Advice

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Advice

Postby patientx » Sat Feb 21, 2009 10:18 am

Many here have dealt with MS a lot longer than I have, so I'd figure I solicit some advice on something I've been considering.

Just a little background: I'm 38 years old, and was diagnosed last August, and started having symptoms that lead me to the doctor last mid-April. I started on Copaxone in October. My symptoms have been mostly sensory, some nerve pain, but I do feel my legs and arms get tired more easily. Like most here, I was pretty active before diagnosis, running, biking , etc. and was never afraid of hard physical work (though my job has me sitting at a desk pretty much all day). I haven't done too much exercise since diagnosis - not that any disability is holding me back, more out of laziness.

Anyway, before I started being worked-up for MS, I had some plans, that have since been called into question. One was buying a house. I currently live in a small apartment by myself (no wife, significant other, or roommate). I'm not looking at getting a mansion, just a medium-sized single family home. I can swing it financially, so that's not a problem. Unless, I had to stop working. I fear that in the near future I might have problems keeping up a house by myself. My brother and sister live nearby, and they would probably be more than willing helping with things like yard work, etc., but it's not the same as having someone living there.

Any thoughts? Thanks.
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Postby Loobie » Sat Feb 21, 2009 10:27 am

Hope for the best, but prepare for the worst. That's not by any stretch saying "don't make any moves because they may come back to bite you", because even people without MS have that. Only you know how bad this would strap you in case something happens. Just living by that mantra hasn't stopped me, but really made me think out more thoroughly about my decisions and put lots of them I would have made with my heart years ago, back into my head.
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Postby mrhodes40 » Sat Feb 21, 2009 12:05 pm

Hi PX,
You are right to think about yard care; that is a problem for me and I have a husband but it was always my job so it is---different---the way he does it. I'm picky, he's not. In my family, we do have extended ties and they are willing to take turns and come help, but that doesn't make me feel to great making work for them.

if I was alone I'd think seriously about a really nice condo where all that stuff is taken care of. Our town also has a neighborhood with stand alone houses that still have contiguous yards that are maintained by the organization rather than you. They are $$$$ though. But one less worry and a lot less time. I think then you could be in for rising maintenance fees so that would be something to consider as well.

One thing that I noticed is that I got slower and slower at getting chores done as MS progressed a little at a time so that something that I did in an hour eventually became an all day job. I was just tired and worn out before the task was done, and that long before I "looked bad" functionally. Sounds like you are noticing that slow down too.

That having been said, prepare for the worst and hope for the best is good advice. Also recognize that your MS pattern will show itself in the next couple of years and you'll learn what kind of ride it will be. I've had MS for 18 years, I was really fine for many years and I wish now my current self could go back in time and tell my newly diagnosed self to relax, cause I worried way too much. :wink:

BTW we've owned and sold 5 houses in that time, I was living in house one when dx'd. I'd do it the same, but this house we just finished is accessible and our long term house, and I am grateful. Every decision is made with the idea of ease in mind: landscaping, decks etc.

Now, if only the economy would let us sell the last one.......... :?
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To patientx

Postby lyndacarol » Sat Feb 21, 2009 1:11 pm

patientx--Loobie has good advice: "Hope for the best, but prepare for the worst." However, first you must assess your own abilities and desires. If you have alway wanted a house and yard, by all means, go for it-- get one. Maybe it should be a ranch-style home, not two- or three-stories tall; maybe on a 1/4 acre lot, not on 5 acres. There are ways to deal with most difficulties, especially with helpful friends and family nearby.

And there is always the possibility that your MS will not progress. And there is my strong feeling that answers for MS will come soon.

Besides, this is a great time to be buying a house; there are many on the market to choose from. If you need something else later, a house can be sold, if necessary. What an exciting time in your life now!
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Postby dignan » Sat Feb 21, 2009 3:23 pm

patientx, I have some things in common: 38 years old, male, single. I own a house (the bank really owns it I guess). A girlfriend and I bought a house together after I was diagnosed. Then when we split up, I bought a house of my own. That was when I was already 3-4 years post-diagnosis and I was doing well physically.

I agree with what Loobie, mrhodes and lyndacarol said. I think part of it depends at where you're at with the disease. For you, since you've only been experiencing symptoms for less than a year, it's hard to know how aggressive your MS will be.

My main quibble is with buying a house right now isn't MS-related, it's price-related! I think lyndacarol could be right about it being a good time to buy in certain areas, but I think in much of the world, real estate prices are going to continue to fall through a good chunk of 2009.

interesting housing market research
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Re: Advice

Postby NHE » Sat Feb 21, 2009 4:11 pm

On a different topic...
patientx wrote: I haven't done too much exercise since diagnosis - not that any disability is holding me back, more out of laziness.

It's been 9.5 years since my diagnosis and about 17.5 years since my first symptoms. In that time I've come to the opinion that MS is like trying to go up a down escalator. If you stand still, you go down. If you do normal activity, i.e., trying to walk up, you might stay in the same place. However, I believe that it takes extra effort in order to improve, you need to run up that down escalator in order to get up to that next floor. Once the down escalator makes itself apparent, it becomes harder to maintain a level of physical activity. This is like a vicious circle. In effect, MS makes it harder to do things, therefore you do less, as a result it's even more difficult to do things. My advice, start a regular exercise program now while your on the stairs before they become the down escalator.

NHE
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Postby Lyon » Sat Feb 21, 2009 4:44 pm

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Postby Loobie » Sun Feb 22, 2009 7:55 am

I will tell you from the mouth of a former exercise addict. It gets hard. When I used to get up in the morning I would think about when I was getting off work so I could play racquetball. of go on a bike ride, or even just work out. Now I just dread it, and that does play into it all, but you simply have to push past it. If you are being lazy early on before you're really affected, it's going to get really tough if you have progression.

NHE's escalator analogy is very spot on. I've been doing some light exercises lightly since Tysabri has been allowing me. But after 1 1/2 yrs. of unabated progression, it is very hard. So I do 80 deep knee bends and 80 push ups off the counter with my feet back. Doesn't sound so grueling, but the whole time I'm thinking I have to do more because I'm only treading water, but that's all I could do yesterday. You almost have to make yourself feel ill for you to gain anything from it. Now that's my opinion, and that's where I'm personally at right now. For the first five years, exercise really pumped me up and energized me. Now I do it and I literally feel ill most of the time. But the next day is when you'll notice a little bit. Just remember, a sore muscle is a good muscle because it's been worked. In my opinion, if you have MS and are capable of exercising, and choosing not to, you are asking for it.

Those aching legs, hurting feet and useless knees actually feel better today just from the deep knee bends. I was almost resigned to the fact that I couldn't make my legs feel better since I couldn't run or ride a bike anymore. Find what you CAN do and do it regimentally, you won't regret it.
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Postby Lyon » Sun Feb 22, 2009 9:14 am

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Postby Loobie » Sun Feb 22, 2009 10:28 am

Bob,

You CAN do it. After about 2 weeks of forcing yourself, you will look back and say "Damn!" because it will be a habit. Get off your butt!! :lol: . I know you can do it because you understand more than the average bear what's happening as you lose cardio and gain weight. The time is now for all of us! I've got a call in to my neuro. to write me a PT scrip. so I can hook up with an physical therapist from what Chris Young was talking about in another thread. I just don't know how to exercise "non hard core" for any length of time and I want someone to show me what I can do with my limitations. Whatever factor you think is going to motivate you, find it and use it. Whether it's for Jamie, your boy, or just so you can keep convincing the world that we got too clean!! The thing I miss the most is not the act of exercising, it's the way I felt all the time. I really felt good 99% of the time; even for the first few years of my MS. We can't have our bug guy blimping out on us! :wink:
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Postby patientx » Sun Feb 22, 2009 1:26 pm

Thanks, everyone. I've gotten some good responses.

Marie:

I have to agree with what your wrote. I actually enjoy yardwork, and I would hate having to call someone over to do things for me. But I guess that's one of the things I might have to accept in the future.

Lyndacarol:

That's pretty much along the lines I've been thinking. Single-story house, not too big of a yard. And one of the reasons I bring this up now is because the real estate market has cooled so much, and there are deals to be had. A buyer's market, I suppose. I tried buying a few years ago, when things were booming, and kept getting out-bid.



I think one of the reasons for my concern is that I haven't had MS (or at least seen the effects) for that long yet, so I'm still unsure how this will progress. I haven't gotten a feel yet for what is "bad." But maybe that's a hint: I should take the plunge while my MS progression isn't that bad yet.

On the subject of exercise. Some of my lack of exercise might be laziness, but I also think since diagnosis that I see myself as "sick," and therefore shouldn't be pushing myself, working out. And I think I was somewhat afraid to see how much endurance/strength I might be losing. But I'm going to start again this week. If nothing else, it's probably a good idea to see exactly how much the MS has affected me physically.

Thanks again, everyone.
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Postby Loobie » Mon Feb 23, 2009 9:49 am

Well I just got my Rx for PT from my neuro.! Now I can see what "hard" cardio does to me. This new insurance has me wanting to dance. Old insurance: $420/mth for Tysabri, $50 for them to put it into me, no "health aids" covered (caths, PT, etc). New insurance: $0 for Tysabri, $0 for administering, caths and PT, 100% covered! This is like getting a part time job! I'll report back on how the exercise is going. I've fallen so far out of shape that I have no idea how this is going to go.

X, yardwork is where I first started noticing my diminished capacity. I mean I was still running for God's sake! However, all the twisting and turning and keeping straight really made it show up. Now luckily my daughter is old enough to mow, so I just offer moral support while I'm up on the deck sunbathing! Seriously though, I miss the hell out of yardwork. I used to spend a great deal of time tending to my property. We live in an old neighborhood; lots of trees, creek through the yard and all that and I loved getting my hands dirty and working on it on a nice day. I hope it all works out for you, but I agree with others not to take on a "fixer upper", or a yard that requires beaucoup maintenance.
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Postby patientx » Tue Feb 24, 2009 5:17 am

Thanks, Lew. You make some good points.


By the way, that's great about the new insurance. It sounds like it will be a big help.
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Postby Lyon » Tue Feb 24, 2009 7:53 am

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Advice

Postby skydog » Wed Feb 25, 2009 3:32 pm

Keep on keeping on. Slow down a little but do not stop !!! Even when I have to crawl back into the shade to rest no harm seems to come. A day spent doing nothing brings a harder climb tomorrow. Enjoy the company you have that will come to help... MW
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