Old 03-15-2008, 05:56 AM #1
pfowler44 pfowler44 is offline
New Member
 
Join Date: 2007
City: Elkhart
State: Indiana
Country: US
Interest: I have been diagnosed with ALS.
Posts: 19
pfowler44 is on a distinguished road
pfowler44 pfowler44 is offline
New Member
Join Date: 2007
City: Elkhart
State: Indiana
Country: US
Interest: I have been diagnosed with ALS.
Posts: 19
pfowler44 is on a distinguished road
Default New study at UM

Hello everyone, It has been a long time since I have been here. I thought I might just update on my husbands condition and let you know what he has been doing for ALS research. He has familial ALS and 4 of the studys he is in has to do with that. The newest study he is doing is at the Unversity of Michigan, Ann Arbor, to study the effects of ALS and dementia. He went in January for his first MRI and then two week after that. His next MRI is in April and he goes every three months for an MRI. It is a blind study so he doen't get any results but they have told him that they have gotten alot of good info from his brain. lol. We already knew that he has a high IQ but they said they could tell that from the MRI. I guess the way they conduct the study tells them that. When he is in the MRI machine he is there for about 2 to 2 1/2 hours and they have him do things like read (they put a mirror in the machine) and do verbal and non verbal tests. We are excited about this study because we have noticed some cognitive changes in the last year or so we used to attribute to just normal aging. They are having some trouble getting others in the study. Fortunatly Bob was diagnosed early and he does have some time to do this study for them. Now about Bob. He is doing good. Is still having alot of pain but is off the Lyrica because it make him to doped up. He takes Motrin for pain. It doesn't alway help but that is what he wants to do for now. He is still getting around good too. He was also diagnosed with diabetes and I am sure there is some neuropathys going on which is very painful. I was reading some of the post referring to ALS and Diabetes and that was interesting to me. Bob's third cousin who has since passed from ALS a few years ago was in constant pain and I often wonder now did he have diabetes too. There doesn't seem to be a history of diabetes in his family anywhere. But I am still researching that. Have still only found 8 other family members of his that where diagnosed with ALS but the long lineage of stories is quit interesting to say the least. I have documentation of symptoms of ALS in his family dating back to the early 1800s. Have pictures too. Well I guess this was a book so I better go now. One question though to the mods. I have written a small paper on Bob's family history and would like to post it here in the near future. Is that allowed?
Thanks for listening Sincerely Pat
pfowler44 is offline  
Old 03-15-2008, 02:12 PM #2
Al's Avatar
♥ Al Al is offline
Moderator
Forum Moderator
 
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Interest: I have been diagnosed with ALS.
Posts: 7,967
Al is on a distinguished road
♥ Al Al is offline
Moderator
Forum Moderator

Al's Avatar
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Interest: I have been diagnosed with ALS.
Posts: 7,967
Al is on a distinguished road
Default

Hi Pat. How small is the paper? I'm not sure if we have size limits to posts but it may be interesting to some of us.
AL.
Al is offline  
Old 03-15-2008, 02:54 PM #3
brooksea brooksea is offline
Extremely Helpful Member
 
Join Date: 2006
Country: HM
Interest: Other
Posts: 5,172
brooksea is on a very distinguished road
brooksea brooksea is offline
Extremely Helpful Member
Join Date: 2006
Country: HM
Interest: Other
Posts: 5,172
brooksea is on a very distinguished road
Default

How about blogging?

Last edited by brooksea : 03-15-2008 at 02:57 PM Reason: duh
brooksea is offline  
Old 03-15-2008, 10:04 PM #4
hearts_and_thoughts hearts_and_thoughts is offline
New Member
 
Join Date: 2008
City: Burton
State: OH
Country: US
Interest: I am a caregiver for someone with ALS/MND.
Posts: 56
hearts_and_thoughts is on a distinguished road
hearts_and_thoughts hearts_and_thoughts is offline
New Member
Join Date: 2008
City: Burton
State: OH
Country: US
Interest: I am a caregiver for someone with ALS/MND.
Posts: 56
hearts_and_thoughts is on a distinguished road
Default

That is quite interesting about that study. My brother was diagnosed in the VA at Ann Arbor and I believe my brother has frontal temporal dementia. He doesn't want any involvement with research now but says that he will allow an autopsy if there is a purpose. We have familial ALS also. I wouldn't mind having an e-mail address of someone from the study team so that I could contact them though. Can you help me with that?

Mary Jo
hearts_and_thoughts is offline  
Old 03-15-2008, 11:48 PM #5
Al's Avatar
♥ Al Al is offline
Moderator
Forum Moderator
 
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Interest: I have been diagnosed with ALS.
Posts: 7,967
Al is on a distinguished road
♥ Al Al is offline
Moderator
Forum Moderator

Al's Avatar
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Interest: I have been diagnosed with ALS.
Posts: 7,967
Al is on a distinguished road
Default

Boy are you smart CJ. Pat could put everything on her own blog here.
AL.
Al is offline  
Old 03-16-2008, 06:34 PM #6
brooksea brooksea is offline
Extremely Helpful Member
 
Join Date: 2006
Country: HM
Interest: Other
Posts: 5,172
brooksea is on a very distinguished road
brooksea brooksea is offline
Extremely Helpful Member
Join Date: 2006
Country: HM
Interest: Other
Posts: 5,172
brooksea is on a very distinguished road
Default

LOL! AL, Tell my husband that!
brooksea is offline  
Old 03-16-2008, 11:32 PM #7
Lorie's Avatar
Lorie Lorie is offline
Senior Member
 
Join Date: 2007
City: Mobile
State: Alabama
Country: Uni
Interest: I am a family member of someone with ALS/MND.
Posts: 546
Lorie is on a distinguished road
Lorie Lorie is offline
Senior Member
Lorie's Avatar
Join Date: 2007
City: Mobile
State: Alabama
Country: Uni
Interest: I am a family member of someone with ALS/MND.
Posts: 546
Lorie is on a distinguished road
Default Pat

Very Interesting. I will watch for your Blog. I would love to read about it and see the pictures.

Lorie
Lorie is offline  
Old 03-23-2008, 01:11 PM #8
pfowler44 pfowler44 is offline
New Member
 
Join Date: 2007
City: Elkhart
State: Indiana
Country: US
Interest: I have been diagnosed with ALS.
Posts: 19
pfowler44 is on a distinguished road
pfowler44 pfowler44 is offline
New Member
Join Date: 2007
City: Elkhart
State: Indiana
Country: US
Interest: I have been diagnosed with ALS.
Posts: 19
pfowler44 is on a distinguished road
Default

Wow I didn't expect to get this many responses. As soon as I figure out this blog thing I will post my story. The Dr in Ann Arbor that is doing the study is Dr Robert Welsh. I would think if you called the University of Michigan they could put you in touch with Dr Welsh. He contacted us by mail because my husband goes to the ALS clinic there.
Thanks for all the feedback and I will post my story in blog after I get my grandaughter to help me out. Lots of Love and warmth on this fine Easter day. Pat
pfowler44 is offline  
Closed Thread

Tags
als, als research, back, book, brain, dementia, diabetes, diagnosed, early, familial, familial als, family, family history, hours, info, mri, pain, reading, research, symptoms, symptoms of als, tests, update


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
B-12 Study BlueandGold ALS Drug Trials 62 11-07-2015 09:19 PM
PLS study Nikki J General Discussion About PLS 15 08-22-2015 11:09 PM
Lunasin Study,Anti-Epilectic Drug Study, BioMarker Study maryhahnward ALS Research News 6 01-23-2015 06:56 AM
New clinical study (als) sazzlah ALS Drug Trials 2 03-03-2014 05:53 PM
PLS study at NIH Nikki J General Discussion About PLS 4 02-16-2014 08:17 AM
Biomarker Study momap53 ALS Research News 2 02-03-2012 03:48 PM
Biomarker study... TedH5 ALS Drug Trials 0 01-23-2012 01:22 PM
Dexpamipexole Study Bhappy ALS Drug Trials 13 08-19-2011 09:53 PM
COQ 10 study being released LindaB Welcome New Members - Say Hello 2 04-05-2008 04:36 PM


All times are GMT -5. The time now is 07:03 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