FSHD Chat
froglady (Oct 13, 2008 8:44:53 PM)
froglady (Oct 13, 2008 8:45:33 PM)
Welcome to the FSHD Chat
froglady (Oct 13, 2008 8:50:41 PM)
Thought for the night: When it is dark enough, men see the stars...Emerson
Ole Barn (Oct 13, 2008 8:58:11 PM)
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froglady (Oct 13, 2008 8:58:24 PM)
Hello there my friend. Welcome aboard
froglady (Oct 13, 2008 8:58:37 PM)
We are a little lonely tonight
Ole Barn (Oct 13, 2008 8:58:39 PM)
Hi Froglady
froglady (Oct 13, 2008 8:58:49 PM)
How are you doing?
Ole Barn (Oct 13, 2008 8:59:03 PM)
Very well. Thank you. Give me a minute to get my screen straightened out
Ole Barn (Oct 13, 2008 9:00:14 PM)
Thanks for your patience I'm all set now
froglady (Oct 13, 2008 9:00:40 PM)
Are you pretty cool up there now? We turned off cold this morning
froglady (Oct 13, 2008 9:01:02 PM)
A record-breaker. 38 degrees this morning. Unreal
Ole Barn (Oct 13, 2008 9:01:15 PM)
We are a bit below average, but it's not very cold
froglady (Oct 13, 2008 9:01:47 PM)
We are going back up to the 90's before week's end, this was just one of those freaky weather incidents
Ole Barn (Oct 13, 2008 9:02:02 PM)
I don't remember where you live
froglady (Oct 13, 2008 9:02:12 PM)
I live near Tucson, AZ
froglady (Oct 13, 2008 9:02:30 PM)
Have you ever been here?
Ole Barn (Oct 13, 2008 9:02:39 PM)
Every once in a while the desert can get cold
Ole Barn (Oct 13, 2008 9:02:54 PM)
I have never been to Arizona, I have a good friend that lives in Phoenix
froglady (Oct 13, 2008 9:02:55 PM)
Actually it can get very cold
froglady (Oct 13, 2008 9:03:17 PM)
Phoenix is even warmer than Tucson. We are about 100 miles south of Phoenix
froglady (Oct 13, 2008 9:03:25 PM)
Near the Mexican border
Ole Barn (Oct 13, 2008 9:03:28 PM)
Were you able to work out the issues with your Roho cushion?
froglady (Oct 13, 2008 9:03:42 PM)
No, not yet. It has been unbelievable
froglady (Oct 13, 2008 9:04:08 PM)
A new company took over the company that I was working on. They say they are now working on it again. We shall see
Ole Barn (Oct 13, 2008 9:04:50 PM)
I was thinking about being disappointed about not going to Denver Colorado for the convention,
froglady (Oct 13, 2008 9:04:53 PM)
I got this prescription in February. Our local MDA is working on it for me
Ole Barn (Oct 13, 2008 9:04:55 PM)
but then I realized at 5000 feet I would've had a great deal of difficulty for four days. Due to the thin air
froglady (Oct 13, 2008 9:05:38 PM)
Yes, you might have had a problem. I was up there a couple of years ago, though, and I made it pretty good
froglady (Oct 13, 2008 9:06:11 PM)
However, I went up to Northern AZ and had a problem breathing. I felt like it was the pine trees that I may have been allergic to
Ole Barn (Oct 13, 2008 9:06:24 PM)
That's ridiculous, ordering the cushion is a no-brainer. I ordered the one I'm currently using directly from Rojo and saved $125.
Ole Barn (Oct 13, 2008 9:07:11 PM)
All you need is the depth and width of the actual seat, then talk to either Medicare or MDA about ordering one for you.
froglady (Oct 13, 2008 9:07:14 PM)
I have the cushion, but not the seat for it to fit on. They came out and measured for it last May
Ole Barn (Oct 13, 2008 9:07:42 PM)
You are talking about using it on a wheelchair, are you?
froglady (Oct 13, 2008 9:07:54 PM)
The PT at the MDA office said I needed a new seat before they put on the Roho cushion
Ole Barn (Oct 13, 2008 9:08:14 PM)
What kind of chair do you have?
froglady (Oct 13, 2008 9:08:15 PM)
Yes, my vehicle is a mini-jazzy
Ole Barn (Oct 13, 2008 9:08:33 PM)
You must be a tiny thing
froglady (Oct 13, 2008 9:08:41 PM)
I don't see why the seat I have wouldn't work just fine, but they say it will not fit
froglady (Oct 13, 2008 9:08:55 PM)
I weigh 110. That isn't too tiny
Ole Barn (Oct 13, 2008 9:09:34 PM)
So right now, you are sitting on a cushion, correct?
froglady (Oct 13, 2008 9:09:55 PM)
Yes
Ole Barn (Oct 13, 2008 9:10:12 PM)
What does the cushion sit on?
froglady (Oct 13, 2008 9:10:22 PM)
I can only sit on it just so long then I get to hurting in my hips and legs
froglady (Oct 13, 2008 9:10:37 PM)
The seat of my jazzy
Ole Barn (Oct 13, 2008 9:10:56 PM)
Is it a piece of flat metal?
froglady (Oct 13, 2008 9:10:59 PM)
It is a really hard seat. I really don't see why though that the Rojo wouldn't work
froglady (Oct 13, 2008 9:11:10 PM)
No, it is actually a padded seat, but hard
Ole Barn (Oct 13, 2008 9:11:26 PM)
What does the padded seat sit on?
froglady (Oct 13, 2008 9:11:37 PM)
Metal
Ole Barn (Oct 13, 2008 9:12:07 PM)
Did they measure the metal piece to get the size for the cushion?
froglady (Oct 13, 2008 9:17:20 PM)
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Ole Barn (Oct 13, 2008 9:17:52 PM)
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froglady (Oct 13, 2008 9:18:11 PM)
Did you get booted too?
Ole Barn (Oct 13, 2008 9:18:21 PM)
Yes I did
froglady (Oct 13, 2008 9:18:22 PM)
I had trouble getting back in
froglady (Oct 13, 2008 9:18:35 PM)
I guess we just had some kind of glitch in the system
Ole Barn (Oct 13, 2008 9:18:38 PM)
Me too
froglady (Oct 13, 2008 9:19:03 PM)
I even tried getting on the ALS chat, but I couldn't get in there either
froglady (Oct 13, 2008 9:19:09 PM)
Oh well, it seems fixed now
froglady (Oct 13, 2008 9:19:20 PM)
Did you get my message about the election?
froglady (Oct 13, 2008 9:19:29 PM)
I was just saying I would be glad when it is over
Ole Barn (Oct 13, 2008 9:19:38 PM)
There might be a problem with the chat room server too
froglady (Oct 13, 2008 9:19:49 PM)
Yes, probably so
Ole Barn (Oct 13, 2008 9:19:53 PM)
Yes I did but my mouse was on the fritz, so I can respond
froglady (Oct 13, 2008 9:20:34 PM)
Brit is in a skilled nursing center because he broke his left arm
Ole Barn (Oct 13, 2008 9:20:59 PM)
Well personally I hope McCain remains your Sen.
froglady (Oct 13, 2008 9:21:00 PM)
I got an update from him via his son, and he doesn't know for sure what the next step for him will be.
froglady (Oct 13, 2008 9:21:09 PM)
LOL
froglady (Oct 13, 2008 9:21:17 PM)
I am pretty sure that will happen
froglady (Oct 13, 2008 9:21:27 PM)
But one never knows
froglady (Oct 13, 2008 9:21:51 PM)
Are you still involved in politics up there?
Ole Barn (Oct 13, 2008 9:21:54 PM)
So is Britt still hospitalized?
Ole Barn (Oct 13, 2008 9:22:03 PM)
Yes, I'm quite involved in politics
froglady (Oct 13, 2008 9:22:05 PM)
Yes, he is.
Ole Barn (Oct 13, 2008 9:22:14 PM)
Where does he live?
froglady (Oct 13, 2008 9:22:27 PM)
Brit does not even have access to a computer. His son sent me the e-mail
froglady (Oct 13, 2008 9:22:34 PM)
He lives in Holland, MI
Ole Barn (Oct 13, 2008 9:22:48 PM)
Is that Holland Michigan?
froglady (Oct 13, 2008 9:22:52 PM)
Yes
froglady (Oct 13, 2008 9:23:00 PM)
Have you ever been there?
froglady (Oct 13, 2008 9:23:09 PM)
I was up there in 53'
Ole Barn (Oct 13, 2008 9:23:17 PM)
I have not been out of the Pacific Northwest very much
froglady (Oct 13, 2008 9:23:25 PM)
So you were born up there?
froglady (Oct 13, 2008 9:23:36 PM)
Do you remember my twin sister, Jo?
Ole Barn (Oct 13, 2008 9:23:37 PM)
Yes I was, Yakima Washington
Ole Barn (Oct 13, 2008 9:23:53 PM)
I remember you have a twin sister, yes
froglady (Oct 13, 2008 9:24:09 PM)
She is moving away from here by next summer and going to No. CA to live near her daughter.
froglady (Oct 13, 2008 9:24:26 PM)
Do you know where Eureka is?
Ole Barn (Oct 13, 2008 9:24:27 PM)
Which part of Northern California, she moving to?
froglady (Oct 13, 2008 9:24:50 PM)
I have two sisters living up there also
Ole Barn (Oct 13, 2008 9:25:00 PM)
Yes I do, it's on the coast near the Oregon border. Only Crescent city is between Eureka and the Oregon border.
froglady (Oct 13, 2008 9:25:09 PM)
You are correct
froglady (Oct 13, 2008 9:25:28 PM)
She lived there for 30 years before moving back here so it is pretty much home to her
Ole Barn (Oct 13, 2008 9:25:56 PM)
So Tucson is your family home is that correct?
froglady (Oct 13, 2008 9:26:00 PM)
Her hubby passed away in Feb and her children worry about her being alone
froglady (Oct 13, 2008 9:26:36 PM)
I have lived in Tucson for 34 years, lived in Phoenix before that. But I was born in OK
Ole Barn (Oct 13, 2008 9:26:45 PM)
It's nice to have children who care
froglady (Oct 13, 2008 9:26:46 PM)
We came to AZ when I was 14 years old
froglady (Oct 13, 2008 9:27:09 PM)
It certainly is. Jo has three girls and they are all so good to her
froglady (Oct 13, 2008 9:27:37 PM)
Jo lost her first husband when the girls were 6, 4 and 2 so they have always been very close
froglady (Oct 13, 2008 9:27:56 PM)
She remarried when the girls were teenagers
Ole Barn (Oct 13, 2008 9:28:22 PM)
Sounds like she waited a respectable pray of time before hooking up again
Ole Barn (Oct 13, 2008 9:28:49 PM)
My software is working better, but I still don't get 100% on it
froglady (Oct 13, 2008 9:28:49 PM)
Her girls were definitely her first priority. She did a superb job raising them
froglady (Oct 13, 2008 9:29:15 PM)
Are you using the voice recognition software?
Ole Barn (Oct 13, 2008 9:29:16 PM)
Parenting is the most difficult thing that we have to do in our lives, but it is also the activity that we received the least amount of training
Ole Barn (Oct 13, 2008 9:29:30 PM)
Yes I'm using Dragon NaturallySpeaking
froglady (Oct 13, 2008 9:29:31 PM)
LOL that is for sure.
froglady (Oct 13, 2008 9:29:46 PM)
Isn't it great they have such great software
Ole Barn (Oct 13, 2008 9:29:52 PM)
I type about 10 words per minute for about 10 minutes and then I don't type anymore
Ole Barn (Oct 13, 2008 9:30:22 PM)
I began using Dragon in the early 90s, it sure has come a long way since then
froglady (Oct 13, 2008 9:30:57 PM)
I wonder if they use that in taking minutes nowadays. I worked for our County Board of Supervisors and took their minutes. It would have been great to have had voice recognition back then, but they didn't even have computers yet. lol
Ole Barn (Oct 13, 2008 9:32:08 PM)
The voice actuation software only recognizes one voice
froglady (Oct 13, 2008 9:32:17 PM)
Oh I see
froglady (Oct 13, 2008 9:32:45 PM)
I am going to have to call the office and see how they take the minutes nowadays. Should be interesting
froglady (Oct 13, 2008 9:32:54 PM)
Just never thought about it before. lol
froglady (Oct 13, 2008 9:33:24 PM)
One of our former Board members is now a congressman. His name is Raul Grijalva
Ole Barn (Oct 13, 2008 9:33:41 PM)
I don't see why you can't take the hard jazzy cushion off your chair and simply put the Roho down on the metal plate. That is what I do.
froglady (Oct 13, 2008 9:34:33 PM)
Oh really! hmmm. I am going to call them again tomorrow or have my hubby do it. I haven't let him get involved yet because he can get irate at incompetence, but it really has gone on long enough
Ole Barn (Oct 13, 2008 9:34:56 PM)
I did give you my phone numbers and e-mail did I not?
froglady (Oct 13, 2008 9:35:21 PM)
Yes, I think you did, but maybe you should give it to me again if you don't mind
froglady (Oct 13, 2008 9:37:06 PM)
I can't imagine where everyone is tonight. We had quite a few on last week
Ole Barn (Oct 13, 2008 9:37:34 PM)
Home phone: 503-659-4191; cell phone: 503-515-4575; e-mail: BarneyGorter@comcast.net
froglady (Oct 13, 2008 9:37:51 PM)
Thank you. I will put it in my pda this time.
froglady (Oct 13, 2008 9:40:01 PM)
Do you have any pulmonary issues?
Ole Barn (Oct 13, 2008 9:40:18 PM)
I think it's a great ministry that you have hosting the chat room every week for the MDA FSHers
Ole Barn (Oct 13, 2008 9:40:30 PM)
Yes but please wait just a minute while I get your information into my book
froglady (Oct 13, 2008 9:40:44 PM)
What a nice thing to say. I love doing it.
froglady (Oct 13, 2008 9:41:34 PM)
I am pretty much considered a shut-in and it is good to be able to communicate with others with the same issues. I also like to talk as you may have noticed. LOL
froglady (Oct 13, 2008 9:43:00 PM)
I am also much older than most of the chatters so I can try and help them resolve issues that frustrate them because I have, for the most part already been there.
Ole Barn (Oct 13, 2008 9:43:31 PM)
How do you mean you're so much older?
froglady (Oct 13, 2008 9:43:36 PM)
I am 74
Ole Barn (Oct 13, 2008 9:44:13 PM)
Well I'm 63, so you're not that much older than I am
froglady (Oct 13, 2008 9:44:57 PM)
I also try to bring positive issues to the chat because I feel that is the best medicine ever
Ole Barn (Oct 13, 2008 9:45:00 PM)
I'm having trouble adding you to my address book so would you please e-mail me the information you just put in the private message, thanks
froglady (Oct 13, 2008 9:45:11 PM)
I will be glad to do that
froglady (Oct 13, 2008 9:45:25 PM)
After the chat
froglady (Oct 13, 2008 9:45:45 PM)
I'll bet others had a problem getting on tonight and gave up. What do you think?
Ole Barn (Oct 13, 2008 9:46:30 PM)
Could very well be, people try, give up, and get involved in something else to never return! LOL
froglady (Oct 13, 2008 9:46:43 PM)
LOL you are right I think
froglady (Oct 13, 2008 9:47:16 PM)
I just kept on trying until I was finally able to get on. I was about ready to call my hubby in to help me. He is a computer geek as they say
Ole Barn (Oct 13, 2008 9:47:22 PM)
Have you ever heard of a 101K?
froglady (Oct 13, 2008 9:47:38 PM)
No, what is it?
Ole Barn (Oct 13, 2008 9:47:51 PM)
Last month, they called it a 401K
froglady (Oct 13, 2008 9:47:58 PM)
I always think of 101 as being some subject in college. lol
froglady (Oct 13, 2008 9:48:17 PM)
Oh my goodness!
Ole Barn (Oct 13, 2008 9:48:50 PM)
Just my sick sense of humor showing through
froglady (Oct 13, 2008 9:48:51 PM)
I think 401K is a word from the past
froglady (Oct 13, 2008 9:48:58 PM)
LOL. I like it
froglady (Oct 13, 2008 9:49:51 PM)
The stock market really went up today. Do you think it will stay up? I doubt if it does
Ole Barn (Oct 13, 2008 9:50:17 PM)
From week to week, I never know exactly what I'm going to be doing, let alone whether or not I'm going to feel like sitting at the computer jawboning with other folks from all over the country
froglady (Oct 13, 2008 9:50:51 PM)
I know what you mean. My sister couldn't get on tonight because her back was so out of whack
froglady (Oct 13, 2008 9:51:25 PM)
Sitting at the computer for long periods of time is more than some folks can handle
Ole Barn (Oct 13, 2008 9:51:32 PM)
I need to figure out a way to lose weight, because when I lie in bed on my side now my shoulders hurt so much. I can't sleep for more than a couple of hours at a time
Ole Barn (Oct 13, 2008 9:52:12 PM)
I am probably 50 to 60 pounds overweight, I weighed 138 pounds when I got married. I'm now at about 225 pounds.
froglady (Oct 13, 2008 9:52:13 PM)
I don't know whether losing weight will help your shoulder or not. I, too, have that problem, and I certainly don't need to lose weight
froglady (Oct 13, 2008 9:52:46 PM)
I take 800 Ibuprofen every night and sometimes even have to take something stronger
froglady (Oct 13, 2008 9:52:58 PM)
Do you do stretching exercises?
froglady (Oct 13, 2008 9:53:19 PM)
I do those in the middle of the night when I am hurting and can't figure out what else to do
Ole Barn (Oct 13, 2008 9:53:32 PM)
As much as I can, my wife and I just joined a program at the Jewish community Center, where we can use a therapy pool for exercising, and it will only cost us about $61 per month
froglady (Oct 13, 2008 9:54:40 PM)
That is great. I'll bet that will help you. I used to go to the therapy pool and it really helped,
Ole Barn (Oct 13, 2008 9:54:40 PM)
I am also looking at a possibility of getting a new wheelchair. That does as much as the one I've got now and will additionally, help me to stand up, which may help my physicality a bit.
Ole Barn (Oct 13, 2008 9:55:02 PM)
Our membership begins next Monday
froglady (Oct 13, 2008 9:55:33 PM)
Did you see where they passed legislation regarding wheel chair purchases. Medicare will have to let us have what we need now
froglady (Oct 13, 2008 9:55:48 PM)
President Bush tried to veto it and it passed anyway
Ole Barn (Oct 13, 2008 9:55:57 PM)
I'm going to have to ring off now because my wife wants to do something at eight o'clock. I have no idea what it is.
Ole Barn (Oct 13, 2008 9:56:07 PM)
When does the legislation take effect?
froglady (Oct 13, 2008 9:56:11 PM)
I will be interested in knowing how you do with the therapy pool
froglady (Oct 13, 2008 9:56:45 PM)
I believe it is already in affect. You might want to go to the main MDA page and look under "what's new." I think that is where I found it
Ole Barn (Oct 13, 2008 9:57:04 PM)
I will, until next week. Take care of yourself and let me know how things go with the cushion.
Ole Barn (Oct 13, 2008 9:57:24 PM)
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froglady (Oct 13, 2008 9:57:25 PM)
Standing up is really helpful. I can't stand for long, but I try to do it several times a day for a minute or so
froglady (Oct 13, 2008 9:58:48 PM)
For those of you who may have tried getting on the chat tonight, I hope to see you next week. There appeared to be some kind of a glitch, but I just kept on trying and finally made it in. Have a good week one and all
froglady (Oct 13, 2008 9:58:52 PM)
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