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Montana

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KateO

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Jul 11, 2007
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53
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PALS
Country
US
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Montana
I'm looking for a Montana neurologist. Any recommendations? I've gone to two different local neurologists - and, have decided not to visit either of them again. Neither of them were as compassionate as I wanted.

I see there's an ALS meeting in Missoula next month. I will try to attend that and hope to meet some patients there. How many Montana folks are on this forum? I tried the "search" button - but, couldn't get an answer to that question. Thanks!
 

Al

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May 25, 2004
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7,960
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Diagnosis
10/2003
Country
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On
Hi Kate. We have a few members from Montana. Hopefully they will see your post and jump in. Welcome.

AL.
 

Montana Carol

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Joined
Jun 22, 2007
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85
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Diagnosis
06/2007
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US
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Montana
I'm From Montana -- Hi, Kate!

Hello, there! Are you in western Montana? I'm going to the Montana Icebreakers conference Aug. 17, so I'll hope to meet you there. I've just recently been tentatively diagnosed with ALS by Dr. Stuart Kieran in Hamilton, but he's sending me to Dr. John Ravits at Virginia Mason Hosp. in Seattle for a second opinion/confirmation, on Aug. 3. I like Dr. Kieran very much, and I expect that he will continue to be my main neurologist and perhaps coordinate with Dr. Ravits. Tell us more about yourself, or e-mail me privately if you wish. Sorry you're dealing with ALS, but welcome to this forum! Carol
 

KateO

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Country
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Montana
Hi. I'm in Helena. I found out about the Missoula Icebreakers even through your posting. Thanks for sharing that info. I did call and register. I hope to be there. Only reason I wouldn't go is the drive. I still drive - but, haven't drive more than about ten minutes at a time for the past four months...

Thanks too for the info on your neurologist. I went to Johns Hopkins in Baltimore. They're great. I've tried two local neurologists: Dr Mulgrew in Helena and Dr Dover in Great Falls. I wouldn't go back to either of them. Neither of them were very compassionate. I figure that's what I want and need from any doctor right now.

I'm 47 years old, have an 11-year old daughter and 14-year old son. My main hobbies used to be skiing, biking,hiking, swimming, running. I have been swimming which feels wonderful. I need help both getting in and out of water. But, once I'm in the water I do pretty well. My symptoms started October, 2006 with cramping and tightness in my right calf. I now wear an AFO and walk with two canes. I've had some pretty bad periods of depression, but am feeling better past couple weeks. Just got back from a one-week vacation in Maine where I went swimming every day. That was a great distraction.

I would LOVE to connect with some Montana folks and look forward to meeting you and others in Missoula next month.
 

Montana Carol

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Jun 22, 2007
Messages
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Diagnosis
06/2007
Country
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See You At the Conference, KateO

Oh, you're not so far away, although if it's hard for you to drive, that makes it seem a lot farther. Are you a single mom? No one to drive you? If it would help you, you could stay at our house (50 mi. south of Missoula) that night. We have an extra bedroom. You don't have to make up your mind right now -- but think about it, and after you get a look at us, you can decide. Or if you stay in a motel the night before, we could pick you up and take you to the conference so you wouldn't have to drive in Missoula very much. I don't know, I'm just thinking as I type. If you feel comfortable, not knowing us, you could stay here the night before too. Think of it like a church doing where members put visitors up at their houses!:) We've done that quite a few times for visiting choirs, etc.

There's another forum member, lunarruna, who lives in eastern Montana. I don't know if she's planning to come to the conference or not. She's a caregiver, been on the forum for awhile so maybe she feels she knows more than she ever wanted to about ALS. :( Maybe she'll see this and jump in.

Maybe you have some ideas. Lay 'em on me if you do.
Carol
 

KateO

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Country
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Thanks Carol. But, if you're south of Miss
that's more of a drive for me. I'm not a single mom. But, my husband works. I do have a good friend living in Missoula. I'll ask if I can stay with her. I would really like to attend the conference and plan to do so! Look forward to meeting you then.
 

lunarruna

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Joined
May 20, 2006
Messages
145
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xx
Hi Kate and Carol,
I wont be able to make Missoula.....Shannon is quite advanced in his ALS and we no longer go anywhere. I used to live in Missoula and it is always fun to visit there.
Kate--There is an ALS Clinic that MDA sponsors, in Billings and Great Falls...they have it a certain day(s) of the month. Shannon was diagnoseded at Mayo in MN and then by the time we found out about the MDA clinic in MT we couldnt travel that far. They seem good and the docs have both been there a long time (in Billings anyway). I dont know about the GF clinic. go to www.mda.org and type in your zip code to get the MT offices info.
We live way out on the prairies, its a 8-9 hr drive to Msla!
More later...welcome Kate..
Beth
(CALS to husband Shannon, diagnoseded 8/04 at age 40)
 

KateO

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Country
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Montana
Beth -Thanks for the information about the monthly MDA clinics in Great Falls and Billings. I'll go to their website next. Best wishes to you and your husband.
 

Montana Carol

Active member
Joined
Jun 22, 2007
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85
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Diagnosis
06/2007
Country
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Reply to Kate and Beth

Beth, I'm sorry. I didn't realize how advanced your husband's ALS is until I read your other post re: the assistive devices. You have all you can handle, I'm sure. Please forgive my insensitivity in thinking you might still be gallivanting around to meetings. I'm sorry we won't get to meet you in person, though. Thanks for the info about the MDA monthly meetings.

Kate, I'll look forward to seeing you in Missoula Aug. 17. I'm glad your coming.
By that time, I'll have seen Dr. Ravits and maybe will know more about my own prospects. My progression has been very slow compared to yours and others, so I'm counting my blessings and feeling thankful for all I can still do, and for the fact that I've gotten to see my kids and grandkids grow up. I have great-grandchildren, too, but I don't get to see them very often since our family is scattered all over the country.

Maybe I'll check out the Great Falls MDA meetings, too.

Carol
 

Debohern

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Aug 1, 2007
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12
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ID
Montana native

So sorry to see you all on this site but happy to read all of the info about the clinics, docs, etc. in Montana. My mom lives in Billings and was diagnosed in June with ALS by Dr. Okan and Dr. Echeverri also concured after doing her EMG and nerve test. She has bulbar onset, slurred speech, choking, etc. She got another opinion in Boise in July and he wasn't convinced it was ALS. So we now say she has an illness that doesn't have a title. Somedays I'm convinced it's ALS and others I'm constantly trying to prove that it isn't. I contacted an ALS center in SLC and they were super to talk with. We won't go there for a consult unless she progresses. Mom is 79 y/o and has always been quite active. My prayers go out to all of you, especially Beth and Shannon (my mom cheered for the Honkers many years ago!). You sound so young, one thing we know ALS does not discriminate, does it. God bless you and I looked forward to keeping an eye on this thread. Feel free to private message me.
 

hkohlman

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Joined
Jan 2, 2007
Messages
42
Country
US
State
Montana
Hi KateO

Hi kate my name is Heather. I live in Billings. My dad is 65 and has ALS. I just thought I would introduce myself. Please feel free to private message me anytime. Us fellow Montanans need to stick together!
 

Montana Carol

Active member
Joined
Jun 22, 2007
Messages
85
Reason
PALS
Diagnosis
06/2007
Country
US
State
Montana
KateO, I Missed You

KateO, I've been worried about you since the Montana Icebreakers conference last Friday. Are you okay? I got an extra pile of handouts at the meeting to give to you. You can PM if you like, and let me know if you want the info. There are lots of resources they told us about, and there's a list of people who attended, too. I'm so sorry I didn't get to meet you; but I did meet some other nice folks from Montana, including a friendly gal from Anaconda whose husband has bulbar-onset ALS and a feeding tube. She's been going to the ALS Assn support group meetings in Spokane and has found them to be very positive for her. Oh -- the ALS Assn is going to try to set up a branch here in Montana. A woman from Bozeman volunteered to help get that going.

I got my final diagnosis from Dr. Ravits at Virginia Mason Hosp. in Seattle on Aug. 3. He says that since my progression has been slow so far, it'll probably continue to be slow. I hope he's right, although I won't want it to go slow in its final stages. I guess it's a tradeoff. I'll just take it one day at a time and thank the Lord for all my blessings, and trust Him to take good care of me.

We're getting some relief this week from the heat and the smoke from our many forest fires. Is it smoky in Helena too? We're going to a church camp in Lincoln on Labor Day weekend, and I'm sure hoping for good weather and clear skies then.

Hope to hear that you're okay. Maybe we can still meet at one of the MDA meetings in Great Falls sometime. I haven't checked those out -- have you? Carol
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
Carol are you close to Geradine? I have a sis-in-law that owns a ranch there?
Just wondering. It sure is beautiful country. Big Sky.

God Bless
Capt AL :-D
 

Montana Carol

Active member
Joined
Jun 22, 2007
Messages
85
Reason
PALS
Diagnosis
06/2007
Country
US
State
Montana
Capt AL, I don't know where Geradine is -- must be east of the Divide. We're over in the west, just off Hwy. 93, about 50 mi south of Missoula. It's gorgeous here except lately, we've been shrouded in smoke from numerous fires burning up our beautiful forests. Thankfully, this week the air has cleared up and the temps have been our more normal 80s. There aren't many ranches left on this side of the Continental Divide -- they're getting chopped up into subdivisions nowadays, with property values going skyhigh. Carol
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
My wife just told me it's close to Ft. Benton. I've been there several times over the past 40 years of married life and visited their farm. The farm about 8000 acres for wheat, and have a feedlot for cattle. I just love it there. Here in Gulfport, Ms we have been having 106 degrees weather, with the humidity index, every day for about 3 weeks. Boy it's hot. I stay inside in my batcave. :-D

God Bless
Capt AL
 
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