ALS Director coming to my home

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Johny

Member
Joined
Feb 2, 2015
Messages
20
Reason
CALS
Diagnosis
12/2014
Country
US
State
Ohio
City
Wauseon
Can someone please explain what the ALS Ass. does and why they like to come out to your home?

As I have stated earlier my wife has ALS.
I have no complaints for them to come out to my home, I just don't really understand all that takes place.

I would take their help, but first I need to know how and what they do.

Another thing I do not understand is in April there is a 5K run in our area and there has not been any information on it, how I found out about it was through our priest and he intends to run in it.

I would be getting the word out before now, I take that this is a fund raiser.

There is allot that I do not understand and am learning.

I will be looking forward in hearing more about what the ALS ASS in Northern Ohio has to offer.
 
I can only tell you what my chapter does. They run a loaner closet with lots of good stuff for this stage of the disease. They can help you understand where the disease is going.They can help with assistive technology. The local social worker is usually my contact. I don't think it's out of line to ask them why they are visiting and who's coming. Ask for goals for the meeting as you would in any other business situation. Good luck!
Hollister
 
They will also assess your home and help you plan if modifications are needed. They are a good resource.
 
Our Patient Services Director came to our house and showed us where there were potential modifications we could, and should do. She looked to see what we might be able to use from the loan closet. I am getting a rising recliner because I have a hard time getting up from my current chair. They provided a ramp, toilet/shower chair, bed bar, toilet grab bar, all from the loan closet.

Ask them in advance what you should be expecting and what they want to accomplish. I am sort of surprised they just said they were coming out instead of asking. Ours local chapter is always ready and eager to help but won't do anything without our asking or saying yes to their offer to help. If you don't want them to come out or aren't ready, tell them, but all in all I think it is a great thing they do. It is like having a social worker/occupational therapist assessment without having to pay for it.

They know this is a difficult time for us PALS and our CALS alike. They just want to make it easier on both of you.

Good luck and please keep us posted on what happens.
Doug
 
They did our intake over the phone. If you are a vet they hook you up with a pva rep and help you get the process started. They get you family support resources if you have children that are young. They assess your home for the need for ramps, grab bars, shower chairs, etc. They help you decide about wheelchairs, ramps to vans, lifts etc. They will provide you with support group info and how to access it. They will let you know about the closest als clinic and how to become a patient. They offer grants and respite care and can give you info on that. There is a lot for them to go over with you if no one has.....
 
Good Sunday morning Johny. As everyone else has mentioned the ALS Association is a resource for you and your wife. The insight, resources, tools, and support they offer is for you and to help you as your wife's illness progresses. That said, you have help them help you by allowing and accepting their help. Our local Austin, TX ALS Association Chapter was very helpful for us. Jennifer Beckett, our local ALS Assocation Mgr., helped us along the way. The support group was very helpful in giving me insight into what was to come and the group was and had lived the very life my husband and I were living and going to live in the months and years to come. Their empathy was comforting and reassuring during a very difficult time.

Long message short, they ask to visit with you so they can understand, access and advise on your specific situation and stage in this process. In addition, our local ALS Association also collaborated with a local foundation, The Busby Foundation, that helped in providing us the much needed funds to renovate our shower from a tub to a walk-in. Again, I hope your candid and accepting of your local association.

Prayers are with you and your wife. God bless.
 
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