mom diagnosed a few days ago

[lwise]

My mom was diagnosed a couple days before Thanksgiving. We of course knew something wrong was going on, but needless to say we were all blown away. Her neuro suggested considering a trip to a multidisciplinary clinic, and he casually mentioned Mayo, but we're totally lost. And, of course, in that moment, you never think of the questions you should ask -- heck you don't even know what the questions are, and we still don't. The neuro is great -- very compassionate, very thorough, but not very experienced with ALS.

Anyway, in between moments of fear and grief over the past few days, our family has talked and tried to do some basic web searches about clinics, but we obviously have no context for this research and no idea how to evaluate the various options, what their reputations are, specialities, purposes of the clinics (is it confirming diagnosis, actual treatment, research, experimental). All of which is complicated by our collective gut instinct that we need to make some pretty quick decisions and not be wasting a lot of time.

Basically, we're totally new to this. And, of course, we've made the mistake of reading the internet, and also everyone you know seems to know somebody who knows somebody who had ALS, and so we're all terrified at this point. We just want desperately to figure out how to find the best doctor/clinic in the world to have mom examined and treated. We want someone on the cutting edge of things. Thankfully she's blessed with good insurance coverage (knock on wood), and we've been told that they'd cover Mayo if we chose that, and travel would not be a problem at this point. We just desperately want to figure out how to start getting some info and feedback on various options. Are some clinics considered better than others? Do they coordinate with your local neuro, or should you plan to get treatment exclusively from the clinic (We live in the Memphis, TN area)? Do the clinics basically just deal managing symptoms? Do some have participate in research/experimental trials, etc.? We really feel like we want something on the cutting edge.

Any thoughts or feedback would be greatly appreciated.

 

[ltbeauti]

I went to Duke in NC for a few years. I loved it there because of insurance I had to switch to UVA's ALS clinic. They are good too.

I just go to the multidisciplinary ALS clinic. I do not go to another neuro anymore. I get the care that I need at the ALS clinic. Al the specialist see me at the same visit and coordinate care together.

I have been very fortunate to have a great ALS chapter in my area. They have helped me with so many things like loaning me equipment to use, giving me support and information. They are great. They can help in so many ways.

Here is how to find your local ALS Chapter
In Your Community - The ALS Association

 

[notme]

Hi

As said already, the Als association will have a list of physician/clinics in each state. The benefit of the larger clinics is that they can treat the whole disease--including things like respiratory, ambulation and tech needed down the road.

Always have a second opinion anyway--and I'd want that by a specialist in neuromuscular diseases. Mayo would be fine- and the best option for clinical trials is going to be at a larger teaching facility most likely.

One of the pitfalls to places like Mayo is that many of the doctors are in training for their residency and continuity of care isn't the best in my opinion. ( I did the Mayo bit for previous health issues and nearly had a tumor fall between the cracks)

Jax Mayo is supposed to be good, though. I was in MN Mayo

 

[mich5]

Welcome to the forum. So sorry for what you're going through. It is so overwhelming. Is your mother going to apply for social security disability? With a diagnosis of ALS, SSD has automatic approval but you don't receive a check for 6 months. The sooner she applies, the better. But if she's working, she may want to continue to work - each person decides differently. My nuero was able to give me the list of all ALS clinics in my state. However, he also wanted me to go to mayo for a confirmation of diagnosis. So, perhaps touch base with your mom's nuero after the holiday to see if he knows of more multidisciplinary clinics in your area.

Also your local ALS Chapter will be a lifeline. Contact them soon. I went and met with mine just because I was at a loss and overwhelmed with it all. They were so kind and made me feel as though I was not alone in this by the time I left their office and I called often with more questions. They have a loaner closet of medical equipment I was able to borrow and use. They should have a list of all ALS Clinics in your state but usually won't recommend one over another. I chose a clinic based on location, I like it and stayed with it, but went to an ALS Chapter support group meeting and got feedback from other ALS patients on other clinics they were going to.

We're here to help answer your questions.

 

[Katie C]

To be totally redundant.... start your research with the ALS Association website. Once you locate your chapter (even if it doesn't feel especially local) call them.. they will put you in contact with their social worker who will help you with those questions you don't even know yo have yet.

Speaking of those questions... go out and get a multi-section notebook. One section, start collecting those phone numbers: neuro, clinic, ALS Association, HR department contact if your mom was working. This is also where you should keep important e-mail addresses. At the top of this section I also made note of Glen's Soc Sec number and his employee number so I never had to go looking for them. Next section: questions. As they come up, jot them down. Don't count on remembering them between when they come up and your next visit. I used the third section to keep a medication diary: what it was for, when it was started, any side effects, dosage and dosage changes, etc.

Bring the notebook to all appointments. Glen's neuro would even write answer in the book to help me remember.

 

[Barbie]

I am so sorry for your family's diagnosis this week. It is hard not to feel overwhelmed and lost in the beginning but I think you are on the right track. find a clinic and make an appoiintment, keep reading on this forum, and keep your chin up...

 

[lwise]

Thanks for all the help and positive thoughts. We've contacted the local ALS chapter, and the president was very helpful. Thanks for being a part of the forum. Reading the various posts/topics have been very helpful.

 

[hangingon1]

The cutting edge is that there is not cutting edge. ALS is a death sentence and nothing can change that. No ALS clinic, no Als Forum, no, surgery, not stem cell or whatever. It is all spit in the wind. I dealt with the death of my dear wife over 3 yrs. and there was no stopping ALS.
No physical therapy, no positive attitude, not wonder drug, no new cure. It is a complex and diverse disease that all experience differently. All you can really do is make the patient comfortable and love them until they pass one. This is the truth. No other truth is true.
I hate to be blunt, but what I have said is the truth. Just love your mother as much as you can, and remember not to resent them as the burden of care giving gets worse. It will. Remember that she did not ask or want the disease, it just happened. You will have to keep the status quo in tact. God help you, and He will. Ask Him for guidance and He will give it to you.

 

[ottawa girl]

Dear Hanginon-

I am in fact Hanging on! I hang on to God, my family and my friends. I hang on to my tomorrow. I have high hopes and expectation that my ALS will arrest. All things are possible.

ALS is NOT a death sentence, for me. It's an opportunity. An opportunity to mend the fences that need mending, to hug a little tighter, to kiss a little longer and to pray more often.. These things, in my world, are a life sentence. A cutting edge life.

Hope is a good thing and helps many of us to keep hanging on.

 

[tdamess]

sorry iwise it is so awful i couldnt stop crying for months when my son was diagnosed. and a wise man here told me he is not dying today or tomorrow enjoy all the time you can while he is here that pulled me out of the crying stage of dispaire , but took almost 2 yrs to stop searching everywhere for the cure thier aint none when thier is this form will be the way we find out ... good luck

 

[skipper66]

Hi Iwise,
ALS is a very serious disease but it is not a death sentence. They are making progress in finding drugs to slow down its progression and they are on their way to finding a cure. I know a lady who had cancer who was told it was throughout her body and to be prepared because she would die in the next six months. It was 15 years ago. She is still alive and thriving too. ALS makes one appreciate the things that are important in one's life. Yes, we are all going to die of something. We just need to enjoy every moment while we can. This forum has alot of valueable information and they're alot of member on here more then willing to help answer any questions you make have. Take care, Kim

 

[tmackenzie]

Iwise, my mom just passed away 2 weeks ago today from ALS. She was diagnosed on 8/1/12 and then on 8/21/12 at Uof Michigan. I too was looking for answers, research, cures, etc. Anything possible to take away my moms fear that she was limited here with us. Hard it is was to not get caught up in that, I also spent as much time as possible just being with her and making her happy. Lots of hugs, talks and special moments. They told us 2-5 years and we had 3 months. Be prepared for anything. Just be there for her...My mom thought of it as a death sentance as well. I suppose I agree with that, there is no cure. I believe that she is happy and healthy right now looking down upon us and still guiding us. I will be thinking of you and your family. There really is a lot of help for you here and on the ALS Association's local chapter for your area. God Bless

 

[johnnyliverpool1]

ottowa girl...your post is most touching...god bless. johnny

 

[hangingon1]

Firstly you need to realize that physicians,clinics, and other helps will not help. Als is almost always fatal and the patient dies within 36 months of diagnosis. Some live longer with artificial breathing or feeding apparatus or just plain self will. In plain terms, you are in a losing position. Just keep the patient comfortable and give them plenty of love. They will be gone soon enough. No one knows any specific thing about als it affects everyone differently, but is most always fatal. Take it from one who lost the love of their life to this monster disease in Aug. 2012. You can do nothing. We tried it all. ALS wins every time. Sorry to be so blunt, but the truth sets you free.

 

[ottawa girl]

Hangingon -

I cannot imagine the pain you feel at the loss of your wife, but I must also be blunt: Stop it! Your recent comments are not at all helpful nor are they supportive in any way shape or form. As a PALS, I am quite certain your wife would not have benefited from such terse remarks either. I do not appreciate your recent missives, and I would venture to add that I am not alone in that regard. Please, find another way of dealing with and expressing your grief. You were supported by members of this forum during the course of your wife's illness- (I have read the threads) so unless it is your intent to play it forward, please do not post.

Compassion for others will set you free.