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duplinwino

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Mar 14, 2007
Messages
101
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Loved one DX
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US
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NC
City
Pittsboro
Hi :-D I found this forum searching for articles on PMA (I didn't find too many).

My husband is 31 years old, we will be married 10 years this year and have a seven year old daughter. In August/September 2006, he started noticing loss of strength in his right thumb and a "mushy feeling" in the thenar muscles of his hand. We kind of blew it off; he works as a mechanic and uses his hands all day, so thought it may be something nerve related. I mentioned his symptoms to a neurologist at the hospital I work for and he felt the same and deferred us to a hand clinic. We didn't go.

By October, his entire grip was weaker in his right hand and we noticed definite atrophy of his triceps muscle of his right arm. I will never forget the day he stood in front of me and said "Look at this". He could barely raise up on his right toes or flex back on his heel. I got him in for an appointment immediately (it pays to work with the neurologists I guess).

He went thru an EMG/NCVS (4 hours worth), tons of blood work, urine tests, etc. The EMG was abnormal and all the blood work came back negative. The only oddity is that all of his symptoms and findings are right sided only ("asymmetrical with patchy distribution"). He was given the diagnosis of motor neuron disease and we were told to prepare for the worst. Ok, wel, that WAS the worst. We were in total disbelief and frustrated with everything we read, that everyone progresses differently and no one can tell you what will happen next, etc. etc. etc.

We went last month for a second opinion at an ALS Center. They did another EMG which was consistent with the first. We were told he has predominately lower motor neuron signs with no upper motor signs (he did have two abnormal reflexes) - so here we are with a diagnosis of PMA. His respiratory function test was 93% (?)

His weakness/wasting has continued to progress in his hand, arm and shoulder (only on the right side) and he does most tasks with his left. His leg has gotten weaker and two weeks ago he turned his ankle in the yard and fractured his leg in two places (fibula). I'm afraid this is a setback for him, because any healthy 31 year old's muscle will atrophy being casted for 6 weeks... but I'm afraid what he loses, he won't get back and we'll be looking at a brace sooner rather than later. (We tried to talk with ortho about an electrical stimulator for those muscles but we got a deer in the headlights look. We go back in two weeks for (hopefully) an air cast and plan to discuss this again.

Anyway, I'm glad I found this place. I hope to learn a great deal talking with all of you (especially if there is anyone with stubborn/hard headed spouses!)

Ashley
 

Al

Moderator emeritus
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7,960
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Country
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On
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NW of Toronto
Hi Ashley. We have lots of self professed stubborn spouses here. Sorry for your husband's diagnosis. Good idea that you got into an ALS center right away. Not that they are going to be able to do anything cure wise but they should be able to offer more in symptom management than the average Neuro that doesn't see a lot of these cases can. Welcome aboard. It's a bumpy ride. Ask any questions you need.
AL.
 

duplinwino

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Joined
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101
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Loved one DX
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Pittsboro
Thanks Al! (Hey, we have the same birthday!) I did find the ALS Center very helpful and extremely proactive - rather than "prepare for the worst" it was "prepare for the best life possible". We were very pleased. I would suggest a multi-disciplinary center like that to anyone. We saw 10 specialists all in one visit.

Has anyone experienced/heard of an asymmetrical start to this disease?

Thanks again,

Ashley
 

zac111

Distinguished member
Joined
Jan 14, 2007
Messages
175
Reason
PALS
Country
US
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al
City
mobile
Hi Ashley What Were The Abnormal Reflexes?
 

duplinwino

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Joined
Mar 14, 2007
Messages
101
Reason
Loved one DX
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Finger jerk was absent on the right and "slightly asymmetric brachial radialis reflex with some distal spread" - not sure what that latter finding means.

Ashley
 

CindyM

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Hello Ashley- glad you found us but sorry you have to be here. I am still waiting a DX but from what I have seen it comes as a real kick in the pants. Sounds like you are doing all the right things, though, by learning all you can and keeping an up beat attitude. How's hubby responding to all this? Cindy
 

thomkat

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Jan 25, 2007
Messages
21
Reason
CALS
Country
US
State
NC
City
Wilmington
Response to Ashely & I'm a newbie too!

Hi everyone-

I wanted to respond to Ashley, but also introduce myself to the group.
(Where are you in NC? I'm in Wilmington!)

Here's my story:

My husband first had symptoms only on his Left side...left hand and left leg weakness and some twitching.

He was diagnosed with ALS in 2005 after many months of chiropractic and orthopedic care for pinched nerve and other ailments. He now has no use of his arms or hands and very limited movement in his legs. He is in his power chair 24/7, even prefers to sleep in it. (Well I use the word sleep loosely...he really doesn't do very much of that!) His breathing is OK, a little less than 70%. We have a bi-pap but he finds it uncomfortable. We got the feeding tube in October 2006, but only used it for his meds until about a month ago. But his choking episodes got worse and worse and it would take him longer to "get over them". It was horrible to watch. Finally, he asked me to just put it in the tube. Now he receives all of his nutrition through the tube. But he did not want to use any of the "formulas" i.e. Ensure, Boost, etc. I generally cook beef, chicken, fish, etc. and combine with organic vegetables. We ordered the Vita-Mix blender (which I jokingly say can liquify pine trees!) So it purees everything so I can put it through the tube.

I am his caregiver and have given up my job to take care of him. Sometimes I am overwhelmed. We have two kids - 14 year old girl and 12 year old boy. They are great, but I worry about everything they are having to "watch". This was the Dad who took us on great vacations... swimming, snorkeling, white water rafting, hiking and the Dad that played basketball with them in the driveway everyday when he got home from work...needless to say, their world got turned upside down. Would love to hear how others are dealing with their kids.

Thanks to all you dedicated responders who help us deal with what's been thrown our way.

Kathy
 

sufernan

Active member
Joined
Sep 11, 2006
Messages
66
Reason
Lost a loved one
Country
CA
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Ontario
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Toronto
Kids

Hello Kathy!
My son is only 2 1/2 so it is really hard to know how all this has affected him. I do not know where you are, but in Toronto where I live there are grieving groups for teenagers and kids that are very helpfully. It is good for kids to talk to other people their age that are also grieving. I know that caregivers that are also moms and dads have to worry about the impact of this road on their children. This is very hard! I wish there was more support out there for family ...
My best from my family to yours.
Sunny
 

duplinwino

Distinguished member
Joined
Mar 14, 2007
Messages
101
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Loved one DX
Diagnosis
N/A
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US
State
NC
City
Pittsboro
Cindy, I don't think my husband has quite accepted it yet. I think he hopes there's another answer or another diagnosis somewhere along the way. He has always been a very independent, capable person. He's not one to ask for help, people come to him for help... so this is tough for him.

Kathy, I'm outside of Chapel Hill. I wish I knew an answer regarding your kids. Our child is still young (seven) and we haven't explained anything to her yet, at all. She wouldn't understand and my husband still functions fairly well.

Thanks again everyone,

Ashley
 

CindyM

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Learn about ALS
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New England
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Anytown
Hi Ashley. Don't worry about acceptance. It will come in its own good time. I figure there can't really be any right or wrong way to deal with all this, as everyone has to find their own path.

Kathy - someone else on a previous thread talked about how much information to give to older kids and when to give it. I think it was Liz.

Liz - Hey girl - are you around cyperspace these days? We're talking about you in case your ears are burning! Hugs, Cindy
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
City
Albany
Yeah, I'm here.

I sure wouldn't presume to tell other people how to handle telling their kids about their ALS diagnosis. We still haven't told our kids (ages 8, 11, 13, and 15) my exact diagnosis because we don't want them surfing the net and getting their information there. And in this day and age, that would be unavoidable. They know I have neurological problems that will get progressively worse but we haven't addressed the mortality issue yet. We think it's premature to start them dreading my demise. I haven't the slightest idea what the experts would say to our approach since I didn't consult them. This is working for us for now.

Liz
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Liz. I'm sure that you've been around long enough to know that the "experts" don't have all the answers either so trust your instincts. Like ALS we are all different and our approaches should be tailored to our families, not what some "expert" says is right.
AL.
 

JACKIEMAX

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Joined
Jan 22, 2007
Messages
159
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US
State
TN
City
Baxter
what to tell kids about als...

my husband has als and was only diagnosed after we left CA and moved to TN; therefore his adult children and grandchildren have not seen him other than the healthy specimen he was the last time they saw him.

now, they are planning to come visit next month, and although i have e-mailed his daughters and told them exactly what was going on with him, they are going to be very shocked to see the dad they love so dearly walk with tiny baby steps and only with the use of a walking stick or cane, and look so thin and pale.

this is a monster disease, and i feel for all the caregivers in this forum. we are not the ones suffering from the disease, but we love our spouses dearly, and it is painful to watch them lose ground and suffer.

jackiemax
 

quadbliss

Distinguished member
Joined
Dec 12, 2006
Messages
392
Reason
PALS
Diagnosis
07/1998
Country
US
State
California
City
Benicia
I think it is often harder for the spouse than the PALS. The PALS is usually free to withdraw as deep into their own thoughts or constructed reality as they wish. The loved one has to some how keep one foot in the everyday world, while trying to mentally balance this with the striking reality of what is happening in their home.

Mike
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
I agree I have ALS but my husband crys way more then I do and it breaks my heart I wish I didnt have to do this to him We had so many plans and now they are just dreams.Pat
 
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