I often worry about the future, if my symptoms get worse (still no dx). I live on my own and recently went though a break up, so I'm more or less going through all this on my own now (not that he was understanding or helpful any way). I have been living on my own for about 5 months, it was a big step to take and I wasn't sure how I was going to cope on my own but I have found that doing things gradually, like house work although it takes a ridiculously long time it is better for me in the long run. It's shown me that I can still do things and at the same time has helped me realise my limitations. Guess it has been a learning curve for me.
As I'm still able to drive, although only short journeys and can get through the day without too many issues I am coping at the moment. But if things don't improve who knows what I'm going to do. For now I just force myself to get through the day, being self motivating helps (also putting on music that has a good beat in it keeps me going).

My family are very understanding, but I personally don't like asking for help, I'm stubborn and prefer to be independent. I guess I don't want to feel defeated. But I know that in doing that I push myself too much. It's best to ask others for help when needed. I also now know who are my true friends and know that if I need them they will be there for me. It's amazing how when things happen in life you find out who will really be there for you.

I'm half asleep so hope that makes sense

Great topic, Lynne. I know this has been a concern for me since I'm single. I look forward to reading how others handle things.

I've been alone ever since I was dx'd back in 2007. I am lucky in that I can still walk, drive and get around to place where I need to. I spend pretty much each and ever day holed up in my house here. I often think of what I will do when I lose more mobility. I guess everytime i think about it, I try to put it out of my mind real fast. When it does stay in my head, I think of moving somehwere very remote where I can just be alone, no burden on anyone, and just exist as best I can with whatever. Maybe I'm not planning very well or maybe I'm a little in denial. I don't know. I do know that I am one who pretty much would rather be alone to rot than to have someone, even a professional caregiver, taking care of me. I suspect maybe if I get to that point, I will find somewhere where I can live alone. I'll take up smoking again and get myself lots of Cuervo (tequilla) and see what gives out first; my lungs, my liver or my kidneys.

@Bobby, Cuervo?? Patron dear, Patron! lol

Bon, I have a taste for Cuervo and developed it when I used to shoot lots and lots of pool. My good friend "Jose" (Cuervo) always took care of me! Call him my future, cheap, in house, "caretaker". LOL! It's been a long, long time since "Jose" and I used to hang out together. I have to wonder if I can still get that stuff down!

Did someone say Patron? lol

Seriously though, I live alone and have no family here (the only reason I'm still in CT is because my kids are here...they live with their Dad. Otherwise I would move to Maine in a heartbeat to be with my very supportive family.

I dont have a dx yet but am declining rapidly to the point where I got a cane this week. I was very active before this and sometimes push my self but pay dearly for it later with really bad fatigue and worsening symptoms. That said, I just try to do one thing each day, even if that one thing is only making phone calls. When I go shopping or run errands I give myself alot of time to get them done due to mobility, weakness,tremors and coordination problems. The cane will help alot with that Im sure.

When I have my kids I just push through it at soccer games,etc. But they know that I can;t always be out shopping too long before I feel like I can't walk anymore and start shaking really bad. They are so great about it :) Again, the cane will help in that regard as well.

There are days when its so bad that Im afraid I'll end up housebound. If that happens I will have some difficult decisions to make. I may have to move to Maine and see the kids less but that would really kill me emotionally. ugh..no easy answers!

I have a home health aide who comes in three times a week.
This helps greatly, but I got lucky and got a great aide. In addition, I have organized a group of people and/or services to assist me with things I am no longer able to do. Most of the time, I have to pay someone for this help, though my friends will help when they can. I highly advise anyone living alone to identify those services you might need in a worst case scenario. When that time comes around, you are usually too ill to do any sort of research, so it is good to have the info at hand. Two other great devices are a personal alarm button, medic alert necklace, and a smart phone. Fortunately, I am able to drive but only locally. I have lost endurance for driving more than an hour. Every time I have a major relapse, I do a "lessons learned" paper. This identifies what problems I had, how it was handled (or not) with recommendations on how I can mitigate the problem should it occur.

Though I can still drive, if the time came when I could not depending on the nature of the problem I would have my auto adapted or use various transportation services for seniors and disabled. I have identified various transportation services (many of them free or minimal charge) that can get me to my destination (such as doctor appointments). The VA clinic in my area offers transportation to/from the main VA hospital in downtown Baltimore. I have only used this a few times, but nice to have it if I did not feel I could make the drive on my own. I would also have a scooter of some kind that can be used outdoors so I could do my grocery shopping...I have a store that is almost right across the street from me.

I recently discovered a website called Care.com that allows people who will perform various types of jobs. You can contact the individual and determine the cost of the service. Many services are at a low cost. Another good website is Task Rabbit. It is offered in limited areas of the country, but has a wide variety of jobs one would not usually hire someone to do. Need some research done on the Internet? This is one service available in most areas in the country.

Some things I did not mention in my earlier post are some of the assistive technologies I use. As mentioned before I use a smartphone, but texting to typing on such a small screen can be challenging. The voice recognition systems are much better than before. I purchased one for my phone for .99 cents and I am amazed at how accurate it is. Other things I use:


reachers
jar openers (the kind that comes in different sizes and fits around the lid)
sandwich board (it has spikes to hold the bread in place while making a sandwich)
small stools in various heights (to sit down when doing a chore requiring bending or stopping. You can do a surprising number of chores sitting down. I can sweep and mop my floor while sitting. Yes it is a hassle, but works if I need to do this type of chore. You can also do gardening while sitting. I use stationary stools, but also have a chair on wheels. Warning here about chairs on wheels. Often people fall out of them, so if you use one, ensure you are stable before doing anything. Very easy to slip out of a chair. I use a chair mat that gives me some traction.
zipper, button, and sock/hose helpers
shower chair
a flashlight that attaches to a body part. You have probably seen the type that miners wear; but many who do crafting also use some sort of magnifying/light fixture that fits to the body allowing hands free work.

Velcro has become my tool of choice for solving the problem of losing or dropping things. For example, I have a board in several rooms in my house that I use to velcro frequently used items. You can get very creative with this.use an inexpensive painting to velcro items to. Hang it on the wall, and you can easily spot items such as pens, letter openers, remotes, small notebooks, and so on. Magnets are great as well for finding dropped metal objects. . For those who can still use a screwdriver, I recommend one that is electrically or battery operated.

Most of my medicines are mailed to my home, and I am in the process of having the remaining one put in the same sort of system. Need to mail a package? You can call the post office to schedule a pick-up time for your package. I have not tried this yet, but glad the option is available to me.

I tend to have many accidents. Cuts, bruises, and burns. So I keep a well stocked supply of bandaids in various sizes. I also have a brace for almost every part of the body. Back, neck, hand, wrist, elbow, knee, and ankle. These help when those particular parts are weak or affected by a symptom. This, along with various walking devices. Canes, walkers (the regular type and one on wheels with a seat), and crutches. The only walking device I use frequently is the cane. I keep one in the car as well, because the day may start off with me walking ok, then my legs become weak or I get tired. Nice to have one of those canes that converts to a small stool for sitting.

A label maker is another great device. I do not remember my parents having to use such an item, but have you noticed how many cords we have now? This is especially true if you have a computer or a home entertainment center. I must use a surge protector for my computer equipment, but which cord goes to what? I make a label and tape it around the cord at both ends. I also use labels for my kitchen cabinets and to remind me of how to operate certain items.

Whew! Sorry for the rambling here, I could write this in a more succinct manner if I was rested, but it is getting long in the day.

OK, my last post. I highly recommend finding a hobby that can be enjoyed while at home. For me, that is making beaded jewelry and working on my computer. But I also do my own physical therapy stuff when not in treatment. In for those who are worried about being house bound, I can give you the benefit of my experience. Although I am not strictly housebound (I can drive), often I am not up to going many places. So being housebound is not a problem. I prefer to stay at home on those days. I bring the outside into my home. My computer offers my virtual tours of just about anything, I do brain exercises, make beaded jewelry and organize my life. Yeah, that takes a lot of time. Organizing my life so I can live it.

I hope the day that I am no longer independent never comes. My children are 32 and 33/. They have their own lives and I rarely see them. Around the holidays they will do their 'duty'. My oldest doesnt believe I have trouble. I do. I am so much slower than I used to be but I manage to do what I need to. Some days are better than others. I just had a relapse and a round of steroids. I have yet to see the famous energy boost from it. But I learned that nurses will come to my house if I ever need them. Insurance covered. I worry about falling when I go to my basement for laundry, so I always keep my phone close by. I can't afford the emergency bracelets and necklaces.

I learned who my friends are in this. and believe me I think I only have one now. Boyfriends left and my ex husband who was my best friend in the world died four years ago. I have no family here in ny other than a daughter thirty miles away that refuses to believe that I may need help. I gave up asking.

But most of all that I wanted to emphasize is that I trust that God knows what is best for me. The worry and fear can and does at times make me sicker than I am. I have to trust that He knows what my purpose is and will provide me what I need. If he wants me in a wheelchair, then I will be in one. So far He doesn't see that to be, thank goodness.

We cannot stop fighting this disease. When we give up we will be done. It gets hard to cope sometimes.

Your were problablytyping your longer entries when I first posted.

I don't want to sound too Pollyanna here. But I refuse to use a cane even though I should. I refuse to use anything that makesme stand out in public. I will stay home first. I am too afraid that I will become too dependent on many of those aids. I never want to have to use them regularly. I have had railings and grab bars added into my home since my last fall. I still have a lot of upper body strength. I love to hide behind the shopping carts when I am out and I awlays stay near a wall to touch for balance when I can.

My doctor tells me that my stubborn streak is a good thing in this way.

Hi

I'm also stubborn thats why I'm still walking, with a walker but walking. I told my family that when I'm fully dependant to PLEASE place me somewhere, not to die but to have professionals deal with everything, my meds, dr appts, hygiene, social life, pt. I've seen what happens to caretakers and don't want that for my kids.

Since my wellbeing worries me, the best I can do is put whats left of me in expert hands.they can visit and bring chocolates for me and the staff once a week, if they can't come then send chocolates by messenger,,,

Alma

Bobby, Jose is much cheaper, but there is a reason for that. lol Patron is soooo smooth and yummy. (((hugs)))

Hello,

I just figured I would mention to "leah214" after she said she would move to Maine in the future and have a cane to help her.

I am VERY sorry, but that plan would only help a VERY RICH person up here in the snow piles when MSers STILL ARE TOO HOT to do anything!! Where the roads are too bumpy to ride/ drive any vehicical relatively comfortably the hour (If you are lucky) or 3 hours it takes to get to the Dr.s office for anything.

I know I sound like I hate my state; there's ALOT of times I do, it's just that I have to say this, Maine is NOT for people who have disabilities. There is not enough funding for anything here, hardly any public transit besides taxis, everything is too far away; so imagine the 80$ taxi cab ride out to the Dr.and have him say "oh I'm not sure yet what that is...Come back in 2 weeks", there isn't anything up here besides the animals, broken down houses, more wild animals and irritated children who wish to move outta state.

It's sooooooo depressing here, it's why wealthier individuals have a camp here instead of living up here year round.
Maine is not for MS!

Of course this was in 1986 when I was dxd, but I met with a lawyer to find out about my legal issues of having MS. In his words .... and your wife is going to leave you and take everything youve got." My brother and I are walking to the car and says "you know, he is probably right".
That was probably the lowest point in my life, even lower than being dxd with this wonderful disease.

26 years later, we just celebrated our 28th wedding anniversary. Go figure, he was wrong.