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Active member
Jun 11, 2006
Loved one DX
The Pas
Took my Dad to see a specialist last Tuesday. This doctor did a physical examination of my dad and then did and EMG and NVC tests. He had my dad in his office for about an hour. Lots of questions for my dad that he answered as best he could. At he end of the hour he told my dad that he was sorry that he had to confirm the diagnosis of ALS. (He had been to 2 neurologists before this who diagnosed him immediately). This all from June 6 to the present. When we left he gave my dad a pamplet on Rilutek and a lab order for blood work. When I got home I looked up the blood work orders on my computer. The blood work includes: CK, hexosaminidase, TSH, Lyme, immunofixation, protein serum levels.
Dad is very thin and has lost a lot of weight. Is having difficulty even using a walker right now.
My head is still reeling - I guess I was just so sure that he couldn't possibly get a diagnosis this fast. Maybe I was hoping for a miracle.....I think Dad was too. It knocked the wind out of our sails and I guess I wonder what do do next. The ALS society is supposed to contact us. The doctor said he wanted to see Dad again but with the trip being so physically difficult he said that he could arrange a conference call. Any ideas out there of what we can expect now?
Dad still doesn't know the complete impact of the disease, doesn't seem to want to make any decisions as of yet and I don't want to push him but I'm afraid. He's going to need renovations around his home in order for us to care for him there as long as we possibly can. I don't even know where to start....never mind convincing dad he needs to help me make decisions.......
All I can offer is that you will eventually sort it out.
It's all too much at the start, and there are alot of emotions to sort out as well as the physical stuff. But it will slowly come together.
sorry about your dad

hi there JMH

i'm so sorry to hear about your father. my aunt was diagnosed this summer as well. we all went through that same shock you described. and i must say, i felt the same rush - what do we do? how do we prepare? why isn't she learning more? i was constantly thinking about ALS and researching it and just completely consumed by thinking of all the things we might be forgetting before it's too late.

if you take no other advice for the rest of your ordeal with ALS... please take this advice. i learned from the people on this forum to let the patient lead the way. your father is getting in touch with the right people... doctors and follow up appointments. he will need to meet with an occupational therapist and a speech therapist. the best you can do is get in touch with the ALS clinic near you and then let your father take ALS at his own pace. he will learn what he needs to do just like everyone else has. and for now, you can atleast get some info and support on this forum. everyone is wonderful! so let it go as best you can and deal with one day at a time. you'll know when the house needs to change or he needs something special to care for him properly. but don't jump the gun too much. your father needs to remember that he's a normal person and still living his life. not preparing for a life of disappointments. you are so wonderful to be such an amazing support system for him. i can't tell you how much he must love and appreciate you. for now, enjoy your father and let him lead the way for his future. it gives everyone a little less to worry about.

lots of love to you and your dad.
My husband and I have taken a different approach when it comes to dealing with what he wants to do. My husband decided that he does not want to see the specialist and all the other team members. He says they make him feel like there is no hope. He feels very upset after seeing them so we decided a while back that I would go see the doctors and discuss the changes he is having and learn to deal with it one day at a time. It is working. I know some may not agree with this but for us it is working for now. I want to help my husband so much and this is one of the ways that I am helping him.

You have to do what feels right for you, not someone elses idea of what should be done. Look at the options available but in the end it is yours and the patients decision. AL.
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