Frustrated

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My mother in law was diagnosed with ALS bulbar onset in June. As our family has tried to gather information and resources we have really been frustrated. We have attended a clinic at the U of Michigan and were very dissapointed with not only lack of information but the insensitivity of entire staff. I guess we just expected that they would let us know what we could be expecting in the future and how to prepare. Does this come later? Should we be asking more questions? Should we try another clinic? We just aren't sure what we are looking for and where to find it. We want to know how to give her the best quality of life possible but have it ready before she needs it. Any suggestions?

 

[t34gib]

Call your local ALS Association and they will even do a home visit and talk to you about what to expect. Also find a certified ALS clinic to attend and ask all the questions you can think of. Everyone is different so it is hard to say what to expect, but if you read enough of these posts you will know what can be expected to happen. I have bulbar and was diagnosed in January of 2009. I can no longer speak, eat or drink. I have a feeding tube and am doing well with it. I am beginning to get some weakness in my left hand so I guess it will progress from there. But, as I said, no two people are the same. Some progress slower than others and the doctors should be able to tell you if you are slow progression or not. And even that is a relative term. So find somewhere to go that you are comfortable with and that takes the time to answer your questions.
Nancy

 

[DgtofTNfan]

I second calling your local ALS Association. They provided a pile of handouts, handbooks and pamphlets about different aspects of living with ALS. You can read through that and make a list of questions. You can also find much of that on websites of the National ALS Association and ALS Association of Michigan. While the resources in Canada are different the medical information and the information about living with ALS on their websites was also very helpful. I like the manuals ALS Society of Canada.

I am sorry the clinic visit was not what you expected or what it should have been. If it was not a designated ALS Clinic, you should look for the closest designated clinic to you. Plan B is to arm yourself with information, make a list and ask questions repeatedly until you get the answers you need.

You have already started Plan B by coming here. The members here are very helpful and supportive.

Welcome to the forum.

 

[Lavender Lady]

If it helps at all when I spoke to my Dr. after he gave me the diagnosis he said that whenever I have questions for him that he will be truthful. he said he will let me pull info. out of him rather than him pushing to much info. on us at once. He said as i am ready for more info. I will ask for it. We are doing the same with our kids. My husband is looking into finances for our future and I have been doing some research on what things I know i will possibly need in the furture as well. We will have to do some remodeling down stairs and then there are things to help keep me mobile and communicating etc. Hope this helps.

Sorry for the diagnosis. it is not what any of us wants to hear.

 

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Thank you for those words of advice. We will look into everything you suggested. I already feel like I am finding important information here. I appreciate your help and so admire your strength. Thank you for helping me as you fight this horrible disease. You are all in my thoughts and prayers.

 

[Miss]

You are in our thoughts and prayers, too.