PPMS community

[asister]

My sister has primary progressive MS and I'm finding very little online chatter. Anyone know of a blog for PPMS diagnosed and their families?

[MsBoo]

I have PPMS. and there are others here.. I don't know of any specific Facebook area that is specific to PPMS.. if you find one, please post... anyone?

[asister in reply to MsBoo]

PPMS

[asister in reply to MsBoo]

Sorry for the blank message, still trying to figure out how things work. I joined this group to learn more about ppms and help my sister as I can. She has been the athletic one in our family and still exercises at a gym five days a week but it’s getting harder as her weakness grows. Balance is also an issue now. I’m interested in how others with ppms are living their lives. Thanks

[ahrogers in reply to asister]

jimeka do you have any input?

[kwhompus in reply to asister]

I too go to the gym 5 days a week and even better,go swimming whenever I can. Going to the gym is like shooting a deer with a bb gun but I go anyway. Swimming makes everything feel better but stay in the cooler water. I too am waiting to find a web sight more in tune for ppms. Seems that the need is here for that forum.

[Hidden in reply to kwhompus]

Hi sorry to jump on you're comment. I was going to put a post up to ask if I was to take my partner who suffers PPMS into the hydrotherapy pool and saw you're comment. How long would you recommend for the 1st time? I dont want to over work him as he suffers extreme fatigue but hydrotherapy is something he really wants to try. Thank-you in advance

[kwhompus in reply to Hidden]

I find that ,the colder the water the longer I can exercise. IN fact, if the water is 80 degree's f or less I don't become tired at all. best exercise ever!

[TDonahue58]

Try MS Shift.comShift.com has a good Buddy program to align new MSers with a Buddy who can help guide, chat and chat.

[asister]

Thanks for the replies. Had anyone here donated directly to a PPMS organization?

[sashaming1]

A few that I've found - FYI:

drgarysmultiplesclerosiscur...

ppmsdotblog.wordpress.com/

momentummagazineonline.com/...

[Hidden]

Hi my partner has Primary Progressive MS he is on a group on Facebook called PPMS there a great bunch and so helpful with advice and information. My partner loves the group and gets a lot of inspiration from other's. They are very welcoming to family members aswell.

[asister in reply to Hidden]

Thank you so much! I will check on that Facebook group