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JMH

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Loved one DX
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CA
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Manitoba
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The Pas
My Dad went to see the second neurologist on Monday. My sister said he seemed quite taken aback that dad had seen this other guy - kind of like - so what are you doing here? Same thing....did a physical exam, checked his muscles, etc. - told him to go home and gather his family close and spend as much time with them as he could as there is no cure for this disease. No EMG, no NCV, no check for heavy metal toxins. The 1 and 1/2 hour trip to the clinic is very hard on him. He is very fatigued. I just want to hold him close and wish this all away.
I have been in contact with the ALS Society of Manitoba - the lady there told me to ask for a 2nd opinion from a Dr. in Winnipeg who specializes in this. The problem is getting dad to agree to go (it's twice as far travelling). He is tired and depressed. The rest of my family think that because he is getting weaker in his arms/legs and so tired that maybe we should just accept that he has this and deal with it. I'm at my wit's end. I keep in contact with him by phone (will be able to go to him next week) - tell him to get lots of rest and not to give up. The lady from the ALS Society is sending me a binder with info. that I should receive shortly. I wonder if because he is 77 years old that the doctors just don't want to bother looking further. It is just SO frustrating.
JMH
 

ekoozmin

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Feb 24, 2006
Messages
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Hi JMH--

Geez--these docs are so insensitive--it makes me furious! I feel your frustration. My father was diagnosed at age 74 and told the same thing. There so many options even for someone as "old" as 77.

Ask your father if he has the desire to go on as long as possible--maybe he has things left to do, grandchildren to watch grow up, things like that? Did they measure his FVC? Talk to him about a feeding tube? He may be feeling tired and weak because his FVC is getting low and he is unable to expel carbon dioxide, or maybe he needs more nourishment. Discuss whether he wants to be ventilated, or use a BiPap as he progresses. Did they even offer him an antidepressant prescription? A Rilutek or riluzole prescription? These docs sound so incompetent.

If it were me, I'd do everything I could to get him to go see the doctor who specializes in ALS--hopefully one who is associated with a teaching hospital. Perhaps this doctor knows someone closer to home that, once your Dad is evaluated, can monitor his progress and follow a protocol. Can you break the trip into two, maybe three days? Most of all, realize that he is depressed, overwhelmed, and in shock--he's not thinking clearly. He'd probably welcome you making some decisions for him, depending on his nature.

It took 6 months for my Dad to come out of his severe depression--by then it was too late for the feeding tube. My point is, time is of the essence. Go and be his advocate--make all the noise you can--demand that they give you some other answer than go home and die; yes, he will die, but it doesn't have to a horrible experience, maybe his life can be prolonged a little, and his quality of life improved.

Please let us know how things are going. You and your family are in my thoughts.

Liz
 

JMH

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Joined
Jun 11, 2006
Messages
42
Reason
Loved one DX
Country
CA
State
Manitoba
City
The Pas
Thanks for the advice

Liz,
At this point I doubt if anyone's asked dad just what his wishes are. Aren't we just too dumb for words? It's been such a shock. I don't live in my home town anymore so we have been taking turns caring for him during this diagnosis stage. I am leaving early next week to stay with him and am trying to gather as much info. as I can before I go. I really appreciate your advice and I will definitely talk to my dad, talk about options, etc.
My sisters don't think it's a good idea for him to know everything but I don't think that's fair - from what I've read in here it is a must!
Thanks again.
JMH
 

jacquelyn

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Mar 11, 2006
Messages
30
Hi JMH,
My Dad, like yours, is 77 years old. He was diagnosed with ALS in January. We weren't sure if we should tell him or not what the diagnosed was. But we did decided to tell him. In the beginning I don't think he realized what was happening to him. He knew that he wasn't going to get any better but I don't think he realized that it would get as bad as it is now. We, as a familly, slowly told him more and more about the disease. And now, 5 months later, he knows mostly what is happening. We still try to stay postive and stress the good things around him but he goes throught stages of depression. It helps him to have all of us around him. We never leave him alone. This disease is so dreadful.
 

hope

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Joined
Oct 1, 2005
Messages
230
This is very sad that your father and family were treated this way. I think it is disgraceful the way people are being treated with this illness. What is the matter with these doctors who do this? I do not understand at all why. Is it so hard to be caring and understanding to the patient with als and the family? Something is wrong here. It upsets me so much to think that this kind of treatment is going on. If they would just stop and think for a moment what they would feel like if they were told they had this. My heart goes out to you and your family. I know your pain, it hurts deeply. I was like you, I could not accept the diagnosis that was given to my husband but in time we had to accept. I do feel though the tests are important. All of us here know how you feel. I have said over and over again to our doctor that doctors need to give hope to the patients and family.

HOPE.
 

JMH

Active member
Joined
Jun 11, 2006
Messages
42
Reason
Loved one DX
Country
CA
State
Manitoba
City
The Pas
To Jacqueline and Hope,
Thank you so much for your kindness understanding. My family, with the exception of my brother don't really seem to see that time is of the essence here, nor the complications that will be upcoming. I called my brother last night and between the two of us we decided that we will get dad to a specialist as soon as possible. It's heartbreaking and frightening to hear that so many people are affected by this disease. It is very much like a nightmare that you can't wake up from. Dad has 6 of us kids (oh to be a kid again) and because we are spread out in Manitoba and Alberta it has been difficult and frustrating trying to draw up a plan of action by phone. This morning I called the number of a specialist in Wpg. I'm hoping I'll hear from them soon to find out whether or not we need a referral from a doctor or whether we can strike out on our own with this.
Thank you for the much needed support - if only doctors had some of the care and compassion that I've found here. I wish the best for you and your families.
JMH
 
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