when I started the big 3. Ive been to my ear, nose , and throat doctors and they sent me to hearing and balance specialist. They said there was nothing they could do because the medication was important in sustaining life and my hearing could always be fixed later.
They wanted to see me in six months, but i thought that we should be monitored closer than that. I will definitely try milk thisle.
Thanks again ,
Becky