Hi there, my name is Bobbi Jo and my mom was diagnosed with ms January of this year. In these short few months she has declined so much so she is disabled and needs care at all times. She is confined to a wheel chair, complete blindness, oxygen at all times, swallowing problems, has a catheter and many more symptoms. I am struggling finding information on ms like this. When she was diagnosed in January it was due to numbness and weakness in her arms. She is currently in the hospital with aspiration pneumonia and a uti. We are currently trying to find a home for her to go to as she is now too much for me to handle anymore at home. This is so hard and sudden. Not to mention her neuro and drs aren't very informative I feel. We are going to find a new care team as well but need to wait until her medical assitance gets approved. I feel very alone and am looking for any help or support. If anyone knows anything about this, thank you in advance.
So sorry you and your mother are experiancing this. Doctor's don't give much info..........a team of MS Doctor's would be nice. Just some 'understanding' of the situation , some 'talk' time...........I am progressive with my ms, monthly, the speed of her decline is baffling...........I want to extend a big 'HUG' and pray you get some clairity. Push for 'action', your urgency is not their's. BREATH
bg, please call the ms society they can do the research for you, as well as tell you what is available to you.
So, so sorry. Although it appears each MS case is different, to go from numbness in arms to being completely disabled, blind, and needing a catheter in 8 months seems very, very fast even for primary progressive. And the needing of oxygen all the time has me baffled. It almost sounds like she has been hit with some sort of respiratory illness along with the MS. I wish I could give you more information, I'm still learning these things myself though. But I think she needs to be checked for something else along with the MS, but that is my very uneducated opinion.
Hi there bgrundhoefer,
I'm so sorry for what you're all experiencing. We do have a book titled "Caring for Loved Ones with Advanced MS" that might be appropriate and helpful. Give us a call (1 800 344 4867) and we can send you a hardcopy, or click this link and peruse the online version:
Caring for Loved Ones With Advanced MS