I also have MS and gardening is a passion of mine. We are have high temp and humidity this week so not much gardening for me. I do all the things you do with drinks, work in the mornings and early evenings. Can't do the all day thing anymore. I have started to use a cooling scarf around my neck which helps a lot. Loved the pictures of that you've shown. My gardens have gotten out of control so I'm having to hire a landscaper to come in and help. Hopefully that will get me back on track to keep it under control again.
I live in northern Illinois so have cold and hot weather. I wish it was 70 and windy year round.
Nancy
Looking for suggestions for gardening with MS
Welcome Nancy, My very first response is, What is a cooling scarf? Sounds like something i need in the worst way.LOL
I've heard of the hot Illinois summers.
My garden has gotten out of controll too,and will probably stay that way. I've rescued most things and put in large flowerpots.
Do you have a favorite flower or just love anything you can get your hands on?
Vickie
Nancy, is that one of the "personal cooling units" I've seen from the MSAA site? They look interesting and I wasn't sure they would work. One of the tricks my warehouse staff uses in a Texas summer is to wet a towel, roll it in tube shape, then freeze it. The towel goes in stretch wrap and, voila! Don't know how well the towel would work outside when digging and bending and such. Think it'd fall off, but might try it this year. :-) Can't do more than about two hours at a time, myself, usually. Just happened to feel strong and rested this last weekend. I'm originally from South Bend--understand what you mean by hot and humid.
Glad you like the pictures because I am addicted to taking them and sending them to anyone who will sit still long enough to look. LOL
Hi Vickie! One of the red daylilies waiting in the container is budding. Yea!!
Debra
Welcome Nancy! All right, our own little MS support group!
Vickie, people w/ MS worsen dramatically with the heat, so much so that 1) MS used to be diagnosed by putting the individual in a hot bath, and if that brought on symptoms, MS was diagnosed (long before neurons or MRIs or spinal fluid were invented) and 2) as a result, there is a whole cottage industry selling cooling scarves, vests, jackets, hats, etc. I personally get really stupid when it gets too hot, but otherwise most of the time I'm too cold. My internal thermostat has MS.
If you want to buy one of those types of products for real, just go to google and type in "MS scarf" - I'll bet that would have results. They are always advertised in MS magazines.
Carrie,did'nt know about the heat factor. Hope someone is doing research as to why.I know there are so many unknowns about MS.
Thanks for info. Heat don't do a lot for CHF either.
I know i'm the useless info queen. LOL I read that if you can cool your neck and forehead,the rest of the body cools off too.
Hmmm - that is probably useFUL info, hon!
Vickie, head, neck, feet, hands, inside the elbows. Cool them and all of you feels better. :-)
Debra
Sounds good to me!
Welcome to the Accessible Forum, Nancy. I'm Jim. I have degenerative disk disease not MS, but I am always looking for ways to stay cooler while working in the garden. I am not adjusting to a hot, humid climate well.
Debra, I’ll have to take that towel trick and see if I can streamline and re-engineer it somehow to make it more useful when you are moving around a lot. As is, it might be worth trying when I’m mowing. It was in the mid to upper 80’s today. That isn’t too bad for this area. When it gets up in the 90’s, mowing really gets to me. If only someone would develop a type of grass that would stay green, but stop actively growing when the temps hit 90. Did I mention this grass should be tolerant of drought and also be disease and insect resistant? Nope, I don’t ask for much. lol. BTW, Kay works concrete. She is playing around with your label idea. I’ll put a pic on when she is happy with the results. The sighted here have picked up enough Grade I Braille so we can use the labels the VI’s make for themselves. It is only really a problem for visitors. I sort of like the Braille labels on clear label tape attached to pieces of clear plastic rescued from the garbage. In a way it does solve the knowing a plant’s name instantly vs. cluttering things up with labels problem since the labels are hardly noticeable. But, I guess we can’t expect everyone to learn Braille. lol.
Vickie, if the mountains are high enough to offer relief from the lowland heat, they are “real mountains.” Mt. Washington definitely qualifies. I would like to get Kay to the Rockies though. She is somewhat afraid of heights. We will consider it therapy. Besides, she is a big fan of John Denver. I don’t think anyone can fully appreciate that music until they have experienced the Rockies. I didn’t meet the coon cat, but the park staff had Kay going with their ‘bujjer’. It seems to be VT’s version of Bigfoot. She wouldn’t walk from our camp to the car by herself. This lady could find the car in the dark better than I could. The park staff there is really good at weaving tall tales. lol. (Jim)
Jim, You might check High Country Gardens, they have a lot of different grasses.
Jim, I've wanted to try Zoysia grass but would have to get someone to dig up this nasty St Augustine or whatever it is that's so prevalent here and that I HATE!!!! It's like the mutant grass from Plant Tick'emOff by invading the garden!! LOL
Debra
Kay is a John Denver fan?!!!! I love his voice. I love his songs.I love his spirit. I know we were soul mates.I have all his songs. Only trouble is they are on cassette tapes and beginning to wear thin.He did NOT commit suicide. I don't care what anyone says.He had been having engine problems with that plane, errr so i read. Did you hear his very last song Calypso?
Maybe i'm lucky not to have grass. Keep avoiding pulling up weeds too as they just might turn into a flower. Well except a few out of my containers.
Debra, What a good movie title "The Mutant Grass From
Plant Tick-em-Off."
Thanks for the Bujjer name. I can use it on the chocolate basil thread. Whats his description?
Vickie
A cool scarf is a strip of cotton woven fabric that has been filled nontoxic polyacrylamide granules (crystals) concealed in the casing of the scarf. When the scarf is soaked in water for 15-30 minutes, the granules absorb the water, expand 400 times, and turn into a crystalline gel. The cotton fabric absorbs water from the gel, and then the water evaporates for a cooling effect. Scarves stay cool and moist for hours due to the polyacrylamide's water-retaining properties. When the scarves are allowed to dry, the gel returns to crystal form.
Thanks for the welcome everyone. Above is what the scarfs are made out of. I bought 2 when on a cruise with my sisters and mom.
I think you could make your own if you wanted to.
When I first was told I had MS I was sent one for free. That was during my I can still do everything I use to do stage. I gave it to my son who is a roofer to use. Who knows where it went. I don't have a cooling vest, don't know if I'd like it seems it would be to heavy.
I remember that stage. :-) First was hit with the carpal tunnel syndrome. Whadda mean, I can't use my hands like that anymore. Then the MS. Whadda mean I can't be outside from June to October...and on and on. The most difficult adjustment was turning around the "I can't" to remembering the "I can"...
Don't know anyone who has used the vest. Seemed foolish to me to spend the money if there was no information on functionality. They do look bulky. And I am not a small woman to begin with. Adding what amounts to a flak jacket wouldn't do much for my silhouette. LOL
Debra
I wonder what happened to Nancy?
Nancy, Belvidere is almost as warm as Dallas today. How we ended up with higher humidity than you today, I dunno. We have already started getting Air Pollution watches. Hope that isn't an indicator of the kind of summer we will get.
I know this would look funny, but I've been thinking of trying one of those umbrella hats. It gives shade, but because only the band sits on your head, it let's air flow and isn't so hot. Only problem I can see is if it won't stay on your head because of sweat? :-) In my case, there would certainly be no problem from the "Sally Field" effect. LOL
Debra
Uh-oh, wrong noxious weed. Let’s try that again. (Jim)
This message was edited May 31, 2010 2:14 PM
That's better. Now I'm the proper noxious weed. lol.
A long time ago, in some novelty catalog, I saw hats for sale that had a built in holder for “a cool one” with a straw coming down to rest beside your mouth so all you had to do was turn your head a little to take a sip. (I actually wonder if that novelty hat is where the military got the idea for the “camel back canteens” they made us wear in the Saudi desert.) Go for it, Debra! The worst that can happen is you will make some people smile and, perhaps, get a reputation as one of those “hat ladies.” Kay is one of those and I can’t see that it has done her any harm. Be warned, though. Once you get a reputation as a hat lady, people start giving you unusual hats. We had to start hanging Kay’s collection of hats on the walls like home decor to find enough room for them. We will have to see if we can find you one of those “coastal cowboy” hats people wear around here. Typical cowboy style but made of straw using a very open weave and usually decorated with something nautical. Much cooler than the traditional western hat. They are the traditional cattlemen’s hat in this area. Many people are unaware that raising beef cattle is a major industry in the coastal plains of N. Florida and S. Alabama. It ranks right up there with Texas.
A very rainy Memorial Day here. There will not be any BBQing going on today. A fairly cool 81 at the moment, but we will pay for it when the sun comes out. When that happens, I always wish I could trade in my lungs for gills. :-) (Jim)
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Sorry I haven't been here for several days. I got and ear infection and got medicine that made me to sick to do anything. I ended up in the er and got meds. Finally feeling better today.
I have no idea what the weather was from Friday to today. I'm going to the ENT this afternoon hoping to get better so I can continue with life.
Nancy
Nancy, Ouchie!! Hope it goes away soon. Pop on when ready.
Debra
Nancy, GET BETTER! please.
((((HUGS Nancy)))) Please get better quick!
Tooth aches and ear aches have to be the worst. Get well soon. (Jim)
Debra, I was just reading your opening post. You choose to garden, you DIDN'T choose the MS. And don't you hate the way they always say "your MS?" Hey, I don't want it, you can have it back, Sorry to interrupt this thread -- yes, mouth pain can be awful and ear aches are consuming!
Toothaches are the pits.
Carrie, How about "your depression?" I've heard that too.
Right! Please, I don't want it, "you" can have it back!
LOL!!
When I was a member of the NFB (National Federation of the Blind) we discussed the semantics of blindness a lot, but I don't think we ever touched on the way blindness is personalized. You can't claim verbal expediency on that one. I mean, "blind' is just easier than "visually challenged". But, a question like : "Doesn't your blindness keep you from doing that?" would be "Doesn't blindness keep you from doing that?"
Yesterday, I saw (Okay, Jim saw and described it to me. LOL..) a funny 'stay coo'l method. Several teenage girls were evidently walking to the store. They all had rolled bandanas around their necks. When they stopped at a park bench to rest, they removed their bandanas, unrolled them, took out ice pops and started eating them. Those long, skinny ones in the sealed plastic bags that are basically frozen Kool-Aid. Kay*
Yeah, we always get "your MS." Always. I wonder why, since it's evidently not just local, either!
Carrie, yeah, we'd all love to give "it" back to "them" then "they" can have the same fun with "it" as we do. LOL
Kay, that is funny. Might try that. Use a Popsicle? You betcha!
Debra
Kay, Is it a form of prejudice to say blind rather than VI? The term VI did'nt come along till i was grown. deaf and blind are to me just words,facts.I was always told other senses made up for the lacking sense. My sense of smell is sadly lacking and always has been.
The question "Does blindness keep you from doing that?" Could also be Does blindness cause your hearing to be more acute? Which would put you on the same level as me. Am i making sense? Like i can see red autumn leaves. But i beleive you are more attuned to a leaf landing on the ground more than i ever could. Equal pleasure.
BTW Parts of The New Testiment was written in Aramaic, which has no words for colors.
I have done nothing today.Well straightened up one shelf in computer room.
Will see psych. doctor tomorrow.
Vickie
Most of the Bible was written in languages other than Latin, ie languages which don't translate easily to ours. The old testament was written without VOWELS!
Cn y mgn trnsltng wth nly cnsnnts t g by? LL
Can you imagine translating with only consonants to go by? LOL
What I don't like is when people say " Well you look good" or "Can't believe you look so good". They don't understand what it is and have no idea what they are saying. I always tell them I am doing fine since I don't want to explain that what they see on the outside isn't what is going on in the inside. I even had a sister who thought I was faking it. I don't think any of us would fake the problems we have.
Nancy
Nancy, there is a support group at the New England chapter of the MS Society called "But You Look So Well!" For newly diagnosed, though, not crips like me. At one of DH's (endless) court appearances w/ his ex-wife, she accused me of actually being able to walk! Like I've been scamming all my MDs and the government (for SSDI) and her (I'm not sure how she played into it). I just realized - that's the kind of thing she would do herself, scam people, so why not believe it of others?
The idiots who think we are 'faking' it would be incensed if the situation was reversed, THEY were the ones in our place, and we even _implied_ their condition wasn't real or was a figment of their imagination or they were hypochondriacs or they could just will their way through it. To those who say, "Well, you don't look sick." I have sometimes been tempted to respond, "Well, you don't look ignorant, either, but you know what they say about looks." Only I remember I'm supposed to be at least civil in public (Grandma's voice is still loud in my ears), make some meaningless comment and go away. Even people who have known you and care about you are thoughtless. Been working for my boss seven years next month. He is my friend, too, and still has never understood what it means to have MS. If I lay down in my office at lunch instead of going out or rest for 20 minutes mid-afternoon, he gets almost petulant. BUT, now I have a diabetes diagnosis, he is all concerned and what can we do, etc. If it didn't sting so much, it would be funny.
For real!!! :(
When you've been hospitalized for severe depression and a relative says "Just smile and cheer up." Is like rubbing salt into the wound too. Sometimes after that i feel guilty even. Why is'nt there a sign on my forehead saying"This body is hurting!"
Thats why i love my fur babies so much. They know when you are down or hurting and they care. Even my DD,s dogs know when i'm hurting ad act accordingly.
I think it boils down to the facts that MS is a complex condition with highly variable symptoms, and most people are rather simple minded. :-) Sorry, no restraints. My Granny was razor tongued herself. LOL.
This may be cold comfort, but just about everyone I know who has complicated medical conditions at the root of their limitations has experienced that “I think you are faking this” or “I don't think it is as bad as you are making it out to be" nonsense.
It should be obvious to anyone who CAN see, that I can’t see. My eyes are filmed over by mature cataracts. (No reason to remove the cataracts since the major problem is with retina degeneration.) I move like a blind person. Slow and cautious. Often feeling my way along. But, people do not necessarily understand what they see. Even, I have experienced that nonsense.
I think it is primarily because of the complicated nature of my visual loss. There is no way to describe my type of vision loss in 10 words or less and we are living in a world of “sound bites”, instead of real information exchange. An accurate description of what I can see would take too long and contain too many ‘but’s, ‘ifs’ and ‘it depends’ for most people. If the information package is too large for people to wrap their little minds around or if they consider the effort required too hard or time consuming, it must not be true. LOL.
Vickie, “blind” has never bothered me. I think you should use the word or phrase that is most accurate. Since I have to function as a totally blind person (Use Braille, the white cane, a sighted guide, etc.) “blind” is most accurate in my case. The only one that can make me flinch a little is “handicapped.” That is just because someone told me the history of the word. I try not to get upset when it is used because the word's history has been forgotten. It is only a word to refer to people with physical limitations in most people's minds. Or, race horses. Or, golf scores. :-) Why take offense where none was meant. I was told the word came to be when the majority of people with physical limitations were beggars. Their caps were always handy to accept money.
That fact about Aramaic is interesting. That could explain why physical descriptions are so lacking in ancient text. Kay*
Kay, you are right. I think that we each can get so turned inward in dealing with our conditions that we sometimes forget we aren't alone in the reactions received. Thanks. :-)
I did not know the history of the word handicapped, I only know I've never liked it--except in horse racing. :-) Once when making a training presentation to a class of college level tutors, I tried to explain my concept of the difference between disabled and handicapped. One person there simply could not or would not grasp the difference in what I was saying. That a disability comes from within. It happens TO you. A handicap comes from without and is imposed ON you. Not grasping the difference means a tutor's (or teacher's) perception of differently-abled kids can negatively influence how he or she works with them, and how the student will respond to the teaching based. So, to be positively effective, it is important to understand which perception you yourself have. Even the other tutors were shaking their heads at her nearly obnoxious persistence in asking the same question again and again no matter how many ways I tried to answer it. HER simple-mindedness did reinforce the message for everyone else in class, though. LOL
Debra
Don't get me started on THIS topic. I do not think that "handicapped" came from disabled people begging with their caps in their hands - I think that's a myth. Look it up on dictionary.com - I will in a minute. I think it came from the racehorses and golf score thing. But still; we're not a category, we're individuals! We're not The Disabled,The Handicapped, The Needy, The Patients, whatever, we're PEOPLE. We may be People with Disabilities, People with Illnesses, People who use Wheelchairs or Canes or Whatever. we're People for crying out loud!