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Manhattanite

Distinguished member
Joined
May 10, 2015
Messages
209
Reason
Lost a loved one
Diagnosis
05/2015
Country
US
State
NY
City
New York
Well, today we had the second opinion and the specialist confirmed the PBP diagnosis. It is what I expected given the symptoms. Honestly I have no tears left and I feel sort of numb although seeing my partner suffer is unbearably painful.

We have a third opinion next week but at this point it is more about choosing the ALS clinic where he feels more at ease.

It is strange to know what the stages of the disease will be -- like having an itinerary for a trip not knowing when you will reach each destination.
 
I'm sorry for the confirmation. I know how difficult it is to know for sure what you are facing. Draw close together the best way you can!
 
So sorry for you both, but as everyone says...one day at a time. Concentrate on the good things, your upcoming wedding for example.
God bless, Janelle x
 
>It is strange to know what the stages of the disease will be

I do know it is healthier to be thankful for what still works than to resent what doesn't

(easier said than done :))

also remember the rules:
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#1 don't fall
#2 don't hang around sick people, at 1st sign of respiratory issue go to doc
#3 conserve energy, rest, never push it, try to relax
#4 stay warm
#5 take vitamins
#6 power off pwc when not driving and Don't ram wheelchair into immovable objects

ALS is about living, not dying!
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ok well, we take what we get and be glad for what we have :)
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If you have not yet, go to youtube and search "ALS ABC" and watch all 3. I sent those to

friends and family, too.

Try to go with the flow, expect fear, anger, bitterness, and a new awareness of life. I have

found that being active here on

everyone progresses differently, so don't plan for 'stage' -- take it as it comes.

find good thoughts to shift when the bad thoughts slide in ...

Max

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Thank you for the words of support and advice. In this the early stage of the disease I still have trouble accepting what is happening while knowing that what will happen is inevitable. So many contradictions.
 
Please look into banking his voice ASAP. If I had known what was happening to me before my voice was too far gone to bank I would have done it. Now it's too late! My husband misses my voice. I can manage to squeak out an I Love You but that's about it. It's been 16 months since my symptoms appeared and 5-6 months into it where I had to work really hard to be understood. The more I talked the more tired I became.

QiGong is helpful
Sending you peace & calm, KatB
 
Greetings and welcome.
 
KatB, yes, I have been thinking of this and started looking into voice banking. Thank you for the reminder!
 
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