DMP: Shelley is here. She is excited to be joining you. I am on the phone with her
petsrus6: heyy di ltns
amsm: I'm sorry (it's been a LONG time since I've been to a chatrooom), but does anyone know what exactly we're discussing tonight?
Veronica: ah ok wb shelley
drado: I am new
Veronica: I am happy to welcome Shelley Peterman Schwarz tonight. Shelley is an award-winning writer and the author of 7 books, most recently, the 2nd edition of Multiple Sclerosis: 300 Tips for Making Life Easier, which just came out in January 2006, and Memory Tips for Making Life Easier, which came out in February 2006.
jay926: I am new also
 Veronica: This is Shelley's first experience leading an online chat. She hopes that tonight validates the challenges of living with MS and provides you with valuable information that you can use to regain the control that MS has taken away.
Veronica: Acting as Shelley's scribe tonight will be Reina Santana of Demos Medical Publishing, the publisher of Shelley's MS Tips book. Reina is on the telephone with Shelley and will be typing Shelley's responses. The responses you receive from "Reina" will actually be from Shelley.
Veronica: welcom bethkg good to see you made it
DMP: Hi, this is Reina my screen name is DMP
Veronica: i thought i would start by asking shelley what kind of wheelchair does she prefer for indoors and outdoors..which would get around well in both situations?
DMP: I have used a scooter for 25 years and i like it because it doesn't put people off. It's cute. To me an electric wheelchair looked too imposing and "sick."
Veronica: i can certainly understand that
Veronica: do your recomend any particular type of scooter? 3 wheels vs 4?
DMP: My scooter is an Amigo brand (friendly wheel-chair) and i like it because i can easily use it in my house. It is also easy for women to take apart and lift into their trunks of their cars.
Veronica: does the seat raise up and down so you can reach up higher as in getting to your cabinets in your kitchen?
Veronica: or do you have special tools for reaching?
 bethkg: i use an amigo also, shelley. it is the larger one that does not come apart
 DMP: It is however, not good in snow or gravel. So if you need a scooter for going to soccer games or out in the yard you probably would need a different type of scooter. Something that is made for outdoor use.
bethkg: but i rearrange walls and doorways in my house!
Veronica: lol bethkg
DMP: I have had one Amigo that had a power seat that went up and down, but i found that it made the scooter heavier and more cumbersome and more difficult for people to transport.
MaryAnn: Hello and please excuse me for being late
bethkg: good ? v
DMP: There are many kinds of reachers. Some work like scissors some are like thongs and some have magnets on the end and are operated like a pistol.
Veronica: now magnetic ends is a good idea
DMP: You can find these at home health stores. Sometimes connected with your hospital or clinic.
Veronica: i would hate to reach for a can and have it fall on my head lol
 DMP: In fact, there are literally thousands of devices to help you do "acts of daily living" (feeding, dressing, grooming, preparing food, drinking, bathing).
 DMP: Search the internet for "activities of daily living." That is what they are called in the health care industry.
Veronica: good idea
Veronica: i would have never thought to use that term for a search
DMP: To Bethkg: I think it would be difficult to have a scooter or wheelchair that isn't easily transportable. Has it ever been a problem for you?
DiannaDibble: I can't find information on weight of scooters and how much the heaviest part weighs when it is taken apart. Do you have a reference for this?
 bethkg: to dmp. we have an accessible van
DMP: My hand aren't strong enough to use a typical reacher or to be able to grasp something strongly enough to move it. I use kind of a back scratcher device. For example, to reach the remote control or magazines or something that is out of my reach.
bethkg: i am here!
Veronica: yes i think you have to be able to squeeze those reachers to grab what your reaching for..that can be a problem
petsrus6: i'm curious, what made you decide to write books
DMP: DiannaDibble: I think it is absolutely imperative that people try any kind of device especially a scooter or wheelchair before they buy it. These home health stores, located in many communities, often have show rooms where you can try the different devices. These stores also have spec sheets or promotional brochures that specify the dimensions, weight, etc. Also you can find alot of information on the web.
DMP: I would be extremely leery of the scooter store or ads that try to sell you something without trying it.
Veronica: Yes when i test rode a rascal they had spec. sheets on it and it included the weight of the parts
SHERRY_G.: I WAS GIVEN A REACHER (24 IN.) WITH RUBBER ENDS. I USE IT FOR ABSOLUTELY EVERYTHING. WHAT A GODSEND!!
Saphira: Some local medical supply places will rent scooters by the month.
Veronica: i never knew that!
Veronica: there have been times when i wish i had one on a temp basis
Veronica: sure would have come in handle during a relapse
MaryAnn: Yes because they are available also for when some one has one in for repairs
Veronica: i rented a scooter for a trip to disney
Veronica: let me tell you it was fabulous!
bethkg: we have places that rent them by the week.
Veronica: not the brand but the fact that i had my days last longer
DMP: to Petsrus6: I wrote the book because when i was diagnosed with MS 27 years ago my children were 5 and 3 and i was working as a teacher and i needed ways to do all of the things i was doing before and i needed to develop shortcuts and energy saving solutions. I started writting down the things i was doing and began watching and recording how other people were streamlining their activities. One thing led to another and eventually it became a book.
Veronica: it always amazes me what brought us to where we are today
petsrus6: it is wonderful you made a vital contribution with your writing
mjvoigts: Any tips for people who have difficulty with buttons due to weak "pinchers" in their fingers?
mjvoigts: Button hooks are hard to find.
petsrus6: i think i've seen that button tool at walmart
petsrus6: i forget it's name
mjvoigts: Really? Wal-Mart carries them??
DMP: Veronica, i have rented wheelchairs in other cities. Actually, that was many years ago before i was using a scooter. I am now remembering that i did it because we were in a city where i didn't know anybody and it was safe. It was the first time i "gave in" and used a wheelchair. I learned that i didn't like it when someone had to push me around because i was at their mercy and i couldn't go where i wanted to go, when i wanted to go.
bullygirl Logs Out
Veronica: i agree Shelley i felt the same when i had to use a wheelchair
Veronica: as much as my children loved "pushing" their mom around i hated it
petsrus6: shelley might know for sure who carries them
Veronica: i would think a tool similar to a needle threader only bigger would be good to button
bethkg: To DMP: I had to go away for a weekend to use a cane where no one knew me. i have come a long way in 12 years
DMP: To Mjvoigts: There are devices that can help with buttons and one of them is called a "button hook." I would look at a hospital store or home health supply store, even some walgreens or cvs carry them. You can google it, but i think the shipping may be as much as the device. A great resource for anybody looking for these products would be your hospital occupational or physical therapy department. They will know how to find these products in your area.
amsm Disconnects
Veronica: i always keep my can in my van
Veronica: my biggest fear is being outside the house and loosing the feeling in my legs and being stranded
petsrus6: me too
Veronica: welcome zinger
DMP: Another resource for locating special devices would be your local independent living center. Every city in the United States has access to an independent living center. I will look for the URL and get it to you by the end of the chat or send it to veronica tomorrow.
bethkg: carry a cell phone v
Veronica: i do now bethkg :D
Veronica: thank you shelley something like that will come in handy
Veronica: i will be posting any links Shelley has to share with us first thing tomorrow
CROD: is anyone experiencing numb feet? i am having problems with my right foot when i get really tired my foot seems to give up on me and almost start folding in on me.
Veronica: i have that too Crod on my left foot
MaryAnn: Not at the moment but I went through years back in the begining of MS with a knumb left foot
CROD: have you done anything for it like a brace or something?
 zinger: hi everyone, sry didnt want to interupt when i came in
Veronica: shelley do you know of any devices to help with drop foot that don't need a script?
Veronica: i did ankle strengthening exercises with physical therapy
DMP: Feeling stranded is a scary feelling. I can certainly understand that. I might suggest a couple of things. Wear a life alert button around your neck so you can activate it if you are outside and need help or carry a walkie talkie. If no one is home make sure a neighbor who is home has the other walkie talkie. They work for up to 2 miles. We have used them on trips and in shopping malls. It's a great idea.
Veronica: my PT made a rubber bungy type tool for me
Wyn: since my knee problem my biggest difficulty has been the legs slowly "concertina-ing" and me just subsiding rather than actually falling to the ground, you know...?
DMP: I have not experienced numbness in my feet. I wonder if someone else has a solution for this?
Veronica: shelley we have wireless phones in every room of our house including the bathroom
CROD: what kind of excercises your pt suggest?
MaryAnn: noodle knee when it hits me
Veronica: the most common place i fall is the bathroom and stairs
Veronica: flexing the foot Crod
SHERRY_G.: BOTH OF MY FEET GO NUMB QUITE A BIT. THEY DO SHARE THEIR AGGRAVATION TO ME...SOMETIMES ONE, SOMETIMES BOTH!
04/5/06 18:28:36 Veronica: the rubber cord he gave me has a loop on the end ...i put my foot through it just to the ball of my foot and hold the other end for resistance
bethkg: To DMP: I no longer walk and legs are very weak. when home, i use a velcro strap to hold legs together. do you know of anything more attractive that i can use when out in public
bethkg: otherwise, legs flolop over
bethkg: flop
DMP: I rearranged the furniture in my house and put chairs down the hallways to help me walk and to sit when i become tired. I have been in the home of a friend who put a railing along the hallways in her house. Another thing we did was put railings on both sides of the stairways, because i only have the use of one hand and that way i had a railing going up and going down to hang onto.
Veronica: great idea
Veronica: sure beats going up and down the stairs on your rear
Veronica: that was my sisters suggestion lol
Diane: bethkg i use a ribbon
Veronica: i do have a chair at the bottom of each of my set of stairs and on the landing so if i get too tired i can take a break
bethkg: thanks diane
zinger: bethkg, i dont know what you will think to this idea, i suppose its the same kind of principle to the velcro strap but maybe a bit funkier. how about using a webbing belt? these an be bought in different brands, say for instance a brand that matches an item of clothing?
Veronica: a belt is a great idea
DMP: To BethKG: If you are wearing a skirt that would be an easy way to hide it. However, if you are like me and always wear pants i wonder if you couldn't make a band out of black, navy blue, or brown material with velcro. This would be less noticeable when wearing black, brown, or blue pants. I know this is a little limiting but this may camouflage the strap rather than wearing a white belt.
0Veronica: especially if you have some of the wide belts left over from the dreaded 80's
SHERRY_G.: bethkg- I USE A GAIT BELT TO KEEP MY LEGS TOGETHER, EVEN IN PUBLIC...OTHERWISE I AM "SPREAD EAGLE" AND DO NOT WANT THOSE THAT I MEET TO APPEAR "READY FOR ACTION SEXUALLY!" LOL
Veronica: lol sherry
zinger: bethkg, how about making a feature of it. like not trying to hide it but make it an accessory?
bethkg: lol sherry
DMP: I wish some of you could hear me laughing at some of your comments.
Veronica: lol i bet
Veronica: you could probably use a silk scarf too
Veronica: i have a few long ones
 DMP: I don't want to appear that i don't have a sense of humor because i busy trying to read, think, and guide Reina. You probably realize that is a challenge for us with MS at the end of a long day. I hope i am giving you value for your hour. I am enjoying this!
 bethkg: i should have mentioned my neurological pain from burning skin. this limits what i can put around my legs
Veronica: we're learning a lot and really appreciate your input shelley
 zinger: sorry about that bethkg, i didnt even think of that.
 Veronica: i have a question about walkers
Wyn: likewise beth - i've not worn socks - whatever the seaszon ! - for at least 5 years !
 Veronica: are there any we should "avoid"?
 bethkg: wyn, i have been missing you
 bethkg: walkers with large, quick wheels!
Wyn: thanks beth, likewise #2 - been having a tricky last month or so
 DMP: Avoid the walkers that you don't feel in total control. Again, try before you buy and don't feel pressured by sales people unless you are absolutely sure it is the right one. There are many brands and types to try.
Veronica: are the ones with seats that flip down sturdy ?
debbietony: I am newly diagnosed with ms and have no visible disabilities.In your oppinion is there anything for me to do to keep from having disabilities, as many of you do here?
petsrus6: just take some desease modifying med and hope
 CROD: i was in a restaurant the other day, and in comes a man with his walker attached to the handles he had bike streamers and a horn! i thought that was so cute
Veronica: exercise when you can
zinger: listen to ur body. if ur fatigurd, dont push too much and take time out.
 Veronica: keep your muscles tone
Veronica: lol Crod
 Veronica: did he honk his horn at you?
 Diane: rest...
 Veronica: wb diannadebble
DMP: There is an excellent place to try scooters, lifts, walkers, and any other type of equipment. ABILITIES EXPOS in major cities around the country at different times of the year. Chicago, Los Angeles, Houston, etc. Try and attend, if you can, it's like a consumer trade show for people with all kinds of chronic illnesses and disabilities.
 bethkg: to DMP: a couple of years ago, i bought a jazzy powerchair. the next day i knew that it was not for me. the dealer would not take it back. i donated it brand new to the ms society.
petsrus6: yes, that too, keep as active as possible
zinger: wb diannadibble
 CROD: no, but he sure had a sense of humor and made me feel alot better
debbietony: thanks
Veronica: humor gets me through a lot
DMP: The flip down seats are wonderful and sturdy. At least the ones i've seen.
 SHERRY_G.: I TRULY WISH I HAD STARTED A THERAPY DRUG EARLIER, MAYBE, MAYBE I WOULD STILL BE USING MY LEGS.
Veronica: i get notices about the abilities expo every year but have yet to attend
 Wyn: nite all, midnight-40 so eyes drooping lol, thanks Shelley
 Veronica: they hold one in new jersey every year
 bethkg: without my sense of humor, i could not make it with this disease
bethkg: nite wyn
mjvoigts: I just googled it and there are Abilities Expos in N. Cal., S. Cal., Texas, Detroit and New York.
Diane: they r great v
Veronica: night wyn
 SHERRY_G.: I, MYSELF, WOULD RATHER LAUGH THAN CRY!
 zinger: thanx for the chat. i have to leave. have a goodnight everyone
petsrus6: there's a delicate balance between keeping active and not overdoing it, it takes time to find it debbie
 Veronica: me too sherry..i think after spending at least the first year of my diagnosis crying i'm done with tears
Diane: v i go every yr
Veronica: tc zinger
petsrus6: nite zinger
bethkg: there is one coming up here in so. ca in may or june. that is where i bought my first amigo 8 years ago.
04/5/06 18:44:37 Veronica: diane is that where you got your wheelchair?
debbietony: i am learning that pets
DMP: My first suggestions would be to take to your doctor about the disease modifying drugs. You may or may not want to do them. For many of us, or for me at least, these drugs were not available when i was diagnosed. Because i am not ambulatory and have primary progressive MS i don't qualify to take them. The best advice is to pay attention to your body and when you are tired rest. Don't skip meals. Eat a good diet and surround yourself with positive helpful people.
Diane: no v
mjvoigts: Are there expos that are smaller in other parts of the country? I'm in FL and none of those places are anywhere near me.
Veronica: thats the 2nd time i've heard that today Shelley
Veronica: about the positive people part
debbietony: Thanks shelley
Veronica: i think thats very important
SHERRY_G.: TOTALLY AGREE, DMP
DMP: I know that sounds simplistic but Americans are so hard on themselves and hard driving as a rule that we don't listen to ourselves. We just want to do "one more thing" so having he diagnosis is kind of a wake up call to take good care of yourself. Your body can't do everything like it used to and you don't want to stress it any more than you have to.
Veronica: certainly was a wake up call for me
Veronica: i had forgotten the things that were important to me
Veronica: got busy in my "job's" and running around trying to get a million things done at once
DMP: to mjvoigts: I'm not aware of any smaller expos.
Veronica: you might want to contact your NMSS branch office
mjvoigts: Sorry, I have to go. Nice chatting with you.
Veronica: msaa might also know of an expo in your area
Veronica: or be able to convince the organizers to have one in your area
DMP: You have to keep asking about everything? What types of scooter, walker, drug works for you. Where might i find a trade show with products to help people with chronic illnesses and disabilities.
DMP: Take the information and evaluate it based on your wants, needs, and pocket book and make a decision with as much information as you can.
CROD: swimming is the best thing for me, plus i t's good excercise!
MaryAnn: I agree and do it ehrn I can
MaryAnn: when I can
 DMP: You also have a wonderful community here and each of the people on the chat has their own network and knowledge. I applaud all of you for taking part in this positive conversations about how you are solving the problems you have to deal with in the world of MS.
Veronica: i used to love to swim but the gym i belong to never keeps the water temp at a good spot..its always way too warm for me
bethkg: thanks shelley for the great info. thanks v for organizing this. i have to get ready to go out to dinner.
DMP: I agree. Swimming is the best, best, best thing i have ever done to improve my stamina, breathing and comfort.
CROD: i used to love to go in the jacuzzi, but tooooohot now
drado: I tried water arobics and it wore me out pretty fasr
drado: fast
bethkg: thanks to everyone else for your ideas
Veronica: tc bethkg
CROD: yes i tried that with the senior citizens class and they wore me out!
04/5/06 18:54:25 Diane: tc bethkg
SHERRY_G.: ME TOO, V...PLUS I CAN'T SWIM, BUT I LOVE TO SOAK UP RO MY WAIST.
petsrus6: water arobics is a lot asfer for us than reg arbobics lol
Veronica: don't feel bad my mother is 75 and out walks me
DMP: Veronica before we sign off i want to make sure that you post this whole chat on your friends with ms log because i my computer crashed and i lost some of the comments. I hope that is possible.
debbietony: well i just started water arobics and i drained me terribly
Veronica: yes i will certainly do that shelley
Veronica: Here are some important Web sites for obtaining more information after the chat: To order Shelley's MS Tips book www.demosmedpub.com/ www.MeetingLifesChallenges.com) To sign up for FREE, Meeting Life's Challenges teleclasses www.meetinglifeschallenges.com/classes/ To sign up for the FREE, monthly Meeting Life's Challenges E-zine www.meetinglifeschallenges.com/ezine/ezine.php#signup
CROD: thanks guys nice talking to you
Veronica: remember if you missed anything i will be posting the transcripts on our web site later
DMP: The swimming classes i first went to my physician or neurologist and he gave me a prescribtion to have an in water evaluation by a physical therapist. Then i had people come with me and learn the exercises that i was supposed to do as a result of the evaluation.
Veronica: nice talking to you too Crod
drado: This was very interesting to me
MaryAnn: Thanks for the vist and hope to catch you again some day
petsrus6: thank you for sharing Shelley and dmp for typing too
Veronica: good idea shelley
DMP: You are welcome.
Veronica: hopefully we'll be able to convince shelley to come back some day for another chat
DMP: Thank you everyone. It has been an honor and a pleasure to be here tonight.
debbietony: shelley you are an interesting person who has had many of the ms struggles and i wish you well and good luck with writting more informative books.
Diane: thank you
Veronica: thank you very much Shelley and DMP for being our guest tonight
drado: Thanks Shelley, I will visit again soon.
Veronica: i think everything went well and i will definetly post your web site link and information so people can find you again
DMP: I always appreciate hearing from readers and people who i communicate with. As you can imagine writing is a rather solitary experience. I am glad to be a part of a group of people who are taking charge and moving forward. I wish you all the best.
drado: And to you too
Veronica: all the best to you too shelley
SHERRY_G.: THIS SURE MADE MY WEDNESDAY EVENING HAPPIER!! THANX FOR ALL THE SHARING!!
MaryAnn: awwww thank you and only the best of wishes and health to you too
DMP: I heard you shouting Sherry/ Thank you for making my Wednesday evening happier too.