Finding local connections

[Hydranea]

So, I’m reaching out because I’m feeling alittle isolated. I live in New Hampshire near the Vermont border, and I have MS. Being mostly homebound and no support makes it tough to connect with others, with or without MS. I was wondering if anyone else lives in a rural area and feels cut off from support networks? If you do, I’d love to hear how you managed to find help in your community. It’s hard to connect to people who don’t know MS for I feel they think I’m looking for a care giver when I’m just looking to find a good honest friend. Thanks in advance for any advice!

[lbenmaor]

Welcome to our group Hydranea! This is a great place to learn from others.

I look forward to hearing from you.😀Leslie

[Helpmeup]

Hi Hydranea. Isolation can be a problem for many of us. I live in a big city and can feel quite isolated too. There have been many posts with similar complaints about feeling isolated because MS limits us in different ways. The only advice I can offer is to reach out online to groups like this one. I reached out a few years ago, and I'm so glad I did. The people on this site have made me feel like part of a MS family, have helped me and supported me with sound advice, lots of good laughs, a shoulder to cry on, and even sends virtual hugs when I need one.

I'm glad you posted. We are all here for you. Hopefully, you will make some good connections and feel a bit less isolated. Look forward to hearing more from you! 🤗

[Raingrrl]

Hi Hydranea,

I understand. I’m in a similar situation. When my DMT made me very ill a couple of years ago, my family convinced me to move to be with them in rural Wyoming. I had been living in a metropolitan area where I had lots of friends including a couple of people with MS. It’s very different and isolated here. My family tries hard to be supportive and they think they get it but they really don’t. I’m over 5 hours from my neuro and can’t participate in the activities there with his other patients. Some days I’m ok with it and other days I’m not.

[Gstrait in reply to Raingrrl]

Hi, can you find a gym close by you or if your health ins. has any online classes like Silver Sneakers, that will help you. There are great people on here to talk to and we all understand what you're going through. Hope you feel better soon. 🤗

[Hydranea in reply to Raingrrl]

Hi Raingirl,

I believe we are in the same boat. The family I have left don’t get it either. I’ve given up telling people I have MS. I just say now I have problems with my back and I walk very slow.

Otherwise, I get this look like you got MS? You’re going die! Well, yes I am, but so are we all! Or I get a look like I’m contagious or something, so I just let the ignorance go.

I don’t think people look with their hearts anymore and can’t see what a warm giving person I still am. I’m still accepting for I was diagnosed later in life and it been just 3 years.

I was always in the seat of helping people and now I’m the one that need help. It’s all a struggle, but glad I found something to connect to people who understand it.

[AquaZumbaFan]

Hi Hydranea!

Welcome to the group! I have lived in a rural setting for 32 years.. I am fortunate to have found this lovely community just after I retired.. I am also very fortunate as I go to the gym several days a week for water classes, even though it’s a bit of a hike..I have found other people that actually have MS at the gym and other folks that have other issues..Everybody has been very kind and understanding.

[Gstrait]

I don't live in a rural area, but can feel the same way in a big city. Maybe you can find a gym, support group, this is a great group of people bc we all understand each other. Hope you feel better soon. 🤗

[CatsandCars]

There is a website called MyMSTeam. I am not crazy about the site and the way it was designed. It's very...busy, in that there are a lot of things going on. I don't know how to explain it. But you can connect with people who have MS. There weren't any people too close to me, but there were some I was close enough to, to where I could manage to meet up with them if I didn't mind driving a bit.

It's far from ideal, but it might be worth a shot.

[Hydranea in reply to CatsandCars]

Hi Catsand Cars,

I appreciate the tip! I didn’t know about that link and will check it out!

I have a dog and cat that keep me company, but they can’t help with laundry! My MS affects my right side, so my right hand is numb and drops everything. I struggle through it, but I swear there is a big magnet underneath my floor.

Have a good day!

Thank you!

[CatsandCars in reply to Hydranea]

Good luck.

Sorry to hear about your magnet situation. It sounds really frustrating, but I love that your humor put it in cartoonlike terms! 🤣

[Brindisi1]

Everyone needs a good friend or support I hope you find something I don't know if you go to church or not but perhaps you can foster some friendships there or if your community has an art center that has activities maybe or whatever I know it's difficult on top of everything else best of luck on your journey and we welcome you here you can vent or say beautiful things whatever it's welcome

[swiftpoet]

Do you get out at all? How far north are you?

[Hydranea in reply to swiftpoet]

Hi Swiftpoet,

I don’t get out really, only for medical appointments.

I found one lady that I can hire, but she has a requirement of 3 hours. So, I try to combine things to accommodate that.

Everything else I get delivered or have a service do my lawn. I’m sill mobile, but do walk with a cane outside of my home. I drive alittle bit, but not far. I try to get my young lab to the dog park for play.

I live near Hanover, NH, home of Dartmouth College. So, I’m more in the middle of New Hampshire.

[swiftpoet in reply to Hydranea]

The reason I'm asking about that is my family is over in the Northeast Kingdom in Vermont not far from the border to New Hampshire and maybe they know someone looking for some part-time work. I was wondering how you were from them They are north of St Johnsbury maybe just west of Colebrook or Southwest of that. my nephew and his partner have an organic farm there. I don't know if either of them has I'm available but it's possible if you're not too far from there that's why I was asking? also I get rides if I want them through the insurance company. I'm in Virginia and I'm pretty much stuck at home too with the wheelchair and disabled husband and son but they've been able to help me so far. I've been worried about using one of the rides the insurance company provides because we can't handle perfumes without getting migraines. for cat hair and danger. that might have to change soon and it worries me but you might want to check with your health care insurance because they should cover rides. they might give you a cash allowance for them if there isn't a service in your area

[swiftpoet in reply to swiftpoet]

dander

[Hydranea in reply to swiftpoet]

Hi Swiftpoet,

Thank you for your kindness and helpful support. I’m about an hour and 15 minutes from St Johnsbury, so probably more an 1 hour and an half. My dog came from Irasburg, VT, so I do know that area. It’s beautiful country for sure. I’ve been looking closer to home, just can’t find anyone. I did find a boyscout troop that needs donations for trips, that are going to help me with spring clean up. I just worry for I have PPMS and holding on to being mobile, but getting slowed down more. My lesion is mostly in my c-spine, so losing my upper strength and hits my right side on weakness and hands. I’m happy to hear you have someone to help you, but my fear is the wheelchair for I don’t and not sure what I’m going to do from there. It’s hard asking for help and trying to accept this illness on what it takes from you. I’ll look into my insurance, I appreciate that suggestion.

Hope things remain well for you and your family.

[swiftpoet in reply to Hydranea]

Sis used to live in Irasburg. Now, Waterford, VT, off RT 93. Also, for your land/gardens, USDA SCS Master Gardeners usually need volunteer hours.

[swiftpoet in reply to swiftpoet]

nhnonprofits.org/funding-al...

[wowzors77]

Hi Hydranea ,

I live in NH as well and I understand nothing is really in walking distance. I had to limit myself a lot after I was diagnosed as well. So now I go on short walks in my area. I have also talked with people who have had the same reaction but after I started explaining more details of what I was going through people seemed to be more curious and even some did there own research to educate themselves. I also had to learn to speak about MS as something of just another annoying thing i deal with but it’s not the end of the world for me. I guess what I mean by that is I try to always stay positive. There are some people who judge but I have found a lot more people tend to be more understanding of the situation.

[swiftpoet]

iod.unh.edu/nh-disability-h...

[swiftpoet]

disabilityresources.org/new...

[swiftpoet]

New Hampshire offers a variety of resources and services for individuals with disabilities, including financial assistance, support for independent living, and access to assistive technologies. Key organizations include the New Hampshire Department of Health and Human Services (DHHS), the New Hampshire Council on Developmental Disabilities (NHCDD), and the Disability Rights Center of New Hampshire.

Specific Resources and Services:

Financial Assistance:

New Hampshire provides Aid to the Permanently and Totally Disabled (APTD) for individuals aged 18-64 with physical or mental disabilities.

Developmental Services:

The DHHS offers a range of supports and services for individuals with developmental disabilities and acquired brain disorders, including service coordination, day and vocational services, and personal care services.

Assistive Technology:

The Aging and Disability Resource Centers (ADRCs) provide training, education, and assistive technology services.

Independent Living:

The New Hampshire Statewide Independent Living Council works to remove barriers to independent living and increase supports and services.

Advocacy and Legal Representation:

The Disability Rights Center of New Hampshire provides legal representation, advocacy, and information to individuals with disabilities.

Grants:

The Harry Gregg Foundation provides grants for various purposes, including medical treatments, continuing education, and assistive technology.

Employment Support:

The New Hampshire Employment Leadership Committee focuses on advancing the inclusion of individuals with disabilities in the workforce.

ServiceLink:

This Aging and Disability Resource Center provides information, referral, and awareness services for individuals who are aging or disabled.

Medicaid Waivers:

New Hampshire has four Medicaid waiver programs that provide home and community-based supports.

olmsteadrights.org/self-hel...

drcnh.org/

[Hydranea in reply to swiftpoet]

Hi Swiftpoet,

I never knew there was so many resources to use. I have my homework cut out to check these out. I wish I could give you a big hug in person!

Heartfelt thanks and take good care!

Ps, I did try to contact GSIL, but I’m in an area they don’t assist. I was told by the MS Navigator that I probably have to move to places like Concord or Manchester, NH to get the best assistance. Ive been in my place over 30 years and im still living with my memories of my late husband. Probably a choice I’ll have to make, but a very hard one to do. Emotion always gets in the way.

[swiftpoet in reply to Hydranea]

I can't tell you about all my dead ends. Don't give up! How far to Waterford? Today is busy but ask if you need help. Also, glad to chat on the cell.

[Hydranea in reply to swiftpoet]

Your wonderful! Waterford Vt is 1 hour and 10 minutes from where I am. Love to chat sometime for I can’t get my animals to speak! I’m a trooper, I’ll hang in there! Just so nice to find someone who understands and don’t look at me like a m damage goods. 🥰

[swiftpoet in reply to Hydranea]

I get tired of the pessimism and the lack of belief in me.

[Hydranea in reply to swiftpoet]

Well said! I’m still the warm hearted person, I just have a few hiccups now. I have changed for a better person living with MS. However I always wanted to help people in need for my mom taught be always be respectful of others.

[swiftpoet in reply to Hydranea]

I have a group of MSers and other folks I help. It's minor stuff, but it makes me feel like an adult of value.

[Hydranea in reply to swiftpoet]

I’m sure as I, we are grateful that you do!

It does help to be useful too.

[swiftpoet in reply to Hydranea]

Talk soon!

[swiftpoet]

entyrecare.com/how-it-works...

[swiftpoet]

Good luck! Need help with an application? Ask.