DEPRESSED
I'M 51 YEARS AND I'VE HAD MS SINCE 14. I'VE TRANSITIONED FROM RRMS TO BEING IN A TRANSPORT CHAIR WITH SPMS. I'M ALONE. NO TREATMENT. DRS CAN'T DO ANYTHING.
Hi, SMILES. While I know it's not the same as having support in your daily life, please know you are not alone in this community. We have a number of members with SPMS and they can understand what you are going through.
You mentioned there are no treatments and the doctors can't do anything. Is that because you have tried the treatments for SPMS and they haven't worked? Because there are some treatments that may help. Here is a piece from one of our contributors with SPMS (also, check out the many member comments at the end of the article) -- https://multiplesclerosis.net/living-with-ms/my-slide-into-secondary-progressive
The transition to SPMS can be daunting and scary. I don't blame you for feeling depressed. Do you have anyone you can talk to? Please know you are welcome here anytime you need to chat!
We're here for you!
Best, Erin, MultipleSclerosis.net Team Member.hello Erin!! I wasn’t diagnosed quite as young as you, although I believe I was in high school when I first experienced the numbness— the family doctor did not
Know what to think of it, & soon it resolved!! I was diagnosed with MS in 1982 & have been in the secondary progressive group for about 25 years!! I have always been on a DMD!! For the last 10 years — more
Or less, I’ve been on Ocrevus & have been doing great since I had to leave my stressful job about 23 years ago!! I still walk my dog 2
miles ++ everyday!! MS has messed up my short term memory & I was forced onto disability at that time!! Life is good in spite of MS!!THANKS EVERYONE YOU BRING TEARS TO MY EYES..
DR TOLD ME Mayzent DOESN’T WORK MAYBE WORSE AND METHOTREXATE WEAKENS IMMUNE SYSTEM. SO I’M ON DEATH ROW GOING TO NURSING HOME. ONLY GLIMMER IS Tolebrutinib BUT DON’T KNOW. DOES ANYONE KNOW ANYONE KNOW?
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)
Oh smiles, how I wish I could be there for you now to hug and support you!!
