So scared

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HARD2BELIEVE

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PALS
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PA
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Hello - My father-in-law was diagnosed 4 weeks ago. We are still in shock, just hard to believe. My husband will be going with my in-laws next week to meet with his neurologist and a panel of others. Are there any questions that would be useful for us to ask based on anyone's experience at this Dr. visit?
 

hboyajian

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You may have already asked this at the previous appointment when the initial diagnosis was made, but one thing I wanted to know was what tests and assessments were done to determine the diagnosis and exactly what the results were. It reassured me to know that they had indeed ruled out every other possibility and the ALS diagnosis was correct even as emotionally painful as that must be.
It is my opinion that it is very important to have a pulmonary function test done frequently at regular intervals to determine if breathing assistance is needed. I would get that again even if it was done at your previous appointment.
There is no known cure, but there is a medication, called Rilutek, that has been shown to extend life expectancy by several months. I don't know the specifics on this (like what factors might cause a doctor to recommend it or not) because my father was not taking it. Others will know more. Ask if this medication would be appropriate. I had a whole list of possible supplements and medications I had researched on the net to ask about. I was informed that some were total quackery (like glyconutrients). Some medications on my list had not been shown scientifically to make a difference in the most recent studies done. The doctor should be up to date on all this research and can explain it to you. It is also possible for a patient to participate in medical research studies. If this is something your father-in-law is interested in it is worth finding out about. There is a study involving veterans that was mentioned in another thread.
Depending on how far the illness has progressed, and your father-in-law's specific needs, there are physical therapists, occupational therapists, speech therapists, etc. who can all help with different problems. Be sure to get all the referrals that are necessary and get the ball rolling.
If he is at the point of needing a walker or wheelchair or even close to it, get those prescriptions. It can take a while for some things to go through the system. Others happen more quickly.
One more thing, don't be shy to make another appointment right away if you find you have yet more questions after you go home. It is helpful if your doctor has a way to contact him or her (e-mail for example) to ask followup questions.
 

emjoi

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Lost a loved one
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Vic
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Though it isn't strictly in their field, get whatever info you can on Associations and other assistance that are in your area.
Grab whatever help is out there. Don't be shy about taking advantage of whatever freebies there might be around.
 

Al

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Joined
May 25, 2004
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7,960
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PALS
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10/2003
Country
CA
State
On
City
NW of Toronto
Hi Hard2believe. Sorry about your father in laws diagnosis. Have you registered with the ALSA or MDA if you're American or with the ALS Society provincial chapters if you're Canadian? There are other groups in other countries to contact for assistance if you live elsewhere. AL.
 

HARD2BELIEVE

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PALS
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US
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PA
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Pittsburgh
Thanks

Thank you all for responding. I swear we are going to wake up from this bad dream but the morning never comes. We have so many emotions going on...My husband and I just had a baby girl 4 months ago and its hard to even be happy for her milestones when we know that Joe (my father-in-law) will loose all that she gains. I also wondering if my husband will ever have this, though, there is no FALS that runds in the family and now my daughter.....

Its been about a year process with his diagnosis...EMG, muscle biopsies...finally he got to the best Specialist in our Pittsburgh Pa area. He is still walking with a cane and driving...though he is WEAK, that is the word of the year, WEAK..having a hard time writing but still going...

My sister in law and I have have been trying to contact our local ALS support group with no luck in getting a call back...I feel as though I am only functioning at 50%...meaning when I am 100% I will be better at researching a little more...

I must admit, though my in-laws are finacial OK....I am scared to think of the costs...He was approved for Medicare and has insurance but I wonder what we are in for...and we, I, am scared to see him so sick...Thank you all for being here...
 

CindyM

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Learn about ALS
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New England
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Good morning Hardtobelieve. Thank you for joining us. It is terrible that you have to be here and I hope you find the information on this site helpful. Don't ever feel bad about telling us what is on your mind, because I found your description of your family's concerns to be useful. It is helpful to know how my own family will be affected down the road. Regards, Cindy
 

janf

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Joined
Sep 23, 2006
Messages
132
Reason
PALS
Country
tift
State
ga
City
tifton
HARD2BELIEVE said:
Thank you all for responding. I swear we are going to wake up from this bad dream but the morning never comes. We have so many emotions going on...My husband and I just had a baby girl 4 months ago and its hard to even be happy for her milestones when we know that Joe (my father-in-law) will loose all that she gains. I also wondering if my husband will ever have this, though, there is no FALS that runds in the family and now my daughter.....

Its been about a year process with his diagnosis...EMG, muscle biopsies...finally he got to the best Specialist in our Pittsburgh Pa area. He is still walking with a cane and driving...though he is WEAK, that is the word of the year, WEAK..having a hard time writing but still going...

My sister in law and I have have been trying to contact our local ALS support group with no luck in getting a call back...I feel as though I am only functioning at 50%...meaning when I am 100% I will be better at researching a little more...

I must admit, though my in-laws are finacial OK....I am scared to think of the costs...He was approved for Medicare and has insurance but I wonder what we are in for...and we, I, am scared to see him so sick...Thank you all for being here...
HELLO IF YOUR FATHER HAS iNS AND MEDICARE YOU SHOULD BE OK. i HAVE BOTH AND SO FAR SO GOOD. rEAD THESE FORUMS YOU WILL LEARN ALOT AND BE BLESSED ALSO. mAY GOD BLESS YOU AND YOURS. REMEMEMBER, YOUR 4MOS OLD WILL BE THE LIGHT OF HIS LIFE DURING THESE HARD TIMES. REMEMBER ALSO, HE MAY LIVE ALOT LONGER THAN YOU THINK. I WILL PRAY FOR YOUR FAMILY. JANF:)
 

JUDIEMATUL

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Joined
Aug 1, 2009
Messages
14
Reason
PALS
Diagnosis
04/2009
Country
US
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pa
City
lititz
such a good feeling

I have read so many indearing notes to people on this site. I think that one could live by this forum alone if it were possible. I am leaving my home soon to go live near my children and my freinds are coming over like it is my wake. I have lived this life of rare disease before and i have lived 4 years longer than i was given but our web site did not give as much love and support as you do everday. I have learned alot from you, my family says i am addicted to you, but you are all i have in the middle of this war, with god at the helm. I am probably getting addicted to my bipap, i use it about 14 hours, but why not? I will do anyting to see my new grand daughter turn 3 months old, or to hear one of you say you heard about a break through, you the best if the best, thanks, judie
 

tdamess

Very helpful member
Joined
Jul 29, 2009
Messages
1,287
Reason
Loved one DX
Diagnosis
07/2009
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US
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ma.
City
halifax
hardtobelieve
i am right with you only it is my son he was digonest (spelled wrong ) 2 weeks ago and he is going for his 2nd opion aug.31st and so scared is excatley how i feel i keep wishing and hopeing its a memick diease but, after reading about it it all fits him and his nuro was very good at getting all the test done . my question to the doctor would be could thier be anything else that we could check that could affect musles such as thyroid, it wont cause als but, it does affect musle as weakness and cramps and maybe make sure that it is at the best range it can be so as not to cause it to be worse .
my son does have a thyroid problem and when he complained of his musles i told him it was his thyroid to see the doctor to have it checked anything to help ease the musle cramping for less pain. wish you the best
 
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