Montana

[KateO]

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]

Hi Kate. We have a few members from Montana. Hopefully they will see your post and jump in. Welcome.

AL.

[Montana Carol]

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]

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]

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]

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]

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 dxed 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, dxed 8/04 at age 40)

[KateO]

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]

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]

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]

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]

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]

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]

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]

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

[MtPockets]

For the benefit of Christians who might want to share things with one another, I wanted to let you know about the thread titled, "Christians sharing hope with one another".

It seems many are not familiar with this thread. Please feel free to post and share with us.

God Bless
Capt AL

[Montana Carol]

Capt AL, I looked up Geraldine on the Montana map. It's east of Great Falls and SE of Ft Benton on State Hwy 80. I love that area -- not so developed as our western part of the state. Our regional Christian Church (Disciples of Christ) office is in Great Falls, and we have good friends in Lewistown, southeast of Geraldine. We've gone on a different road, but have been over in that area quite a few times. Actually, our forum friend KateO is closer (Helena) than I am to your sister (in-law?).

Wow! 106 degrees! We actually had two days of 108 in July -- and hardly anybody has air conditioning here. We only had one day in July below 90, and mostly it was between 95-105. We 'bout died! It did cool down at night, though, usually into the mid-50s after those hot days; so we could cool the house down and start cool each morning. Our humidity is lower than yours, too, I bet.

Hey -- I wasn't among the PALS crowd when Katrina and Rita hit -- was Gulfport damaged in those storms? My grandson-in-law is from Waveland. His divorced parents' homes were both about destroyed by falling trees, I think. He's a policeman in Nevada, but went to MS and helped with police support and rescue for a week or two at that time. I hope your family and friends escaped the worst of it. :(

[MtPockets]

We had winds of 165mph for over 6 hours and tornadoes all over the place. A thirty foot storm surge took out all the houses and businesses on the beach. My son had a home 2 blocks from the beach and lost everything, my mother in law lost her home. My wife and I were spared the worse of it because we are on high ground north of the interstate I-10. We still lost about 35 trees and had to replace the roof.

Last night our low actual temp was 82, high today 102. Power bills for ac are killing us. I wish I could afford to move up there in Montana, but we will be fine here.

If there are any Christians on this thread I wanted to let you know about a Thread called, "Christians sharing hope with one another". It's a good place to encourage one another and share stories.

God Bless
Capt AL

[Montana Carol]

Al, did your son and mother-in-law get help to rebuild? What an ordeal for all of you there! What about FEMA? Were they any good in your area? Did the insurance companies come through?

I just went to your My Space page and enjoyed looking at all your family pictures, including the one from your trip to Montana! What a nice-looking bunch, including your bearded self. I'm jealous of those red-headed kids (grandkids?). I thought for sure I'd get a redhead in our bunch -- my grandparents were both redheads, and I had three carrot-top aunts and uncles. But I guess I didn't have the gene to pass on to my kids. I always told my daughters they HAD to marry a red-headed man, so of course they wouldn't have anything to do with any boy who even had sandy hair! :-D

And I just re-read all the posts on the "Christians Sharing Hope" thread, and left you a heartfelt "Attaboy" there. I wish I could share my faith in such an uplifting way as you do! Way to go, Al!

[MtPockets]

My family which has 4 children and 15 grand children did not receive one penny of help from FEMA or any other organization. The insurance companies are still in court fighting and refusing to pay claims. So much for the "Good Hands people".

My son who lost everything is an er doctor so he was able to take care of his own family as well as help other members of the family. My poor Mother in law died of bone cancer after seeing what was left of her house. She went and stayed with her other daughter in Montana that I was talking about. She kept saying she wanted to go to HER home. She never understood or accepted that she no longer had a home to go to.

After things settled down and we go power, water, etc. we brought her back to Mississippi, and soon thereafter had to put her in the hospital. She was surrounded by family as she passed away. I think she just gave up when she lost her home.

There are thousands of stories like her's here still. We still have over 16,000 people living in FEMA trailers and they are getting sick from the formaldehyde gases in the trailers. America seems to lost focus on the plight of the Katrina victims. They are more worried about Paris Hilton latest "news" than caring about our own citizens. We had a 80 year old lady in a wheelchair living in a tent on her own property for 6 months, before she got a fema trailer. It is sad to hear all the horror stories.

Enough of the negative stuff. Everyone have a great weekend.
God Bless
Capt AL

[KateO]

Carol -

How was the Missoula IceBreakers conference last month? I chickened out of going at last minute...

Since then I have discovered that a friend of mine, whose father died of ALS, is one of organizers behind effort to get more support for those of us with ALS living in Montana.

I just got back from the Hopkins ALS Center last week. I am so grateful I am being seen there. They are willing to work with my local internist.

I may be travelling to Missoula next month. I can't remember how far out of Missoula you are?

All the best,
Kate

[Montana Carol]

Oh, I'm so glad to see your post! I've been worried about you ever since we didn't see you at the conference. Did you read my posts where I said I brought home a bundle of reading material/references for you? If we get together I can give 'em to you. We live near Hamilton, about 50 mi. south of Missoula. Maybe I could come in to Missoula and meet you. We could have lunch or something if you'd like that.

Since then, Mike and I walked at the Missoula Walk to D'Feet ALS on 9/22 and found it most inspiring! We walked with some people we met at the Ice Breakers conference. They came all the way from Billings for both events. I've been bugging all my family and friends ever since for pledges/donations.

Let me know what you want to do.
Carol

[KateO]

Carol -

Sorry you were worried about me! I just now read your earlier post. If I can figure out out to IM you, I'll do that. That's not an option on mine - since I am concerned about privacy and had a bad experience with IM on another Forum..

I'd love to get those materials from you. I too am very slow progressing. I am 47 years old. How old are you? I'll try to IM you.

Thanks for reaching out. I appreciate it.

I have purposely been staying away from the Forum past month or so. It really is better for me NOT to spend too much time here. I really want to focus on living and being present for my two children, 11 and 14 - and, my husband - AND work!

Hope we can figure out the IM stuff. I tried earlier and it didn't work.

KateO

[Montana Carol]

KateO, You can click on my name on the post above yours (the blue link). It'll take you to my Profile page, I think. There you'll find another link to send a private message (PM). I'll look forward to hearing from you. Carol