doctors and clinics how they help

[rowland's wife]

since my husband's diagnosis it doesn't seem like the dr has much advice or suggestions, I read about several of you who go to MDA clinics we are registered with one the only contact we get is a monthly news letter, the dr say's they can help later with the things we will need. I hate feeling like we just have to sit back and see what happens next? My husbands speech since July 08 has become very hard for people to understand, I understand him more than others. He has lost alot of use in his right hand, now it's moving to his left, he can still walk and drive. But the dr never said any thing about speech therapy, or hand braces, or anything really.I know theres not a cure yet, but I feel like there has to be more we can do than just sit back and see what happens next. He has bulbar onset diagnosed Sept. 08 it seems to be moving so fast, I called the dr today about doing another swallow study and getting a feeding tube. He hasn't been sleeping well which seems to make ALS even worse, he takes ambien, but says he wakes up with pain in his shoulders, anybody have any suggestions on what might help? Also seems to laugh at wrong times like when he is mad it is very frustrating for him, is there anything you can take to help, he takes cymbalta now, I called the dr about him laughing at wrong time she said he could double his ambien, but he says he sleeps to much now

 

[BethU]

Hi, Rowland's wife ... I think your neurologist and the MDA should be doing a lot more to help you two. Have you checked with ALSA (ALS Assoc)? They have provided me with lots of equipment from their loaner closet, AND invaluable information and support.

Can you get to a multi-disciplinary clinic, especially one connected with a university? Even if it's a drive, it's worth it, as you will be seen by speech therapists, occupational therapists, a neurologist and others. A speech therapist alone who is familiar with ALS can give your husband invaluable information about eating and drinking safely and communication devices that are really a godsend when you have lost your speech. And MDA should help pay for some of these, or loan them to you.

I REALLY question the advice about Ambien. It is a sleep medicine, period, and does not affect the emotional lability that your husband is experiencing (with the inappropriate laughter). There are a range of meds that can control that symptom, and really improve his quality of life. ALS is a very serious disease, but there ARE medications, therapies, and assistive devices that can improve the patients' comfort and control over his life. Getting a feeding tube when he is still strong and before he actually needs it can help him get the nutrition he needs. Good for you for asking about it.

Especially with bulbar onset and speech issues, PALS need advocates to follow through with doctors and see what more needs to be done. Sounds like you are being a good advocate, anticipating his future needs and seeing about his comfort now. Sometimes you have to fight the system, but it's worth it for your Pals.

Good luck.

 

[Ellamay]

Dear Rowland's Wife.... I so understand your frustration with the seemingly lack of action with the dr's etc. I hated the sitting and waiting... watching my husband getting worse and worse every day and no one seemed to do anything. You are doing the right thing by getting on the phone and asking for appointments and tests. The receptionist at Tony's dr. know the sound of my voice I have called so often
My husband has the same sleeping issues and no one has offered sleeping pills. In fact he now uses Amitriptaline 75mls and it is so nice to see him sleep. My hubby had pain in the shoulders as well and have started physio (range of motion exercises) every morning. Even while he is still in bed and his arms are stiff. It really seems to help.

Unfortunately the laughing and or crying is part of ALS ... my hubby is so emotional that it get uncomfortable for him and our guests. The rest of us (family) know that he does respond differently ... we use humor to get though those frustrating times. I don't know if there is really anything you can take for that.

You will find that you get more support and info from your local ALS assoc. than from the dr's. That has been my experience anyways.. I have learnt more tips and tricks from the boards here than from the dr's. Practical advise is often what I need. I often hear even from Tony's Home support Nurses that he is the first ALS patient they have ever had. It is hard to imagine that I know more about his condition than the care workers coming in to care for him. I feel like I am training every person who comes to my house. I suppose that is a good thing.
I assure you the more you know what is out there and ask for it the more you will get. Get as much knowledge as you can about the things that might help him and try to get them. You do need to advocate for your hubby every step of the way. There are some great people out there that will help you just keeping talking and asking for what other options there might be.

 

[rowland's wife]

sorry I meant the dr said she could double his cymbalta

I wonder how common is shoulder pain ?

I don't know of any clinics associated with a university but I will check into it, the dr is suppose to be checking into a speech device for us, but I wonder how hard it will be for my husband to type he has alot of weakness in his right hand and his left is starting to get weaker

what kinds of meds are there that might help with the laughing?

 

[PDaddy]

...

what kinds of meds are there that might help with the laughing?

I use Zoloft for that, it helps me!

 

[BarryG]

Hi Rowland's Wife;

Check out this link:
http://www.uamshealth.com/?id=3649&sid=1

Hope this helps.

Barry