Sister said....

[Sggmcswain]

She said she would not let me live this way anymore. It is out of my hands. I tired to talk with her but was not successful.

[Ilia1392]

My caregiver is my husband. He does so much that I feel it would be better to go into assistive living, but he would not agree. I am progressing and not able to do much. I'm happy when I can wash the dishes and clean the counters, but want to sweep & wash the floors. Ocrevus did not help, and 3 days of steroids did nothing!!

[jimeka in reply to Ilia1392]

Ilia1392 i think after what I have read about Ocrevus, and this is only my own assumption. With PPMS Ocrevus does not offer a cure, it maybe just prevents ms was getting any worse. I think also you have to give your body a chance to get used to it. Don't give up yet, and I am sorry that the steroids didn't work, again they seem to have better results with RRMS. Hang in there, blessings Jimeka 🦋 🌈 🤗 🍫

[Ilia1392 in reply to jimeka]

Thanks Jimeka. Hanging in and not giving up!

[Nom_De_Plume in reply to Ilia1392]

@Ilia1392

Hi 👋🏼, may I ask how long you have been on Ocrevus?

Have you considered, and is it feasible, for both of you to go to an Independent Living facility together? I’ve visited a few and they are a great option if you can afford it. Couples can go in together. I’ve known instances where one or both spouses needed additional care and they arranged for an aid to come a couple of times a day for that. The same aid does similar work for other residents at the same facility. This way they split up her time. It is much more economical and flexible than living in an Assisted Living facility. Just thought I would share this perspective with you in case it might be something you would consider. I am thinking about it for myself actually! Best wishes for a solution to your dilemma. 😊

[Ilia1392 in reply to Nom_De_Plume]

Hi Nom: I had 6 hrs divided into 2 days in June. Not getting better even after Steroids. Guess these MS therapies don't work for me ... bummer

[Ilia1392 in reply to Ilia1392]

I think about assistive living, but definitely a no no for the husband.

[dianekjs in reply to Ilia1392]

Ilia1392 It’s still quite early in that case. The biggest benefits are not supposed to be seen for a year or so. Everyone will respond differently, but in any case it’s considerably too soon to gauge how it is going to work for you. Hang in there and try to think positive thoughts. 😊🙏🏻

[Nom_De_Plume in reply to Ilia1392]

@ilia1932

Yes, that is a bummer. Im wondering if you’ve had other doses after you started Ocrevus in June?

[Nom_De_Plume]

@ssgmcswain

Hi 👋🏼, What did your sister mean when she said that she would not let you live this way anymore? What was she offering you? Would you please clarify that? Thanks!

It certainly is difficult explaining MS and our general prognoses to family. I believe there are some nice booklets that you could give to family or friends that give a good overview of MS for that purpose? Do you need any help finding some?

Hang in there! 😀

[Sggmcswain in reply to Nom_De_Plume]

I don't know where to find them - she is on the phone right now. I'm working on not being so needy

[Nom_De_Plume]

OK. I will private message you tomorrow with some links, etc. It’s getting late here.

[goatgal]

Sgmcswain You have been struggling for quite some time. Surely it is frustratingly difficult to assert control over your physical body and your future; my heart aches for you. Though I don't know your sister or her motives, at this distance it sounds as if she loves you and hurts when she sees you struggling. Consider this: one way to view her intervention may be to see it as an expression of love. Many folks lack family members who want to help, so maybe you are fortunate.

[Sggmcswain in reply to goatgal]

Thank you, I talked with her. She said she is going to write a book about how the government has been so difficult to work with on this situation. I will pass this along, if that's alright.

[goatgal in reply to Sggmcswain]

When my mother needed assistance, her care cost more than my monthly salary as a teacher.She was fortunate to be at a place which couldn't reject her when she had exhausted her savings. Now that I have reached the age she was then, I am terrified by the thought of becoming in need of assistance without the means to pay for it. I could deal with agencies, facilities and doctors for her but it looks as if there is no one to do that for me. My sister and I are close in heart and spirit, but she is in Missouri and I in Virginia, so,we can't really help one another. I learned in school that the ancients put their aged on hillsides for Wolves to devour, or on ice floes pushed out into frigid water. sometimes that seems a kinder way of dealing with infirmities and age than the American way. Bless your sister, and thank her for me. Let us know when she writes her book. In the meantime, i am holding you in the light.

[goatgal in reply to Sggmcswain]

Sggmcswain I answered you but forgot to put your name on the reply. I hope you can see it. I am thinking of you.

[mrsmike9]

This entire thing sounds very tough and hurtful. So sorry...