DEPRESSED

My heart aches for you, . You are far too young. I don't know much about Tolebrutinib except that it is in the clinical trial stage and that is has shown promise for both RRMS and SPMS. Do you think your doctor can get you in on the trial? If you do go to a nursing home, do you have anyone who can advocate for you, ensuring you get all the medical attention and physical therapy you need? The transition to a transport chair has got to be devastating for you, but it doesn't have to be the end. My father transitioned to a wheelchair with SPMS and still had a good quality of life for many years. He was a social person, so he was happy as long as he had people around him. He did spend his last ten years in nursing homes (his late 70s through his 80s), but he was an active resident for most of that time and we spent lots of time with him. I hope you can stay out of nursing home care, but if you do have to live in one, please be picky. Look for one with a good ratio of RNs and LPNs to residents and with relatively low turn-over of staff. Those are signs of good nursing homes. Also, remember that you are a resident, not a prisoner or even a patient. If you hate it there, you can transfer somewhere else. Your county should have a dial-a-ride program with handicap access or handicap accessible buses. If someone wants to take you to lunch or to dinner or to Walmart, have them call and set up transportation for you, and then go. You don't need permission, though you will probably have to check out. All nursing homes are required to have ombudsmen, advocates who work to resolve complaints in your behalf. Get that information before you move in and make sure it is accessible at all time. Remember, you deserve to be treated with respect at all times. Accept no less. Also remember that we are here for you whenever you need support or a place to vent. Sending tons of gentle hugs your way. - Lori (Team Member)