Hello Diane. I have been reading your blog 'ALS from both sides' & am so grateful to find a patient's point of view . I have bulbar onset ALS & was diagnosed in 2013. it
It appears to be fairly slow in progression. I have a PEG tube and can no longer speak but still have strong limbs (apart from slight weakness in my left hand) My blood/gas levels are not so good (91.6%) and I cannot get on with the BiPAP At my appointment with my neurologist last week, a tracheostomy was mentioned but she said I would be a tremendous burden to my family. I am trying to read as much as possible regarding life with a trach but most of it is written by the care givers or the medical profession and not the patient. I feel my lungs will give out before my limbs. Do you have bulbar onset ALS? I'm still leading a full life and am happy so I'm not willing to go yet! I would love to hear from you and hope you don't mind me bothering you with my story. Kindest regards Jenny
thanks for the website you recommended on the question i asked about getting my husband a trach. very helpful and informative. sounds way more doable now. i will be bringing this up at his next doctors appointment. thanks!
Were you able to continue nursing for very long? I am lamenting over what to do with regards to work. I want to spend time with family, but I can't imaging not being in the thick of my nursing. I am a maternal child nurse in a hospital. My speech seems to be deteriorating fairly fast in my own opinion. Of course it is always worse after a day of work. But sometimes it is bad when I wake up. I have dropped down to only 8 hour shifts just this month. DX was Sept 26. When I checked with my work purchased disability, they said if I was getting SSDI, I would get less of the insurance Disablity from work. Darned if we do and Darned if we don't. I'm sure it just seems overwelming to me right now, but it is very frustrating trying to decide what to do. I go to the ALS clinic in INDY. Do you have one in FT Wayne?
I saw where you have been fighting ALS for sometime. Do you take Ritulek or any meds for it? My dad was diagnosed two years ago with it. He will turn 80 this coming up Thursday. He has limb onset. My dad is currently living in Dallas but is from Effingham, Illinois. How is your current condition if you don't mind me asking? I will keep you in my prayers. Kim
Hi Diane H, I am not trying to come off rude in the threads but people are biting at me so I am biting back. I bless you for surviving this disease since 1985, and I refuse to look at it as terminal. I am 29 years old and have been fighting nasty torso onset since 25, and I am about to switch over to pulmonetics LTV 1200 via invasive LTMV. I know that daily cleansing of the stoma, being very sterile, and proper suctioning is a must. Do you have any suggestions on how to avoid infections/complications because I want to make it 28 years like you. I know with excellent care and a little luck it is possible. I have a newborn daughter so I am willing to do whatever it takes to wage war with this wonderful disease. Have you managed to avoid most major complications. Sincerely, Kris