New Here ..Looking For Update

[Syzygy6]

I'm new here and am looking for updates as to events upcoming, as those posted have passed.
I have helped and supported my wife, who has MS, across 35+ years. This past year, she got stuck in a nursing home and might not leave. Truely terrifying for her...

I came here to find a greater degree of empathy and advice, as this subject brings out the best..... and worst in people.

[Dorothy Saunders]

Syzygy6, Welcome! You are definitely a longterm caregiver, so I'm glad you've found us for support.

We will be having weekend respites in January, March, May, and July, and our annual conference is in October. These will all be in the eastern part of the country. We love it when people volunteer to plan events in other regions. Our second WSA cruise is scheduled for the end of Jan. More info about all of these events will be posted on our homepage and on this forum in the coming weeks, so check back soon! Please note that you must be a supporting member to attend these events.

[secretflower]

Hi Syzygy6, welcome....if you have to be here, this is the place to be.......empathy & understanding abound....I am so glad you reached out & look forward to getting to know you.....others on this board will be able to advise you regarding local support groups & respites, I am sure.

[Kronberg]

Welcome. I've been living with the MonSter for 25 years. It doesn't get any easier, does it?

You'll find lots of understanding support here, not just from MS caregivers. In so many ways, we're all in the same boat.

When you are comfortable sharing your location you may find there are small groups who meet locally, aside from the big events. Also, I once met up with a wonderful WS on a road trip. I hope to do that again some day.

[Kronberg]

BTW, I'm in NE Indiana. I don't post my location on my profile. I'm not sure why.

[LarryB]

Welcome

Where are you from? I hope you are near a support group, if not, we will be holding telephone SGs. There was a recent respite on the west coast and in St Louis.

We will be scheduling more - and we can help you to set up any weekend event you might want. Call the office or PM me.

Larry

[qtrhrsemom]

Welcome to the family Syzygy6! So sorry to hear about your IS being in a nursing home. That's really difficult.

((((((Sysygy6)))))) (hugs)

[Devotion and Hope]

Hi, Sz. ((((Sz))) that's a hug. welcome.
If you are a supporting member (meaning you've paid $35 for a year of membership) you'll be able to attend all the events including support groups, respite weekends, conferences, etc. How you find out about them is by going to the Home page (upper left of this one). And, you'll receive emails called "Member Minute" as well as our quarterly newsletter. If $35 is too steep, we do offer reduced rates, so contact the office anyway. There are also some special discounts now for military spouses.

The Home page is also where you can find listings of support groups state by state (look at the links at the top of the page).

[Syzygy6]

I live near Corning, NY - upstate - and at least 5 hours from NYC for those who sometimes forget how wide NY is.

As to MS, I highly recommend investigating LDN, estriol, green tea and a low inflammatory diet. Unfortunately, my wife wouldn't diet, and didn't like green tea or fish. She developed back trouble which brought on Oxycodin - that wiped out the LDN. The FDA came down on estriol in compounding pharmacies to protect Wyeth, Inc. profits. C'est le vie.
Syz

[rotton50]

Syzzzzzzz,

Check out our respite for Wellspouses down on the Eastern Shore of Virginia.

https://sites.google.com/site/wellspousehaven/

Free to paid members of the organization.





BTW, we tried LDN with some success, at least for a while. Did the estriol thing too. Plus a bunch of different supplements and I mean A BUNCH!

Tried Avonex to no effect and Copaxone with limited success.

She ended up on Tysabri which stopped the MS in it's tracks. Unfortunately it was too late. She lingered in an almost quadriplegic state for about three years until she decided enough was enough and stopped all medications.

It still took another 8 months to die.

But you know what? Life moves on. We grieve and then we go about the process of rebuilding a new life.

[Syzygy6]

All I can say is wow!

My own joke....that isn't a joke

How could you find the Caregiver in a random crowd?

Play the movie "High Noon" and see who weeps the most.........

Thanks,
Syz

[wheeliezdryver73]

glad you found us!!! Look forward to getting to know you! Feel free to come here anytime!

[LarryB]

We have a few members in upstate New York - if you're interested I can help set up meetings. PM me.

Larry

[ProudMommyDebbie]

Welcome Syz

((((Syz))))
Many hugs to you.

Hope you can connect to people in your area, but also visit here often.

We are all a support to each other in this hard life we have been given.

[Fleagle]

Welcome to a good place. We have been dealing with this issue since 1991. We have tried it all from the magnetic beds to the tea, to the research on bee stings to the latest getting your veins and arteries straightend in your neck and head. Hang in there we know its hard and at times excuse the words ( Hell). Benjamin