amber and bruce

Sorry, I have not been on here in a while. We generally go every 3 months. We were last there a couple of weeks ago. We likely will not make the August trip. It has become so exhausting to travel the 7 hours from where we live. When do you all go? How is it going with your family.

Just curious does anyone else have problems with the PALS not accepting help from anyone other than you?We finally got "hired help" in the house, and my husband has gone so far as to call the cops and report that he doesn't want her here.He doesn't want ANYONE here even though he can't bath himself, dress himself, fix food or feed himself, falls all the time and is too stubborn to use wheelchair.We are 30 and 33 with a 2 year old and 6 year old, his disability check dosn't pay all of our bills so I have to have a full time job.The state of TN will not allow a spouse to be a pd caregiver so we could get divorced and I could be pd to be here but I like having a job and a break from the reality that is my life--even though I am a nurse and my job IS bathing, dressing and feeding people, they are usually greatful for the care they are receiving and not mad at the world. Will there ever be a time where he accpets he needs the help and isn't running off the people that are here to help him?

Hi! We got our Honda minivan (new) at United Access in Memphis. However, it was ridiculously expensive. It does have a ramp for the wheelchair - VERY important. My inlaws have a mini van with a lift. We are already at the point that a transfer would be impossible, so know that you would "outgrow" a lift quickly. Geri said she has a good, used van (full size?) for around $3,500. That's really a good deal. You won't be putting that much mileage on it, so that isn't really an issue.

There were quite a few vans for under $5,000. Keep your eye on the equipment section of this site, too. Vans pop up fairly often.

Amber and Bruce - so sorry to hear about your husband...looks like we were dx the same time. Praying for some peace and extra help around the house for you guys!

Amber it was so good to hear that we have similar issues not good like I am happy you have to go through it but it is so very hard, my husband is depressed he's losing use of hands, can still walk but getting weaker and weaker. I guess we are put here on earth because God knows we will be able to get through this. I didn't expect to have to go through anything like this and your husband is so young I'm so sorry. It's so hard and anytime you would like to send me a message please do so I am new to this whole ALS thing and I hate it!! Love to you and your family.

Amber, so sorry you have to be here, but we are a good bunch!! Missy is an awesome lady, let her help!!

I just noticed that the reply I made to your post has not posted. I included an email address for the MDA association, and that has to go through the moderator. It should post sometime today, though. Here is the information I included in the reply:
Sherry D. Bramucci
Muscular Dystrophy Association
Health Care Services Coordinator
901-748-3036
901-748-0485 (fax)
866-972-1543 (toll free)
[email protected]
The ALS Association Patient Care Coordinator is Beth Bumgartner. Her number is 901-854-8661. Both of these ladies are great and can set you up with information and equipment.

Dr. Tulio Bertorini's (ALS specialist) is 901-725-8920. He is the doctor in charge of the ALS/MDA clinic. Also, please feel free to contact me anytime. (901)827-5750. You are in my thoughts and prayers.

Amber, don't hesitate to reach out if you need help. You have so many people close by in Memphis going through this too - too many, actually. But, with larger numbers of PALS, you get more resources. Memphis has a host of really good doctors that have alot of experience with this disease. Once you get an idea of where you are with this disease and the speed of Bruce's progression, you can easily schedule visits where you are only having to come here every few months. Barring problems, ALS is very manageable, difficult, but manegable. Missy McGowan