Summer Misery

It's been a long time since I've actually enjoyed summer, but each year I feel more miserable and housebound when the temperatures rise. Not much difference between winter and summer in that respect.

I was reading my issue of Momentum today, and an article about coping with summer heat said that 4-AP "may improve" heat-related symptoms. I wondered if anyone here who is taking Ampyra can speak to that? My neuro mentioned the drug at my last visit, but I didn't feel I needed it and didn't want to deal with the side effects of a new drug (not to mention the inevitable disappointment). But it might be worth a try if I could spend just a little time outdoors in the summer.

[ru4cats]

I've been on Ampyra for four years, and I've never found it helped with heat. In fact, we put in air conditioning 18 months ago, and now my summers are wonderful as long as I stay inside.

[misslux]

Been on 4-AP for over a year and has not helped with that either. In fact, my temperature tolerance to hot and cold is worse (not because of it, but certainly not better).

[dyin_myelin]

Not sure if I could post the link so google if interested: Consumerist blogsite found that windowless AC units performed poorly and actually sometimes raise the temperatures in the room. I was skeptical because I know window units work as reverse heat pumps, but was tempted with the lack of labor involved.

[KitOP]

Not sure if I could post the link so google if interested: Consumerist blogsite found that windowless AC units performed poorly and actually sometimes raise the temperatures in the room. I was skeptical because I know window units work as reverse heat pumps, but was tempted with the lack of labor involved.

We've used what you are calling windowless a/c units, ones that sit on the floor and vent out the window, for 3 summers now. They most certainly work well and does the trick for us.

We actually bought a 2nd one for upstairs this year.

And for those looking for relief from the heat, look into the wide variety of cooling products on the market now.

MSAA has a free cooling vest program. If a vest is not for you, there are wrist wraps, ankle wraps, lumbar coolers, seat cushions. Something for everyone.

[misslux]

I have a portable A/C unit too that vents out the window and it works great.

It doesn't look like Ampyra would help much, then--I was suspicious because it said "MAY help" in the article.

We've had central air-conditioning since shortly after I was diagnosed in 82, and I don't know how I'd have survived without it. I don't sweat, and our humid summers in the Northeast are miserable for me. I guess I'll just have to resign myself to only playing outdoors in the spring and fall--or move to Alaska!

[palmtree]

SUmmer=SUffering. I wish there was a pill to make it go away.

[Thinkimjob]

Either, or. Hot, cold, both abysmal.

The longer this sucker goes on, the narrower the gap. It's now a bit warm or slightly chilly. Both suck.
Cold stiff as a plank; hot staggery beyond salvation.

I think the worst part is that other people just don't get it. Period. I come from a family full of sun lovers, and I swear they think I'm lying when I say I can't be outside, can't garden, etc. Yes, I'm doing this to get attention!

A very old, dear friend visited me last June. I made a huge effort and went with her to the amusement park where we'd hung out in our youth. The manager gave us a tour, and I thought that park would be the last thing I'd ever see. When she wanted to walk around one more time, and I couldn't get up from the bench where I'd collapsed, she actually became confrontational. I waited for her in the shade when I should have immediately gotten into the air-conditioned car, and then had to ask her to drive us home.

I don't think either of us has felt the same about the other since then.

[laurasari]

I was given Ampyrsa for walking. for me no help in heat intolerance. I personally had no side effects from Ampyra. Good luck
Laurie

[palmtree]

Betsi, that is so sad about your experience with your friend. This is such a cruel disease but I wish there was more awareness. Going to an amusement park in the daytime is something I gave up 20 years before my dx. A guy at my church said it was psychological. Now I know why I couldn't go out like that.

Palmtree, I think we've all had many experiences with people who thought our issues were "psychological." And that didn't end with diagnosis, either. I've even thought myself at times that things might be "all in my head," especially after getting that blank look from doctors when describing weird symptoms.

[Cat Mom]

A very old, dear friend visited me last June. I made a huge effort and went with her to the amusement park where we'd hung out in our youth. The manager gave us a tour, and I thought that park would be the last thing I'd ever see. When she wanted to walk around one more time, and I couldn't get up from the bench where I'd collapsed, she actually became confrontational. I waited for her in the shade when I should have immediately gotten into the air-conditioned car, and then had to ask her to drive us home.

I don't think either of us has felt the same about the other since then.

Ouch!! Sadly, I think there's a commonality with almost all of us. My few were quick to show their true colours, thank God.

Jen

[rdmc]

Here in Florida, most homes have central air conditioning. We also have a pool, but that wouldn't help me escape from the heat, because even though it's screened in, the pool water is very warm. We've been having most days in the high 80's for quite awhile now.

Dr. appts. work out because I have someone drive me and I go from AC'd house, to AC'd car to AC'd office. The heat makes me so weak I literally cannot walk and it also brings on a panicky feeling, I'm not sure whether that's just a psychological issue or a true physiological reaction to the heat. What I do appreciate is once I cool off, my symptoms resolve rather quickly.

So we keep a back up window air conditioner stored along with a generator just in case the power goes out, which can happen often due to summer storms or hurricanes. We cool one room and with the window AC, and I stay in that room when our power is out.

I wanted to post this video from youtube that shows how to make a portable homemade air conditioner. Looks like a "cool", pun intended, alternative. I'll post the link, but if we aren't allowed to post youtube links, just go to youtube and look up Homemade Air Conditioner, and your search will bring up a link to the video.

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