Help for a friend

[goatgal]

Who in the community can help by chatting with a neighbor, male, in his 50s recently diagnosed with progressive MS? He doesn't want to believe/accept the diagnosis. He's taught gymnastics, been physically active all his life, has a contractor's license and can build a house from scratch. He lives in a rural area and keeps bees. He's been advised to start with Ocrevus, but has not done so. I told him to sign up here but don't know if he will. He's coming to me for advice but the community knows more than I do because together we are stronger and more informed. Thank you one and all!

[carolek572 CommunityAmbassador]

Hello goatgal . I can offer advice to your neighbor that was given to me by my PCP when I was first diagnosed. Get a second opinion. I hope that they can and will join this forum. Keep Smiling!

[goatgal in reply to carolek572]

As the joke goes, denial is not just a river in Egypt. He's had multiple physicians tell him the same thing,, he just doesn't like their medical opinions. Thank you. I'll keep trying.

[Fancy59 CommunityAmbassador]

Goatgal, I can share common experiences and advise him where to look for a good neurologist. He really needs to speak to a doctor/neurologist to get advice about his condition. I'm sure if it's a aggressive progressive type MS, they would go ahead and put him on Ocrevus or something simìliar. Fancy59.

[goatgal in reply to Fancy59]

Thank you. I'll know more after I talk with him.

[NorasMom]

Why was he diagnosed with PPMS? If he's had ongoing symptoms, I'd start the Ocrevus and get a 2nd opinion. If these problems are all new, I'd get the 2nd opinion first. Regardless of what's actually wrong with him, remind him that he has an advantage because he's been healthy and active up to this point.

[goatgal in reply to NorasMom]

Thank you.

[Kit10]

I would offer to help but ...

his situation sounds much like mine and so I would be, as it were, the blind leading the blind.

I have posted a couple of times about my own feelings but no-one seems to know what to say to me. Maybe being told over and over to think positive and take Ocrevus is the advice he needs but it's not doing anything for me to the point where I'm thinking of stopping coming here altogether.

I wish him luck, but I can't do much more.

[goatgal in reply to Kit10]

That's much like where he is. He's had second opinions and sees a reputable neurologist. He doesn't want to start on Ocrevus , it's been suggested/recommended to him for more than a year now. I think he's frightened by what MS is doing to his physical abilities. I also suspect he's struggling with his self concept (who am I if I can't do what I've done for decades?). He called yesterday and asked if I would talk to him. As I said, he's a neighbor.

We met years ago when I retired onto 20 acres nearby. He constructed some outdoor projects, I met his family, we talked as neighbors do. When I was diagnosed with MS, he knew, and when 20 acres became unmanageable, and I sold the place, he knew. Now, on a smaller place, he's helped with smaller projects.

I suspect almost any older male would be more help to him than an old woman can be. I sense that his issue is denial, tied up in the idea of who a man is. He's of a generation and culture of manhood raised to "suck it up and power through it." As a builder, he understands things that can be physically constructed, handled, and dealt with. If a wooden building starts to lean, it can be straightened; if it falls down, it can be put back together. He knows on one level that this isn't possible with the human body, but on another level he wants to believe if a doctor just "fixes" what is wrong with his spine and his left side, he can be put back together. Even a new drug like Ocrevus won't put him back together the way he wants. Its only role is to stop further progression.

I sent him links to this forum, and MS News Today because there is so much to learn about MS. Unlike others, I won't urge him to take any specific drugs, but I will see if I can locate a drug comparison chart in case he wants to research drug options that he might be willing to try. I tend to have responses to drugs that are rare side effects so I understand his wariness. I want to hear what he knows about MS and the brain's ability to create new neural pathways when old ones are damaged because that's positive thinking. But mostly, I plan to listen and be a friend.

[Lizard50]

I'd be more than happy to try to speak with your friend. Just let me know and I'll pass my info onto you.

[goatgal]

Thank you. I hope he'll sign up here, in this safe space.

[Frances_B]

The Understanding MS MOOC is starting again in a few weeks - he may find that it gives him a safe space to learn about MS (and maybe come to some acceptance) without feeling pressure from people in a face-to-face or phone situation to start meds (or even worse, keep being told to "be positive"!).

ms.mooc.utas.edu.au/

Here's a drug comparison and info chart - put together by Prof Giovanonni

drive.google.com/file/d/1fW...

And here's his MS Selfie site

sites.google.com/giovannoni...

While the info on drugs etc will be related to what's available in the UK, it's still a really good resource.

logos

[goatgal in reply to Frances_B]

Thank you. Your understanding of his needs are similar to mine. Whenever you respond here on the forum, it has always come from a place of knowledge. I have great respect for your wisdom.

Though I don't know him well, I've known him for a long time. There was no one to talk to when I was diagnosed, absolutely no one was even interested. It was a lonely and frightening time. If talking to me helps allay his fears of the unknown, maybe that's a gift I am meant to pass along. As a (very) retired teacher educator I believe that knowledge gives us the power to deal with fear, uncertainty and the future. Thank you for the MOOC link. Unlike last year, I didn't receive a notice from UTAS that the course was beginning again. I will encourage him to enroll.

[Cutefreckles72]

Hi goatgal, I am sorry to hear about your friend's diagnosis of PPMS. It is true. He needs to start the Ocrevus infusion to start slowing his PPMS down. Everyone has different thoughts about Ocrevus. I suggest finding out for yourself. Everyone is different. I have PPMS and just knowing that there is a medication that slows it down gives me hope.

[lbenmaor]

He is so lucky to have you as his friend!

He needs to speak with a neurologist.

Leslie

[RoyceNewton]

G'day, hello to your friend I am impressed that he can build a house if I read correct. Not much older than me, He goy away with ms a long time, tell him G'day.

Royce

[ahrogers]

If he is interested in talking to me I am happy to do so. I am 54 with PPMS so can relate and give advice I wish I had earlier. Things like continuing to exercise at max ability and other healthy lifestyle practices, not just harping on starting Ocrevus. I do believe Ocrevus has done well for me though, no new lesions for past 7 years.Just let me know how to communicate with him if he is open to it. I put off going to the doctor when I first started having symptoms so understand the denial side of things too.

[tompumo]

I was diagnosed about 10 years ago, I'm 63 now. What I eventually came to realize is that this is the 'new me'. It took a couple of years. He should talk to others who have MS. It will help him calibrate himself.

[Tazmanian]

Good luck to your neighbor and talk to an MS neurologist not just a neurologist