Connect with others who understand.

  •   Learn from expert-reviewed resources
  •   Real advice from people who’ve been there
  •   People who understand what you’re going through
Sign Up Log In
Powered By
Real members of MyAmyloidosisTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
October 2
 · 
Reactions

Answer Summary

Members rallied around a fellow community member facing frightening symptoms from Amyloidosis, including dangerously low blood pressure,... Read more

Members rallied around a fellow community member facing frightening symptoms from Amyloidosis, including dangerously low blood pressure, weight loss, confusion, and exhaustion from navigating multiple new doctors. Several members shared personal strategies that have helped them cope, including midodrine for low blood pressure, salty foods like olives and Gatorade, rollators for safe walking, clinical trials, and adapting exercise routines like switching to electric trikes or aiming for small daily step goals. A recurring theme was the importance of finding a knowledgeable medical team, leaning on faith and loved ones, and adjusting expectations with grace while still pushing forward.

A MyAmyloidosisTeam Member

Thank you Vern. Yes, I give the walking a go as soon as I feel enough air in my lungs to launch, into a walk on our trail. Once it would be a 2 to three miler, but now if I can get in 5000 steps I consider it a triumph for the day.

October 13
A MyAmyloidosisTeam Member

Richard

I am 86 and have had most of what you describe plus other serious symptoms and issues. I moved to an independent living facility with my wife due to these problems. I had difficulty walking across the room. Simply stated, I was highly deconditioned.

I now walk the halls early in each morning. The exercise has been my best medicine. My deconditioned body has improved to permitting me to walk one mile on my rollator in 30 minutes. The improvement was small each week, but real. Life is better despite my health issues and symptoms.

My recommendation is simple: fight your medical issues with exercise.

Tom

October 5
A MyAmyloidosisTeam Member

I love to see positive comments on exercise. Some of you may tire hearing me to stress exercise as well as: eat healthy, stay socially engaged, and keep a positive attitude. So keep those rollators rolling.

Richard ,I was on midodrine for perhaps a year to raise my blood pressure--prescribed of course by my amyloidosis cardiologist. It worked. Now my high ranges from 93 to 110 which is pretty much what my family's bp is.
vern

October 13
A MyAmyloidosisTeam Member

Well the dam donut possibly was not a good one but HEY! if it made you feel better .😀.. Now so many variations of this dam disease so you need the medical professionals provided you are with a team that knows Amyloid .. I can only speak for myself but just the no energy and going to sleep at the traffic lights if I stopped too long ? The time I went to sleep in a car wash was a real funny story .But the blood tests showed issues with the kidneys and eventually they did a biopsy . I guess I was lucky as like the heart the biopsies were a hit and miss . These days they have a dye that grabs the amyloid and the biopsy is not the holy grail . Now. I was lucky to get on a trial and you sound worse that I was so the trials are free and possibly like me a $6 mouth wash .. Sure better than the $28,000 ... monthly said my team ..
Early detection is the key .. All the best . and Richard that was 14 years ago so ...

October 2
A MyAmyloidosisTeam Member

without "leaning on many arms" it would be even worse for sure. Family, wife, doctors, staff, this great group, and of course the "everlasting arms" I don't really know how I'd be doing. Thank you William.

October 13

Related Questions

View All
A MyAmyloidosisTeam Member asked a question 💭
Bay City, MI

A MyAmyloidosisTeam Member asked a question 💭
Milton Keynes, UK

A MyAmyloidosisTeam Member asked a question 💭
Milton Keynes, UK

Continue with Facebook
Continue with Google
By joining, you accept our Terms of Use, and acknowledge our collection, sharing, and use of your data in accordance with our Health Data and Privacy policies.
Already a member? Log In