Notices

Closed Thread
 
Thread Tools Search this Thread
Old 05-19-2010, 01:08 AM #1
Miss's Avatar
Miss Miss is offline
Very Helpful Member
 
Join Date: 2010
City: Way Down South
State: In the Land of Cotton
Country: US
Diagnosed: 04/2010
Interest: I lost a loved one to ALS/MND.
Posts: 1,757
Miss is on a distinguished road
Miss Miss is offline
Very Helpful Member
Miss's Avatar
Join Date: 2010
City: Way Down South
State: In the Land of Cotton
Country: US
Diagnosed: 04/2010
Interest: I lost a loved one to ALS/MND.
Posts: 1,757
Miss is on a distinguished road
Default What can I expect?

Tomorrow (actually today - it's late) is our first ALS clinic appointment. I'm not sure what to expect. I feel like I have done so much research, but still have no idea what will happen next with this disease. As I have said before, my husband is declining rapidly. I am so afraid something is going to happen, especially in regards to eating and breathing, and we will not be prepared for it. Are they going to tell me when we need to meet with a pulmonologist and a gastroenterologist? We are still waiting for the VA to approve us, so I'm not sure what services will be available through them. Right now, we have private insurance as my husband is still on short term disability. SSDI has not been approved yet, but we won't move to long term disability until October. I do wish there was some sort of manual that gave the caregiver a basic idea of what is going to happen! I feel so lost!
Miss is offline  
Old 05-19-2010, 01:30 AM #2
halfin's Avatar
halfin halfin is offline
Senior Member
 
Join Date: 2009
City: Santa Barbara
State: CA
Country: US
Diagnosed: 08/2009
Interest: I have been diagnosed with ALS.
Posts: 540
halfin is on a distinguished road
halfin halfin is offline
Senior Member
halfin's Avatar
Join Date: 2009
City: Santa Barbara
State: CA
Country: US
Diagnosed: 08/2009
Interest: I have been diagnosed with ALS.
Posts: 540
halfin is on a distinguished road
Default Re: What can I expect?

I know how you feel, this disease can move so fast that it is hard to stay ahead of it, especially in the beginning. We felt much better after our first ALS clinic appointment. We saw many specialists and felt that they were really looking out for us. You will probably see a respiratory tech who will measure breathing function, and a speech therapist who will also talk about feeding issues, as well as other specialists. These people should be able to give you an idea of how soon you will need to consider the various assitive measures that are available. There should be a social worker who can help you navigate the insurance issues. It is a team approach and they will all work with you to figure out what your needs are and how best to meet them.

Studies have shown that these team oriented clinics do much better in managing the disease progression and even extend survival. It can be a very positive experience.

The one problem that you should be prepared for is that they are looking ahead so they may bring up measures and decisions that you hoped were still well off in the future. This can be discouraging if you're not ready for it. But it sounds like you are doing a good job of thinking ahead.

Good luck with your visit, I hope you find it helpful and informative.
halfin is offline  
Old 05-19-2010, 07:33 AM #3
mare's Avatar
mare mare is offline
Senior Member
 
Join Date: 2008
City: Lafayette Hill
State: PA
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 762
mare is on a distinguished road
mare mare is offline
Senior Member
mare's Avatar
Join Date: 2008
City: Lafayette Hill
State: PA
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 762
mare is on a distinguished road
Default Re: What can I expect?

"I do wish there was some sort of manual that gave the caregiver a basic idea of what is going to happen".

Miss, actually, there is! The MDA - ALS division has a manual called "Caregiver's Guide".
There is a companion book "Everyday Life With ALS: a Practical Guide".
Both of these are free to PALS & their families. If you are not yet registered with the mda-als division, you can do so online and request these books.
(it doesn't matter what organization your clinic is affiliated with, you can & should register with both ALSA & MDA)

Also register with the ALSA (if you haven't) and they have info as well. You can request their booklets; it is a set of 6, dealing with one problem in each booklet- i.e. mobility issues, speech & swallowing issues, breathing issues.
These are more general, more of an introduction; I found the mda books more informative.

I have a book that I call my "ALS bible". It is recommended by both organizations. It is:
"Amyotrophic Lateral Sclerosis: A Guide for Patients and Families", by Hiroshi Mitsumoto.
He is the well-known neurologist at Columbia University; and director of the Eleanor and Lou Gehrig MDA/ALS Research Center. He is widely published and recognized.
The third editiion is the latest update (2009).

This is not free, but IMHO worth every penny. On the ALSA site it is $40, but I did see it on Amazon for $26.(last year). It has lots of general info, plus lots of specific info for quick referral. It deals with every issue at every level, including drugs.
I refer to it at least once/week.

Good luck with your visit; we also felt better after our first visit. With all the specialists there at your disposal, you get a sense of OK, there is a plan; someone is going to guide us through this! We are not alone!
mare is offline  
Old 05-19-2010, 09:21 AM #4
abbas child's Avatar
abbas child abbas child is offline
Extremely Helpful Member
 
Join Date: 2008
City: Eastern Shore
State: Maryland
Country: US
Diagnosed: 07/2007
Interest: I have been diagnosed with ALS.
Posts: 2,159
abbas child is a splendid one to beholdabbas child is a splendid one to beholdabbas child is a splendid one to beholdabbas child is a splendid one to beholdabbas child is a splendid one to beholdabbas child is a splendid one to beholdabbas child is a splendid one to behold
abbas child abbas child is offline
Extremely Helpful Member
abbas child's Avatar
Join Date: 2008
City: Eastern Shore
State: Maryland
Country: US
Diagnosed: 07/2007
Interest: I have been diagnosed with ALS.
Posts: 2,159
abbas child is a splendid one to beholdabbas child is a splendid one to beholdabbas child is a splendid one to beholdabbas child is a splendid one to beholdabbas child is a splendid one to beholdabbas child is a splendid one to beholdabbas child is a splendid one to behold
Default Re: What can I expect?

Thanks for the good book tip, Marianne. I just ordered the Mitsumoto book from Amazon. I agree totally with your assessments of the MDA and the ALSA books. The forum and the advice from those ahead of us in the journey is priceless...
Ann
abbas child is offline  
Old 05-19-2010, 03:59 PM #5
Phil's wife's Avatar
Phil's wife Phil's wife is offline
Member
 
Join Date: 2010
City: Wake Forest
State: NC
Country: US
Diagnosed: 05/2010
Interest: I lost a loved one to ALS/MND.
Posts: 135
Phil's wife is on a distinguished road
Phil's wife Phil's wife is offline
Member
Phil's wife's Avatar
Join Date: 2010
City: Wake Forest
State: NC
Country: US
Diagnosed: 05/2010
Interest: I lost a loved one to ALS/MND.
Posts: 135
Phil's wife is on a distinguished road
Default Re: What can I expect?

hi Miss,

We were also at the clinic today. I hope your visit went well and you had all of your questions answered. We saw PT and ordered a four prong cane/walker. Phil had a sleep study done last Friday, no results from that yet. Bertorini is great, but I didn't really see all of the other specialty areas as described in a typical ALS clinic setting. Sherry, MDA rep gave me the MDA ALS Caregiver's guide.

Marianne, thanks also for the book tip, Amazon is getting good business today -- I just ordered it also.

I have to say, as I am sure everyone can relate, doctor's visits are a difficult reality check. Phil is still in the - most of the time he looks healthy phase but on Dr appt days reality hits.

We were at vanderbilt last friday to check out their ALS clinic and doctors. Their clinic has been going for 3-4 years and is very well organized and thorough. We would go there but don't see the 6 hour round trip drive worth it.

Stephanie
Phil's wife is offline  
Old 05-19-2010, 08:42 PM #6
djgators1's Avatar
djgators1 djgators1 is offline
New Member
 
Join Date: 2010
City: Gainesville
State: FL
Country: US
Interest: I am a caregiver for someone with ALS/MND.
Posts: 10
djgators1 is on a distinguished road
djgators1 djgators1 is offline
New Member
djgators1's Avatar
Join Date: 2010
City: Gainesville
State: FL
Country: US
Interest: I am a caregiver for someone with ALS/MND.
Posts: 10
djgators1 is on a distinguished road
Default Re: What can I expect?

I ditto the recommended book by Mitsumoto. Another I found helpful is "Respiratory Management of ALS" by Lee Guion. It is on Amazon for about $50. When researching many of my questions on the internet regarding my husband's symptoms, I found that there is a charge to view the scholarly articles. arrgh! While I still have some questions, I feel these books are excellent resources.
djgators1 is offline  
Old 05-19-2010, 09:15 PM #7
luvnmm's Avatar
luvnmm luvnmm is offline
Member
 
Join Date: 2010
City: Henrico
State: VA
Country: US
Diagnosed: 09/2009
Interest: I am a family member of someone with ALS/MND.
Posts: 295
luvnmm is on a distinguished road
luvnmm luvnmm is offline
Member
luvnmm's Avatar
Join Date: 2010
City: Henrico
State: VA
Country: US
Diagnosed: 09/2009
Interest: I am a family member of someone with ALS/MND.
Posts: 295
luvnmm is on a distinguished road
Default Re: What can I expect?

Thanks to all of you! Miss for asking the great questions and for everyone else giving the outstanding answers! I've tried signing up on the MDA website but kept getting sign on errors. I'll try again tonight. I also plan to hit Amazon to get the Hiroshi book. Sometimes it's the questions you don't know that you need to ask that get answered in the books. Miss, I hope your clinic visit went well. I've been to a couple with my mom and I know the team is taking great care of her.
luvnmm is offline  
Old 05-19-2010, 09:16 PM #8
Miss's Avatar
Miss Miss is offline
Very Helpful Member
 
Join Date: 2010
City: Way Down South
State: In the Land of Cotton
Country: US
Diagnosed: 04/2010
Interest: I lost a loved one to ALS/MND.
Posts: 1,757
Miss is on a distinguished road
Miss Miss is offline
Very Helpful Member
Miss's Avatar
Join Date: 2010
City: Way Down South
State: In the Land of Cotton
Country: US
Diagnosed: 04/2010
Interest: I lost a loved one to ALS/MND.
Posts: 1,757
Miss is on a distinguished road
Default Re: What can I expect?

Clinic went as well as can be expected. They do want my husband to go see a pulmonologist and gastroenterologist. He went from 125% (in February) to 41% on the breathing test. He is currently using a Cpap, but Bertorini thinks he might need the BiPap soon, or at least use the Cpap during the day.

Even though he isn't having trouble swallowing yet, it was also suggested that he get the feeding tube put in very soon. Since there is leg stiffness, Baclofen was prescribed. This worries me a little since weakness is a side effect.

They want him back in 3 weeks. That seems a bit quick, so it was a little scary. All in all, it was a huge downer. I guess that's just how it has to be the first time. There is nothing good about the disease. What else could it be.
Miss is offline  
Old 05-19-2010, 10:39 PM #9
hjkangel's Avatar
hjkangel hjkangel is offline
New Member
 
Join Date: 2010
City: Atkinson
State: NH
Country: US
Diagnosed: 03/2010
Interest: I am a family member of someone with ALS/MND.
Posts: 29
hjkangel is on a distinguished road
hjkangel hjkangel is offline
New Member
hjkangel's Avatar
Join Date: 2010
City: Atkinson
State: NH
Country: US
Diagnosed: 03/2010
Interest: I am a family member of someone with ALS/MND.
Posts: 29
hjkangel is on a distinguished road
Post Re: What can I expect?

Yup, the clinic visits are depressing since they determine how bad the PALS is doing and how fast it is progressing. My Dad's doc at Lahey in Mass is wonderful, however. My Dad was diagnosed in March. He had some hand weakness in Jan after being out snowblowing. He now has about 10% use of one hand remaining, can barely walk and has lost an enormous amt of wgt. He was always so active too, walking rowing mountainbiking, swimming and more recently kayaking. Now he can do nothing. It all happened SO QUICKLY. The disease is cruel & devastating, but the good thing is that we're not alone here. Blessings to you and your husband. Glad you are here.
hjkangel is offline  
Old 05-19-2010, 11:49 PM #10
Miss's Avatar
Miss Miss is offline
Very Helpful Member
 
Join Date: 2010
City: Way Down South
State: In the Land of Cotton
Country: US
Diagnosed: 04/2010
Interest: I lost a loved one to ALS/MND.
Posts: 1,757
Miss is on a distinguished road
Miss Miss is offline
Very Helpful Member
Miss's Avatar
Join Date: 2010
City: Way Down South
State: In the Land of Cotton
Country: US
Diagnosed: 04/2010
Interest: I lost a loved one to ALS/MND.
Posts: 1,757
Miss is on a distinguished road
Default Re: What can I expect?

HJKangel,

Your Dads progress sounds alot like my husbands. Very, very quick. Very, very scary. We are praying that we hit a plateau quickly.
Miss is offline  
Old 05-20-2010, 12:01 AM #11
sadiemae's Avatar
sadiemae sadiemae is offline
Extremely Helpful Member
 
Join Date: 2009
City: Reno
State: NV
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 2,397
sadiemae is on a very distinguished road
sadiemae sadiemae is offline
Extremely Helpful Member
sadiemae's Avatar
Join Date: 2009
City: Reno
State: NV
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 2,397
sadiemae is on a very distinguished road
Default Re: What can I expect?

Missy and Angel, Get the PEG (feeding tube) ASAP. Even if you do not use it right away DO IT NOW. PM me if you have any questions. HUGS Lori
sadiemae is offline  
Old 05-20-2010, 10:55 AM #12
indigosd's Avatar
indigosd indigosd is offline
Very Helpful Member
 
Join Date: 2009
City: RURAL
State: oz
Country: oz
Diagnosed: 07/2009
Interest: I lost a loved one to ALS/MND.
Posts: 1,784
indigosd is an unknown quantity at this point
indigosd indigosd is offline
Very Helpful Member
indigosd's Avatar
Join Date: 2009
City: RURAL
State: oz
Country: oz
Diagnosed: 07/2009
Interest: I lost a loved one to ALS/MND.
Posts: 1,784
indigosd is an unknown quantity at this point
Default Re: What can I expect?

Ditto! Get the PEG ASAP! I wonder why he is on CPaP? Get him off of that and on BiPap ASAP. Mare, EXCELLENT advice and resources as usual [giving you a virtual hug] Phil's wife, Missy, djgators1, Linda and Heather; WELCOME! Web has been doing a steady decline with some plateau's. He is still able to walk and participate in living his life with some limitations. My hope and prayer is that we stay on this plateau for a very long time and when the time comes that the end will be rapid and swift. Does that osund harsh? I do not mean it that way at all. My sweet husband loathes pain, is very much a private person [modest], extremely claustrophobic and has defined himself all of his life by being active and doing. This is very difficult for him [for us] and we know that there is a host of angels that will hold him close and fly him to the next life. :] He is soul looking forward to see his Momma again. xoxoxo
indigosd is offline  
Old 05-20-2010, 11:09 AM #13
mare's Avatar
mare mare is offline
Senior Member
 
Join Date: 2008
City: Lafayette Hill
State: PA
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 762
mare is on a distinguished road
mare mare is offline
Senior Member
mare's Avatar
Join Date: 2008
City: Lafayette Hill
State: PA
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 762
mare is on a distinguished road
Default Re: What can I expect?

djgators1-

And thanks for your book tip "Respiratory Management of ALS".
Looked at the table of contents online at amazon and it does look comprehensive- the most info I've seen on respiratory issues.

Just forwarded it to a friend who is dealing with respiratory problems now.
mare is offline  
Old 05-20-2010, 11:09 AM #14
BrianD BrianD is offline
Member
 
Join Date: 2009
City: Colorado Springs
State: Colorado
Country: US
Diagnosed: 08/2009
Interest: I have been diagnosed with ALS.
Posts: 404
BrianD is on a distinguished road
BrianD BrianD is offline
Member
Join Date: 2009
City: Colorado Springs
State: Colorado
Country: US
Diagnosed: 08/2009
Interest: I have been diagnosed with ALS.
Posts: 404
BrianD is on a distinguished road
Default Re: What can I expect?

Ditto on the PEG and BiPap.

Missy... please do some research on/ask about the CPAP for ALS. Information I had read at some point indicated CPAP was bad for ALS because it provides a constant pressure in one direction, which makes it harder for either the diaphragm or the chest muscles to work against that pressure.

My neurologist said Medicare kicks in to covering BiPap at 50% FVC... so I think you may be there now.

Brian
BrianD is offline  
Old 05-20-2010, 05:53 PM #15
Miss's Avatar
Miss Miss is offline
Very Helpful Member
 
Join Date: 2010
City: Way Down South
State: In the Land of Cotton
Country: US
Diagnosed: 04/2010
Interest: I lost a loved one to ALS/MND.
Posts: 1,757
Miss is on a distinguished road
Miss Miss is offline
Very Helpful Member
Miss's Avatar
Join Date: 2010
City: Way Down South
State: In the Land of Cotton
Country: US
Diagnosed: 04/2010
Interest: I lost a loved one to ALS/MND.
Posts: 1,757
Miss is on a distinguished road
Default Re: What can I expect?

We are heading to a pulmonologist on 5/28. We are still on private insurance, so hopefully it will be covered completely. Needless to say, we have met every deductible!
Miss is offline  
Closed Thread

Tags
als, breathing, caregiver, clinic, disability, eating, insurance, long term disability, manual, research, ssdi


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
What to expect from here? Penelope General Discussion About ALS/MND 10 02-23-2015 04:02 PM
What can I expect? Epsteinroberta General Discussion About ALS/MND 8 06-12-2013 02:30 AM
Please Help. I don't know what to expect. pgatto People With ALS - "PALS" 8 11-05-2012 07:50 PM
what can i expect? Diana4 General Discussion About ALS/MND 4 07-11-2011 05:46 PM
What to expect jazzyfan001 General Discussions About PBP 9 06-02-2011 01:23 PM
What to expect at clinic? arobertson General Discussion About ALS/MND 7 12-01-2010 10:51 PM
What to expect? nora General Discussion About ALS/MND 7 08-05-2009 08:45 AM
what should we expect? beccag Current Caregivers (CALS) 5 10-03-2008 10:18 PM
What to expect? shiningsmile Current Caregivers (CALS) 8 08-27-2008 12:15 AM
What can I expect? 13fishfan Current Caregivers (CALS) 11 12-20-2006 10:42 PM


All times are GMT -5. The time now is 06:53 PM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016