My husband diagnosised with PLS

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Geo

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Joined
Aug 24, 2007
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500
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DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
Hello APC i am a patient PLS do the tests show bad EMG ,NCV, ETC ETC if hes been given a Diag . Of PLS why the Feeling of ALS . What does the Doctor base his assumption On ? What ever you do ,DO NOT GO TO THE BANK BASED ON A DOCTORS ASSUMPTIONS . I was told i would be dead in 2 years based on an assumption a doctor had . Have him squeeze your hands and feel, if you think hes weaker or just stiffness .
No one knows his strength better than you . I have a great deal of stiffness and clumsiness . Have him stick the tongue out and look at it for a lumpy look . Look at his bulkness in the muscle . I had alot of depression and crying i do not anylonger i have gotten tougher . If you need you can PM me anytime . i will tell you my horror story .im Bulbar also ,i started Bulbar . Dont worry im here to share with you so you will not (maybe )go through the HELL ive been through . I'll look forward to hear from you . God Bless Geo
 

APC

Member
Joined
Apr 29, 2007
Messages
29
Reason
Loved one DX
Diagnosis
1/2008
Country
US
State
Ohio
City
Lima
Pick your brain

Hey Al, Can you tell me what form of neuro px your dealing with? ALS? My husband has had all of the prelim testing done, except spinal tap. Is this necessary to make a definitive diagnosed? I want to make sure I get all of the information I need to ask good questions and what to look for in my husbands condition. Thanks any suggestions are welcome!
 

APC

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Joined
Apr 29, 2007
Messages
29
Reason
Loved one DX
Diagnosis
1/2008
Country
US
State
Ohio
City
Lima
Husband with PLS

Hey Geo. The EMG showed initially no ALS. That was in our hometown neurologist. He could.t determine why he was having fasicultions.Cleveland Clinic also did EMG, noconclusive evidence of ALS. Then off to OSU in Columbus. The dr. is an ALS specialist. He did 2 EMG's,one of which he did himself. I try not to bank on the dr. assumptions. I really put my trust in God!
Geo, would you mind telling me your age now and the onset of your illness? As for the clusiness... I do see more unsteady gait. He has fallen a few times this week alone. We live in Ohio and the snow is starting to fly. I really worry about his safety. I don't want to mother him, but there are times when the nurse part of me kicks in and I want to do what I think is right. I really try to leave many aspects of his care up to him. That's very important to his well being. I work with patients who have no control over their care and I don't want that to happen to him.
Any suggestions are greatly appreciated. Looking forward to hearing from you. Without sounding stupid... you said I could PM you.. What's that? Thanks APC
 

Al

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Joined
May 25, 2004
Messages
8,083
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi APC. I have an ALS diagnosed. Possibly one of the weird variants my Neuro tells me. The spinal tap rules out other illnesses that have similarities to ALS. PM is private messaging which you will be allowed to do after posting a certain number of postings. This is done to stop the spammers from joining and dumping porn etc here. It takes too much of their time to multiple post.
 

Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
Well ,as for symptoms istarted as Bulbar meaning of the tongue (speech swallowing etc etc ) i began symptoms as of Dec. 2000 i was 55 at the time ,im now 62 . We lived in Peoria Ill. i realized with stairs and cold weather and all ,i would problably end up and break my neck falling down them so we sold and moved to Florida . Normally PLS starts in the Legs then the Bulbar . My balance is not good i use a quad cane . Its only normal for a wife to want to help her husband ,Connie does the same and i tell her . My Theory is if you treat someone like an Invalid they will be one .I want my independence as long as i can . Like i told a neighbor who hovered over me . I said if i fall and hold my hand out ,reach out to help me up until then DON'T HOVER . When you hover you take their pride away . We have several Nurses that live here and of course everybody is an Expert .Truth be known ,theres only one expert on this disease .The Patient .I had Fasics at first but none anymore ,i still get cramps once in a while ,mostly when i lay down to sleep , none during the day . I have Spyware and Lots of Antivirus so write me at [email protected]
 

Stephanie

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Joined
Nov 4, 2007
Messages
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Loved one DX
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US
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Alabama
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Daphne
Feeling bad...

So my sister is on the waiting list to get induced either today or tomorrow. While this should be exciting...I'm feeling very down right now b/c my mom flew up today to go stay until Christmas Eve, and I'm flying up Thursday and staying until Christmas day...and so that means my dad will be alone for several days. This worries me w/ his mindset...I feel guilty. My mom and I didn't plan to both be gone at the same time...but I had to go up during Christmas b/c I don't have many vacation days so I need to use the few holidays we get off work....and my mother really wanted to be there for the birth since she missed the first one...so once she heard the plans to induce...she booked a flight. I'm happy my mom gets to be there and happy I get to go up in a few days...but feel horribly guilty right now for leaving my dad alone. He has his first memory test today to top it all off...and they told him it could last all day...so now he's forced to sit and think about his situation. Just needed to vent....
 

Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
Stephanie ,you see what your doing ,your thinking he is incapable ? Whats he say ? Problably ,go . If you really feel that bad then stay . Making hard decisions ,thats what lifes about . You either feel hes incapable of taking care of himself or you feel you'll miss something . I personally feel your mother being there is fine
its not like she cant do it without you . Priorities , how would you feel being left by yourself ?My wife flies up north to see our grandaughter . Ask Your Dad what he thinks . Geo
 

Stephanie

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Joined
Nov 4, 2007
Messages
25
Reason
Loved one DX
Country
US
State
Alabama
City
Daphne
Not quite...

I DO NOT think my father is incapable, I know he can take care of himself...I just think w/ him being down...and the time he'll be sitting around by himself, that is just more time for him to think about his condition and be down about it. I'm not worried about his physical capabilities...I'm worried about his mental state right now....and he will be here w/o my mother or me. This whole thing is still new to us, and to him....it's not like he's had this disease, or known he's had it for forever and I'm scared to leave town, he just got this diagnosis and it is STILL all setting in. I'm still going up to see my new nephew...but I just don't like my father being left here alone. God forgive me if that is such a horrible thing!
 

CathyAmanda

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Joined
Nov 26, 2007
Messages
17
Reason
Friend was DX
Country
AUS
State
South Australia
City
Adelaide
Hi Stephanie,

Just found your mums thread..........I understand exactly where you are coming from my dear friend has been diagnosed with ALS for about a month now......Whilst she is very accepting AT THE MOMENT Who knows in these early stages what they really are feeling you are right to feel concerned about your Dad..........Guilt on the other hand is a horrible useless emotion...... I am sure he will be OK he may even need sometime when he doesnt have to put on an act for you all......As sweet as it is that they feel the need to do this for us I think it makes us worry more...........Your Dad will ultimately be worrying about the effect his disease will have on your Mum and you "Kids" as much as himself and may even be suffering his own guilt to "put you through this" so to speak. Maybe sometime to himself will help.......He can always call you all.

Take Care and Enjoy your nephew New babies you could just Gobble them Up Yum. They are beautiful.
 

CindyM

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Learn about ALS
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New England
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Anytown
Hi Stephanie, by now you are probably holding anew baby nephew. Such fun! I hope all goes well with the trip and I hope all goes well for Dad, too. Cindy
 

Stephanie

Member
Joined
Nov 4, 2007
Messages
25
Reason
Loved one DX
Country
US
State
Alabama
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Daphne
Thank you...

for your positive feedback! My nephew has arrived...and my neice is a tad bit jealous...haha...but they are both precious! It's nice being away...and I'm keeping my dad up to date w/ pictures! I hope ya'll have wonderful holidays!
 

CindyM

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And you and yours, as well, Stephanie!
 
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