meds/insurance/medicare

[chucknorris]

how do people afford this disease?!? everything costs so much, insurance doesnt cover, medicare, soc security are impossible to navigate.... its a full time job just trying to get meds, appts and insurance calls done each day..............its so unfair.........

 

[brooksea]

I feel your pain!

On the equipment end, we ask for financial assistance from the distributor. Medicare allows this, so check it out. Some will help you out, some won't.

Do you need help with a specific "thing?"

Believe me, we are pretty much piss poor right now, so remodeling the bathroom is becoming only a dream.

 

[JeffP]

i feel your pain to like brooksea said it is so expensive it seems for any type of medication ect to just have the sources to get it .its a loosing battle but dont give up the als foundation can surely help with giving you suggestions ofv what you may qaulify for even the gaurdian angels might be able to help .try to stay strong and not over stress yourself out that will make all worse i will be saying a prayer for you hang in there

 

[Miss]

I am lost in a sea of paperwork right now, hoping that some approvals come through before we MUST have equipment. The equipment we have so far is on loan from our ALS Assn. closet. I'm going to hit up the MDA closet next!

 

[tdamess]

I feel your pain!

On the equipment end, we ask for financial assistance from the distributor. Medicare allows this, so check it out. Some will help you out, some won't.

Do you need help with a specific "thing?"

Believe me, we are pretty much piss poor right now, so remodeling the bathroom is becoming only a dream.

oh brooksea so sorry do you have a local chapter to help , if not you can go to stu

 

[tdamess]

you also chucknorris

 

[luvnmm]

Chuck Norris...
Have you gotten in touch with your local ALS support group? I don't know about others, but the one in Richmond, VA has what they call a "loan closet" where dealers or patients of the disease give gently used equipment or new equip to the closet and the leader "loans" what is available to the group. My mother has just gotten a walker to use until she no longer can use it, and has gotten a pwc for my sons graduation tomorrow. It's hers until she either gets one of her own or no longer needs it. The same with the cough assist, or anything that an ALS/PALS patient might need. It's worth a shot to try. I know medicare will cover one power chair for you. I hope this helps you some. Take care and try to think positive.

 

[indigosd]

ChuckNorris, most of us can totally identify with your frustration because it is the new reality for most of us. I see that you are not new to the ALS but new to the forum. WELCOME! You will soon discover that this will become your lifeline of support and your new family. :] Many of the CALS have lamented the fact that we all have to go through this tedious and painful, FRUSTRATING wasting of moments to try and navigate the system while trying to keep our heads above the water and not drown. If it is any comfort at all, you are not alone. If you have not already done so I would advise that you begin a filing system and keep EVERYTHING related to your PALS filed. I get copies of all the Dr. orders, notes, lab results, procedures etc. I also keep a notebook with dates, time, names and a brief synopsis of conversations with any of the people that I speak with so that I can do follow up. My experience is that I have to always do follow up. Remember that the "sweet" squeaky wheel does eventually get greased! Have you a Church family? Talk with your religious leaders and explain the situation and perhaps they will assist with a fund raiser. Our Church has offered but all they want to assist with is medical costs and we really do not have many. We need help with LIVING costs and they will not help with those. :[ As your Pals progresses you will find that medicine costs will not be such an issue. You will need more assistance with home care needs. I have included the web links to ALSA and MDA in your state. Make contact with them. Some States have wonderful assistance and others [like my State] have nothing or next to nothing for PALS and CALS.

The ALS Association Michigan Chapter: MI Home

ALS Centers - Welcome to MDA's ALS Division

Miss, is there something specific that you need help with problem solving? Let me know!

Linda, you go girl!

Lilac scented hugs and allergy sneezes from the beautiful Prairie this morning! Kay Marie

 

[tdamess]

your so good indigosed

 

[CAHPAH]

Indigosd
Have you pastor read James 2: 15-17 and then ask how they can not help with living cost. My church is a small one (about 150 each Sunday) and many times over the years we have raised thousands of dollars for someone in our church family who was in need. We usally take up a special collection which the church then matches. Right now Serena's equipment needs are few and we both have good ins. but I know if we had a finacial need my church would come through. As a matter of fact I am sitting on a $300 check right now that one of my church family sent without even being asked. Sorry to go on but I have been a christian all my life and it really bothers me to hear people say their church won't help them. Next to glorifing God and telling others about Jesus that is want the church was created for!