Questions Upon New Diagnosis

[Paula]

Hi this is my first post.

My dad was just diagnosed last Tuesday. He hasn't had his follow up visit yet with his neurologist.

I am just wondering if anyone could give us advice on what questions we should prepare ahead of time to ask his neurologist?

Any help anyone could offer would be greatly appreciated
Paula

 

[ladave]

Re: Questions Upon New Dx

Paula-

Welcome. I'm also newly diagnosed. This is a wonderful community of PALS (Persons with ALS) and CALS (Caregivers). Sorry for the reason you're here, but glad you're here.

As to the questions you should ask, let me ask you some questions first. How old is your father? How long has he had symptoms? What type of ALS (i.e., limb onset or "bulbar"- i.e., is it in his hands and/or feet, or is his speech and swallowing affected)? Where are you located, i.e. USA, Canada, or somewhere else?

Basically, what you will need to discuss with the doc is (1) the exact basis of the diagnosis, i.e., the extent of testing to rule out other possibilities; (2) how certain the diagnosis is, which has to do with how far it has developed; (3) getting a second opinion from a recognized ALS expert, which can either be by referral or your own investigation; and (4) a treatment plan, including whether it is adviseable to take Rilutek, the one drug available to treat ALS (there are plusses and minuses), what supplements are useful and what dietary changes should be made.

It is all very overwhelming, I'm pretty overwhelmed myself. Don't try to learn too much all at once. The people on this Board can help you with locating resources in your area. My best wishes to you and your dad.

Dave

 

[TBear]

Re: Questions Upon New Dx

Hi Paula:
One thing you will want to know is whether there is an ALS Clininc close by that you can use to help with the transitions that will come. I suspect that it will be in Charlottetown... but don't know for sure. Equipment, supplies and professional advice of Occupational therapists, speech therapists and the like are usually available centrally.
Good Luck

T.

 

[Paula]

Hi Dave
Thanks for your response. It has been a busy couple of days and I have been unable to check back in on the forum. I am from Prince Edward Island on the East Coast of Canada.My dad will be 58 this May. His first real symptoms that were noticeable to us were in the Spring of 2005, he was complaining of a sore neck. Since then his hands have weakened and we have noticed some loss of muscle in his legs as well as difficulty breathing, especially at rest.
I am also wondering what info you might have on Rilutek? What are your suggestions concerning alternative medicine?

 

[ladave]

Hi Dave
Thanks for your response. It has been a busy couple of days and I have been unable to check back in on the forum. I am from Prince Edward Island on the East Coast of Canada.My dad will be 58 this May. His first real symptoms that were noticeable to us were in the Spring of 2005, he was complaining of a sore neck. Since then his hands have weakened and we have noticed some loss of muscle in his legs as well as difficulty breathing, especially at rest.
I am also wondering what info you might have on Rilutek? What are your suggestions concerning alternative medicine?

I am really the wrong one to ask about alternative medicine, as I am still trying to sort out all of the claims and counter-claims and choose an alternative course of treatment myself. There is a lot of information about alternative treatments, but as others have reminded me, you need to be on guard for the scam artists and charlatans who will gladly relieve you of your money.

Rilutek- lots of information on that too.

But you should search this site for some countering opinions on this drug. The problem with Rilutek is it does not make you better even if it works, just slows the disease progression. With a disease as variable as ALS, it is hard to know if it is working or if you just have slow progression. FWIW I have weighed the factors and decided to try the drug; if it has bad side effects for me I will discontinue.