OK, so lm still catching up here, but I love Iona60 idea to start a post about your volunteer ideas.
As some of you have said, and we all KNOW, there is life after our DX. It's just different.
So, what do you do? Where do you volunteer? Where CAN you volunteer? And how do you go about finding out?
Jes🌠
ps. I volunteer here!😅 Love every minute of it!! I also volunteer with the nmsa walk.
Just want to add, I'm volunteering a lot, and my LTD disability was recently approved for cognitive issues. I'm meeting with a LTD specialized attorney today because the LTD insurer may make an issue of my ability to function in society (give back) and contend that I'm able to work. I will let you know what I find out.
Ugh! That is not good! It amazes me how they want to try and take everything away from you, when you still have so much to give.🌠
Just been approved for LTD so erash i am definitely intrigued what happens for you.
For the post... I am currently volunteering Wednesday nights at our church tutoring/help reading with kindergarteners-3rd grade. The school lets the church bus about 20 kids that are at least one grade level behind in reading and the parents are happy that their kids are improving.
Also I have just interviewed with a hospital to volunteer there bc we have an influx right now with drug-addicted babies in the hospitals. Its been on the news lately showing that these babies improve and detox much faster when cuddled and held. Obviously the nurses do not have the time for each of these babies so they are requesting volunteers. Rocking does not take that much energy (I assume) I've yet to be approved or do this and I realize there must be an emotional toll as well...again this is my assumption but I know God has more for me/us
That's awesome Pbailz . I'm sure the kids enjoy it also and makes them feel special. As far as the babies go, Bless your heart! They need so much love and attention when they are 1st born, not to mention the rest of there lives. I hope you get approved!💕🌠
jes, I volunteer as secretary for my local chapter of the Pennsylvania State University alumni society. I also volunteer as host for the Friends of the Pittsburgh Symphony which is really a fan club for the Pittsburgh Symphony Orchestra which meets over cocktails and appetizers with guest artists and members of the PSO about six times a year. I volunteer for Save Our Symphony in Pittsburgh, PA.
Thank you for sharing that there is still a life after an MS Dx - but it is different than we had planned. I was a facilitator for my MS group for several years. I am currently on the Lifestyle Committee for our HOA where we just stuffed 600 Valentine bags to hand out on Valentine's Day morning to commuters and had a Valentine cookie decorating project for kiddos and donated them to our Fire and Police Stations. We are also holding a wine tasting this Saturday. I volunteer for our local Police Department and also for their YANA (You Are Not Alone) program. We call seniors or shut ins to make sure all is O.K. and visit every so often. The great thing about volunteering is that I can set my own time and hours. I have been told that "Volunteers do not get paid because they are invaluable". DEGU - Don't Ever Give Up! We can still be a valuable asset to society!
Makes me feel good knowing about the groups of seniors that get help. I used to help Seniors in my past job and feel I really let them down, but now I know there are many volunteer groups helping them! Thank you SueAB , what you're doing makes me feel much better.
Everyone has so many intriguing places they volunteer (and I mean EVERYONE) I'd love to volunteer for myself, but now that I can no longer drive and have no way to get to these places because of too many doctor appts (between my dad, mom and me) I feel I can't do anything.
THANK YOU EVERYONE!
Jennie62
So many good volunteering stories so far, crew - nice, erash Pbailz dmaskal1 SueAB ! And of course, Jesmcd2 ...the time you & Fancy1959 volunteer to help keep this online Community going (& growing!) is truly invaluable to this program's success!
Btw, I believe I've posted this before but my volunteer experience over the years involves working at local food banks whenever I can...and I was initially a volunteer myself at MSAA before I got a job here! (need I say more about how important volunteering has been in my life? 
)
- John, MSAA
Jesmcd2 met with the attorney and yes they are likely to try to take their money back if only based on the # hrs I volunteer...not to mention my other activities.
It is a decision b/w QOL (quality of life) and potentially their $
I choose QOL and hopefully my MS continues to allow me to enjoy that QOL!
Hi @erash! I was just approved for LTD so I'm following your story. I haven't done any volunteering just yet because I'm in a temporary living situation plus I've been concerned that if I do too much, they would try to take the LTD away. The contract between my employer and the LTD administrator requires me to file for SSDI so that's my next 'project'. I don't know what the balance will be between QOL and not losing the disability. There is no way I can work full time in tech anymore.
Hi Raingrrl
I'm in a situation , that while not ideal, I can afford to make a decision b/w QOL and LTD. I will not be home bound which is what LTD is essentially stipulating til I am forced to by MS.
my MS symptoms are currently such that I am able to "do". If necessary, I wouldn't go back to seeing patients. I wouldn't feel that I could do that safely but I could consider other work (such as return to teaching--which I hope to do even tho they will deduct from my LTD). The atty. called this "sheltered work" and could make a case that teaching on line lets me work around my bad MS days.
There is the risk that returning to work in any capacity, while encouraged by LTD, could cause me to become disqualified and lose the LTD.
Tomorrow, or in a month or in a year, my MS may be more limiting and I may not be able to "do".
I also have to apply for SSDI. If approved, this would be deducted from the LTD as well. The attorney will help me file for SSDi. I asked if I'm refused SSDI (initially is expected but on appeal as well) will LTD claim I must not be disabled then. He said they will use SSDI against me if refused and if approved. Their job is to keep their $
Each LTD policy differs and no doubt our situations differ too but I'm happy to share more of what I learned from the atty. with you. Message me if you'd like.
Quality of life, no matter how you make it or manage it is always a good thing erash .🌠
It has never crossed my mind that I may not be able to volunteer because it would affect my SS Disability. I have been racking my brain lately as to how I can volunteer to make a difference in this world. But, for me, each day is different. Some days, I can't even get out, so I don't want to fail at yet something else. Do volunteer activities get reported to the government? Surely not, but ??
Roxy444
Go to the SS site re. SSDI
It says work that is nonearning is also considered when determining eligibility. No idea, but I'm interpreting that as volunteering?
I have LTD long term disability and was told b/c they were paying me a fairly decent amt. they will do surveillance and look at not only the type but also the # hrs. I volunteer.
suspect SS doesn't have the resources to do surveillance on everyone.
As far as MS affecting my ability to volunteer, yes, there will be days, esp. In the hot fla summer that I will be restricted. I've told the organizations this up front.
There are so many ways we can volunteer or give back. I think the book narration that Iona60 mentioned could be something that's done at your own pace?
Then again, I don't have kids etc. so I have the freedom and time and otherwise I'd start focusing too much on me 🙁
Thanks for your reply! And I will check out the book narration mentioned 😊 I feel so limited...but we don't know what the future holds! I hope all works out well for you. That's scary they say will do surveillance as to your LTD (burocracy at work), but I hope you will get to do the things most important to you. 🌷
Oh Erash, it makes me so sad that a chance to volunteer and make a positive difference could be misconstrued as 'fit for work' and affect disability financial support. Surely the point is that we reach a stage when we can no longer meet the efficiency, reliability and health and safety levels required by commercial employers. In spite of all the 'Equality' laws surrounding employment we are all aware that in reality much of this policy is not adhered to. Employers want efficient, reliable staff - not slower workers who may need additional help and will be taking time off for relapses/recovery/hospital appointments, then returning with possibly even more workplace adjustments needing to be made as their condition progresses. Sadly, the world of work runs on efficiency and maximising profit.
I am still doing my little self employed job helping my neighbour, on lighter duties, so in government statistics I am classed as 'employed', although I am aware that commercially no one would consider employing me ! Unless I knew the person well and they were willing to make allowances, I suspect that I would not be taken on elsewhere as self employed at this stage. The point is that MS is an unreliable, degenerative condition and few employers would be willing to work around it at a cost to their own profit and convenience, thus making us less desirable as employees, even if we are capable of a 'limited' amount of work 'some' of the time. Governments need to recognise limited capacity and employability ! x
I am pleased that you all can still get out there and help others, it's so rewarding. Unfortunately my days of volunteering are over as now I have no driving licence until the DVLA decide otherwise, I depend on my husband to drive me places and with him working, it's near on impossible. Enjoy it while you can, blessings Jimeka. It's always nice to give back.
jimeka you give to others in so many ways--here with your kind words and humorous cartoons and birthday greetings as well as what you've said about your grand kids and family.
MS is a thief and steals bits of our life but we all are strong and refuse to relinquish our souls...
jimeka um hate to tell you this..... But you DO volunteer. Your time here has been priceless to me, in so many ways! Not to mention taking on the Birthday Club for us!! Hey even l know my limits.😅😅 We couldn't do it without you!
Btw, did you get johnMSAA 's birthday? 😁
Jes🌠
I thing it's WONDERFUL that we have so many awesome volunteers!
But.... How did you go about getting the job? For those that don't know how to get started? But want to? Ideas??
Such as....
Calling the ASPCA....
Local food bank...
??????
Coming guys......
Jes🌠
Jesmcd2 et al.
I found that it was tough to get volunteer work. I had to pester the organizations until they returned my calls. For one place, I just showed up at their door.
There's a website that lists volunteer opportunities and sends periodic updates in your area and within your interests volunteermatch.org
I was offline yesterday and am just catching up. Until the last year when my visual problems got worse, I was able to find many online volunteer opportunities. So for jimeka and others who are stuck at home, here are some that I found. The first 2 I did.
The Smithsonian Musuem has many documents, journals and records that need to be transcribed to a digital format. This was fun and easy and a very short time committment as it is one page at a time.
Smithsonian Garden Pictures - view pictures and write tags for items you see in them. Very easy.
gardens.si.edu/collections-...
Librivox is an organization that is using volunteers to read books that are in the public domain. They provide them free to listeners. I haven't volunteered, but I listen to their books.
OOOH! Iona60 These sound like great ideas! Thank you for posting them!
I love the Smithsonian museum etc.
Jennie62
Iona60 I wondered where you were! I hope you didn't mind l ran with your volunteer idea!. Going to snag your links also 😅
There is life after DX!!
Jes🌠
ps.glad your back!
Thank you Jesmcd2 for running with this. I am always looking for new things that I can just show up and do and that don't take a committment on my part.
Another good one to do is to find a thrift store that supports a cause you believe in and volunteer. When my daughter needed volunteer hours in high school, we found a thrift store that supported the battered women's shelter. We showed up at our leisure and they always had clothes that had been prehung on racks for us to hang up in the proper areas. This was very fun and rewarding. We'd only stay about 1 to 1 1/2 hours.
Read someplace that humane societies and animal shelters need volunteers to walk the dogs. This sounds like so much.
I would love to work with the animals at the Humane Society as well, but they are too far from me now. I remember going as often as I could to help feed the goats, baby goats, deer etc.
I love dogs, but I get knocked over too quickly...just ask my former dog (he looked like he was happy and laughing whenever this happened...before Dx. He loved doing that to me. Boy do I remember his tail wagging and his kissing my face - hahaha).
Jennie62
Not sure if they still have the deer, (they had many when the track-house building took away their homes...I was so mad at the contractors/builders). I think they have the goats now, but haven't been there in a few years.
Every time I got a cat or dog, the Humane Society is where I went. Dad and I made a practice of going there to feed the babies (animals)...ALWAYS and made sure the lovely animals there were given good homes. I sure miss having them, but because my dad falls too easily we can't have any cats and/or dogs.
I think most schools have reading volunteer programs. The one I volunteer with is called SMART, and requires only about 1 hour a week. If I'm not feeling up to it, it's really all right, though I have rarely had to miss. Most kids are not read to in their homes anymore, so many never learn to enjoy reading or get acquainted with good literature. I'm not always thrilled with the book selections, but the kids love one-on-one time, and they get to take the book home for keeps.
It's unfortunate that volunteering can be somehow used against us in receiving disability benefits. I hope our institutions and government program people can be educated about MS.
~The SPCA's are usually always looking for people to foster pets also. Just don't do it in my town. I have busted them twice now, for lying to people and not doing there job. They don't like me much😁 l have fostered 2 dogs and quite a few kittens for them in the past. That was also when my dad was an Animal Control Officer for the county. You wouldn't want to know the state of some of these poor things.
🌠
Jess, It's Fancy1959, I thought I made this post this morning but alas it went to that reply grave yard in the sky. Between tha MSSA chat room, being on the committee for our MS Walk here in Lexington, and hitting the bushes fundraising for the Walk, I stay really busy volunteering right now! I know you just as busy or even busier than I am. Great post by the way. One that was truly inspiring! Way to go!
Hey Fancy1959 l tried to send you a message yesterday also and it went poof too.😠 Then l was going to call you, along with a list of other people l really need to get in touch with, as far as our Walk and promoting our forum. And that just didn't happen either. Lol Maybe today!! 🌠
I am not a big volunteer person but a week ago I was instrumental in bringing about a vocal benefit to raise funds for MS Society. 10 singers including myself and our accompanist who is also for some of our vocal coach Who was instrumental in organizing this had a program it went very smoothly and brought in about $1200 for the MS Society. It was a good concert and well received. As a result I have been asked to talk a few minutes about MS and also sing the national anthem at an upcoming MS walk in May. This is Certainly a new opportunity for me to volunteer! I have known about my MS diagnosis for going on 11 years. I will be 69 next month. Sometimes the best way to volunteer is to use our talents.
itasara That is so awesome and very much appreciated I'm sure!!! And you're so right, about volunteering. If you don't love doing it, what's the point? You did an amazing thing and I'm sooooo excited for you congratulations!!!!
You deserve this Sara☺
Jes🌠
ps. What day is your birthday on? My daughter is the 11th
Thanks very much! And my birthday is on the Ides of March – March 15.
Introducing myself
Heat?
VACATON IDEAS PLEASE
Diagnosed in march. I can't believe its happened.
