Once again, I'm back

[Dave Hall]

Well that was very interesting. I just wrote a message about being gone for a long time, for many varied reasons, including computer issues that were resolved. And then KABOOM. But not fatal, as you can see, it still works.

I joined the forum back in 2012 and was somewhat active, but I get distracted, or sidetracked easily. Diagnosed in 2009, started betaseron that year. And I'm still able to function, a little, but vision is still doubled. My driver license is gone now, I have a state ID now I'm getting more and more bored with just lounging around.

After my job as a transit bus operator went away, and having to move to my sister's house in Tennessee, things have been okay, but I think I could really do better. This house sits on a mountain of limestone, hilly terrain is not something I handle well. Surviving is a daily challenge; I walk as much as I can, maybe 50 yards at a time on these hills. If it were all uphill, life would be good. The downhill side is most painful.

I'm wondering how I can make this change to a level, paved locale, without ruining any kind of family relations that may exist.

Financially speaking, it looks better living in a hotel. Extended stay. How many others here have found success with this idea.

I'm a city kid. Life in the hills doesn't work for me, but I've endured for almost 7 years now. So I've reached the point that I have to make a change. Now that the communication may be better, I can look in here a bit more often. Lots of issues to sort out, I've got time to do this.

Dave Hall

[Seasha]

Welcome back Dave! Glad you have resurfaced here on the message boards. I'm sorry to hear of you losing your job and having to relocate from the city to country. This must have been a tough decision for you to make.

On one hand it must be nice to have family around to help you with transportation and other needs. It probably helps with your finances too? I understand about living in the country as I do too, with hills and packed gravel to walk on. It's hard to get around and I can't walk very far anyway under the best of conditions. I'm thinking about investing in an all-terrain scooter or something similar to help me get outside and enjoy a change of scenery. Is this something that you might have the means and interest for?

I know nothing about extended stay at a hotel, so I can't help you with that. Maybe you might want to take a break away (vacation) from your sister's place and stay at one for a week or two? This might give you a different perspective and therefore determine whether it's something that you could live with.

Whatever you decide, I hope you find peace in your decision making. Take care and hope to hear more from you!

[jreagan70]

Financially speaking, it looks better living in a hotel. Extended stay. How many others here have found success with this idea.

Hi Dave:

I second the idea of staying in an extended living hotel for a week or two, even trying different locations to see how transportation and shopping would work at each location.

But financially speaking, I'm curious to know how that would work. In my area, rooms at one of the nice extended stay national chain hotels average $100 a night. $3K a month is $1K more than a nice furnished 1-bedroom apartment near public transportation. If that 3:2 ratio holds true for where you live, an extended stay national chain hotel is still on the higher end of expense no matter what the room rate is.

Your area may have other options that are less expensive, but may still be costly. The advantages to a residential hotel/motel are that you don't have the up-front costs of renting an apartment and you can leave whenever you like, but the price for that convenience is built into the daily cost of the room.

If you're on SSDI, you might qualify for a Section 8 housing voucher that could give you more affordable options for living in the city.

[Dave Hall]

Hi Dave:

I second the idea of staying in an extended living hotel for a week or two, even trying different locations to see how transportation and shopping would work at each location.

But financially speaking, I'm curious to know how that would work. In my area, rooms at one of the nice extended stay national chain hotels average $100 a night. $3K a month is $1K more than a nice furnished 1-bedroom apartment near public transportation. If that 3:2 ratio holds true for where you live, an extended stay national chain hotel is still on the higher end of expense no matter what the room rate is.

Your area may have other options that are less expensive, but may still be costly. The advantages to a residential hotel/motel are that you don't have the up-front costs of renting an apartment and you can leave whenever you like, but the price for that convenience is built into the daily cost of the room.

If you're on SSDI, you might qualify for a Section 8 housing voucher that could give you more affordable options for living in the city.

Hi, jreagan! No ssdi here, they say I don't have enough service credits. I have a disability pension from the job in transit, which is not bad; about 0.25% of what I used to make. If there was a good side, it is that I did get early medicare based on disability. So I could possibly get an all terrain mobility device.

Still the area just about sucks. Nothing around here, the grocery store is 27 miles away in a larger town. Handful of restraunts, none that would be within range of any kind of mobility device, like a quadrunner, or hoverround etc.

I suppose the underlying issue with this is that have not resolved the issue of not being able to drive anymore. Driving motor vehicles became my lifes work. Before public transit I was a medic/firefighter. The reality is that no one goes to work there without the idea "I wanna drive the big truck". That was me, and I did it. Where I worked, no one was allowed to specialize, we had to wear multiple hats. It was not a large enough company to have any "fire apparatus operators" but that is what I wanted to do.

Moving to public transit allowed me to specialize. And I got good at that. The classic operator is one who finds a route they like and drive it every day. I could not fit that into my head. To me that was a death sentence. I needed to see different things on a daily basis, so I was a substitute (sub) operator. I knew the city well enough to drive anything.

So being here on this pile of limestone and unable to get far off of it makes me feel stuck. The frustration gets compounded by not being able to walk that well. Spasticity kills me, and now with cooler weather on the way, it gets worse.

I'm envisioning (dreaming) of a scenario that I can access some places by walking. Need level pavement, and then I can do a lot more walking than I can up on this hill. So I will continue to look around.

I'm happy to get back in contact via this message board, chat etc. And I will keep in better contact.

Dave Hall

[Fishytrout]

WELCOME BACK DAVE

Thank you for letting everyone know what is going on with you, Dave. I really am sorry that you have to live where you do, but very glad you HAVE somewhere to live. I hope the Hotel living will work for you. Do you have a particular Hotel in mind? Is it close to places you can get food and such? Is it closely accessible to emergency services if, heaven forbid, you would need those?

Please keep us all informed. It may help others. Good luck to you.

[jreagan70]

Hi Dave:

If you meet income guidelines, you might still qualify for a Section 8 housing voucher based on income and disability without having to be on SSDI. It could be worth looking into. There might still be a way for you to live in the city, with level sidewalks to walk (or roll) on when you feel like it, and public transportation when you don't. Your local chapter of the National Multiple Sclerosis Society and your local Area Agency on Aging (which also serves people with disabilities) should be able to give you more information.

[Dave Hall]

Doctoring some more

Finally taking action on the idea that I have to do something new, I got in to see my PCP. We tossed a lot of ideas around, he gave me a referral to see a multiple sclerosis specialist, and do a new MRI.

The spasticity is getting worse slowly, making it difficult to walk, and that walking I can do is painful, at best. Get tired fast from fighting against my own muscles.

Then the idea that I could be a candidate for a stem cell transplant trial. I look at that this way: Fix the immune system problems, and spasticity can improve. Then, I'll like exercise a lot more.

Then the pay for it all idea comes in. Does anyone here have any experience with gofundme? My doc has patients who have put up go fund me pages, and had some success. My little pension won't do too much, if its all tied up with food clothing and shelter. Medicare is a maybe, at best; when I ran the idea of stem cell transplant by them, the CSR said my doc might be able to pull some strings and find a way they would look at it as more of a treatment than an experiment.

So I won't know anything for a few days. Blood for liver enzyme results may have some good, or bad news.

Frustration is driving all these ideas. At 55 years of age, I have about 10 years I could be working. When I turn 65, my pension might go way down. Kind of a time ticking away problem. And the uncertain future of how go fund me will perform, and pension going away.

In any case, lots of stuff going on here, but I'm hopeful that I'm not annoying everyone here.

I will keep in touch as I go through this stuff.