Old 07-01-2008, 12:06 AM #1 (permalink)
New Member
 
Join Date: 2008
City: San Francisco
State: CA
Country: US
Interest: I am a family member of someone with ALS/MND.
Posts: 11
kcp65 is on a distinguished road
kcp65 kcp65 is offline
New Member
Join Date: 2008
City: San Francisco
State: CA
Country: US
Interest: I am a family member of someone with ALS/MND.
Posts: 11
kcp65 is on a distinguished road
Default Dad with PMA

Hello, all,

My father was diagnosed with PMA about ten months ago. He turned 70 in March. It is rapidly progressing, unfortunately. Over the past few months, he has lost most of the muscle mass in his arms and legs along with about 40 pounds, and has terrible shortness of breath. He's on oxygen at night, and sleeps in a recliner because he can no longer lie flat. He's still walking, but can't make it very far without having to rest.

There have been so many shocks over the past year: First, hearing the words "suggestive of ALS," then being told it wasn't ALS and the relief over that, then realizing that PMA is taking its toll fairly rapidly, anyway. And, of course, the fear that this is genetic. My great grandfather was apparently very weak and frail towards the end of his life. He was never diagnosed with PMA (or anything else), but it makes us wonder.

Any suggestions on how you all cope, and if there's any way to encourage my father, would be really appreciated.

As to my situation: I'm 43, married with no kids (no regrets over that! ), and live near my father. I see him at least once a week and during the summers, even more (I'm a teacher and am on summer vacation right now). He's married to his second wife and they have a sixteen-year-old daughter. I also have a brother near my own age whom I often turn to, but he has his own "stuff" to cope with and tends to be fairly matter-of-fact about my father's situation. My mother lives nearby as well but she's not exactly a fountain of support when it comes to her ex-husband. It's understandable in many ways, but it's sad that I can't go to her.

Enough about me.

Thanks for listening.
kcp65 is offline  
Old 07-01-2008, 11:09 PM #2 (permalink)
Member
 
Join Date: 2007
City: Mays Landing
State: NJ
Country: US
Diagnosed: 02/2007
Interest: He is home with Jesus 6/22/09
Posts: 355
hopingforthebest is on a distinguished road
hopingforthebest hopingforthebest is offline
Member
Join Date: 2007
City: Mays Landing
State: NJ
Country: US
Diagnosed: 02/2007
Interest: He is home with Jesus 6/22/09
Posts: 355
hopingforthebest is on a distinguished road
Default your Dad with PMA

Just wanted to give you what our ALS neuro told us. PMA is one the many classifications of ALS. But it is ALS. The thing that takes the ALS PMA patients is the breathing issues. The diaphram shuts down (as it is muscle that pushes the oxygen in our body).

We went to John Hopkins for second opinion and had blood work that showed my husbands PMA is not a genetic type that passes down. Maybe you can inquire with your Dad's ALS specialist. Get him to a ALS clinic at a leading university. They are wonderful!

Good luck and God bless,
Patty
hopingforthebest is offline  
Old 07-02-2008, 12:43 PM #3 (permalink)
Moderator
Forum Moderator
 
Join Date: 2006
City: Anytown
State: New England
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 3,564
CindyM is on a distinguished road
CindyM CindyM is offline
Moderator
Forum Moderator

Join Date: 2006
City: Anytown
State: New England
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 3,564
CindyM is on a distinguished road
Default

You can always come to us. People here have a wealth of experience and "get" this disease and all aspects of it!
CindyM is offline  
Old 07-03-2008, 03:46 PM #4 (permalink)
New Member
 
Join Date: 2008
City: San Francisco
State: CA
Country: US
Interest: I am a family member of someone with ALS/MND.
Posts: 11
kcp65 is on a distinguished road
kcp65 kcp65 is offline
New Member
Join Date: 2008
City: San Francisco
State: CA
Country: US
Interest: I am a family member of someone with ALS/MND.
Posts: 11
kcp65 is on a distinguished road
Default

Quote:
Originally Posted by hopingforthebest View Post
Just wanted to give you what our ALS neuro told us. PMA is one the many classifications of ALS. But it is ALS. The thing that takes the ALS PMA patients is the breathing issues. The diaphram shuts down (as it is muscle that pushes the oxygen in our body).

We went to John Hopkins for second opinion and had blood work that showed my husbands PMA is not a genetic type that passes down. Maybe you can inquire with your Dad's ALS specialist. Get him to a ALS clinic at a leading university. They are wonderful!

Good luck and God bless,
Patty
Thanks, Patty. We did have my dad at a university clinic (UCSF), but he is now being seen by a specialist in private practice. My understanding is that the test they can do to see if it is genetically passed down is for one kind of gene (SOD1?), which is only responsible for a percentage of cases. In other words, even if you test negative for that particular genetic defect, it isn't a "get out of jail free" card for people who have a history of the disease in their families.

I don't think there's any way of knowing in my family, since there's just the suspicion about my great grandfather. The good news is that none of my grandfather's siblings seem to have had the illness, nor have any of my father's siblings or cousins had it. It would seem to be an isolated case, but who knows.

I'm just trying to cope day by day.
kcp65 is offline  
Old 07-03-2008, 03:47 PM #5 (permalink)
New Member
 
Join Date: 2008
City: San Francisco
State: CA
Country: US
Interest: I am a family member of someone with ALS/MND.
Posts: 11
kcp65 is on a distinguished road
kcp65 kcp65 is offline
New Member
Join Date: 2008
City: San Francisco
State: CA
Country: US
Interest: I am a family member of someone with ALS/MND.
Posts: 11
kcp65 is on a distinguished road
Default

Quote:
Originally Posted by CindyM View Post
You can always come to us. People here have a wealth of experience and "get" this disease and all aspects of it!
Thanks, Cindy! I will take you up on that.
kcp65 is offline  
Old 02-11-2009, 02:29 AM #6 (permalink)
New Member
 
Join Date: 2008
City: San Francisco
State: CA
Country: US
Interest: I am a family member of someone with ALS/MND.
Posts: 11
kcp65 is on a distinguished road
kcp65 kcp65 is offline
New Member
Join Date: 2008
City: San Francisco
State: CA
Country: US
Interest: I am a family member of someone with ALS/MND.
Posts: 11
kcp65 is on a distinguished road
Default

We lost my dad to PMA this past Thursday, 2/5. I miss my best friend, but am thankful he is no longer suffering. The apparent cause of death was heart failure. He had a history of heart disease and a leaky valve, and combined with his PMA-induced breathing difficulties, the doctors believe his heart just gave out. We are grateful he went peacefully and quickly and before becoming completely incapacitated. It was bad enough to see him struggle as much as he did.

The obituary can be found here:

http://www.legacy.com/SFGate/DeathNo...onId=123836188

I will hold my dad in my heart forever.

Thanks to all of you here for just being there.
Kay
kcp65 is offline  
Old 02-11-2009, 08:18 PM #7 (permalink)
awieleba's Avatar
Very Helpful Member
 
Join Date: 2008
City: oakland twp
State: michigan
Country: US
Interest: seeing neuromuscular specialist for my issue's
Posts: 1,067
awieleba is on a distinguished road
awieleba awieleba is offline
Very Helpful Member
awieleba's Avatar
Join Date: 2008
City: oakland twp
State: michigan
Country: US
Interest: seeing neuromuscular specialist for my issue's
Posts: 1,067
awieleba is on a distinguished road
Default

bless you!
awieleba is offline  
Old 02-25-2009, 09:48 PM #8 (permalink)
Member
 
Join Date: 2007
City: Mays Landing
State: NJ
Country: US
Diagnosed: 02/2007
Interest: He is home with Jesus 6/22/09
Posts: 355
hopingforthebest is on a distinguished road
hopingforthebest hopingforthebest is offline
Member
Join Date: 2007
City: Mays Landing
State: NJ
Country: US
Diagnosed: 02/2007
Interest: He is home with Jesus 6/22/09
Posts: 355
hopingforthebest is on a distinguished road
Default

Remember all the good times! They will always make you smile.

God bless you and my your grieving time be surrounded by loving friends and family.

Patty
hopingforthebest is offline  
Closed Thread

Tags
als, brother, dad, diagnosed, father, fear, genetic, hearing, kids, life, muscle, night, oxygen, pma, sad, shortness of breath, support, vacation


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
Trackbacks are On
Pingbacks are On
Refbacks are Off


All times are GMT -5. The time now is 08:21 AM.

 

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