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kcp65

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Mar 5, 2008
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11
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Loved one DX
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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.
 

hopingforthebest

Distinguished member
Joined
Feb 20, 2007
Messages
355
Diagnosis
02/2007
Country
US
State
NJ
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
 

CindyM

Extremely helpful member
Joined
Sep 17, 2006
Messages
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Reason
Learn about ALS
Country
US
State
New England
You can always come to us. People here have a wealth of experience and "get" this disease and all aspects of it!
 

kcp65

Member
Joined
Mar 5, 2008
Messages
11
Reason
Loved one DX
Country
US
State
CA
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

Member
Joined
Mar 5, 2008
Messages
11
Reason
Loved one DX
Country
US
State
CA
You can always come to us. People here have a wealth of experience and "get" this disease and all aspects of it!
Thanks, Cindy! :-D I will take you up on that.
 

kcp65

Member
Joined
Mar 5, 2008
Messages
11
Reason
Loved one DX
Country
US
State
CA
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/DeathNotices.asp?Page=LifeStory&PersonId=123836188

I will hold my dad in my heart forever.

Thanks to all of you here for just being there.
Kay
 

hopingforthebest

Distinguished member
Joined
Feb 20, 2007
Messages
355
Diagnosis
02/2007
Country
US
State
NJ
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
 
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