Cost Of Things Unbelievable.

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hope

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I find it unbelievable the cost of things to help a patient with this horrible illness ALS. The cost of a scooter is four thousand dollars approximately. Stair lift, almost 16,000 dollars. A van lift almost four thousand dollars also. I just do not understand when they know people need these things why they have to be so expensive. It is sad.

Sandy.
 

Countrycouple

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Hi Hope..
It's extremly sad.. and that is one of the reasons I am hosting a golf tournament in honour of my mother and ALS.. I am hoping to raise money for the people who are suffering from this disease.. and their families. And hopefully with more fund raisers we can make it easier for the families who are suffering from this horrible disease. I work for a local school board in my area..and am trying to find a way for the kids to raise money for ALS and for the schools themselves, so EVERYBODY is a winner.. Have any idea's anyone?
Mike
 

hope

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What a kind thing for you to do. I have thought about this also. My heart breaks for those who cannot afford the things they need. We are just beginning to see the impact this disease causes financially. I have a few ideas for you that may be of help. Car washses, bake sales, sponsors for walks. I have wondered if it was possible to bring communities together and do something that would help many, I am not sure what could be done but have given some thought to this. I wonder if all of us could maybe work together and bring in some ideas.

sandy.
 

Al

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Hi folks Me again. My neice last year had a mini walk for ALS at the school she teaches at. I went to the school on 2 days and talked about what ALS is and what it is like living with it.
I took my hand splints and my Bipap and showed the kids from Kindergarden to grade 8 what ALS was about. I tailored the talk to fit the age group that I was talking to. 30 Years in the fire service gave me an idea of what keeps kids interest. The kids in the school had a walk and we had donated prizes for the most money collected and the most number of people that the kids had involved. We took the money that was raised and ALS Toronto bought a lift chair and a hospital bed for ALS patients. When we took the pictures of the equipment that was bought and had a plaque with the kids school name on it, it made the kids especially proud. They saw where their money went. Not to a faceless beurocracy but real people. The Dufferin Peel Catholic School Board was most helpful in the venture. Call your local school board. The High Schools have the Community Service Program that all students have to do community service hours. Use this resource. If approached right it can be a good awareness tool and a fundraiser.
 

Al

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Ok Guys me again. I promise I'll go to bed after this post. I know how expensive things are. BUT we do have help in Ontario which is why I ask people to put in their profile where they are from. I have a wheel chair provided by ALS Ont. I am having renovations for a wheelchair friendly shower done and a porch lift both funded in part by March of Dimes. There are agencies that can help us but a lot of us don't know what is out there because they are not advertised. That is where being a member of this forum or a lurker here as they sometimes call themselves is of benefit. We do have a lot of good information here and it is from people that are as they say Been there Done that. So hang in there folks and ask questions. There is help here and you are not alone.
AL.
 
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spud01

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Bad Day

Hey Guys,

I don't mean to sound so doom and gloom when all of you are so inspiring. My fear is getting the best of me. I feel like I am loosing it. I can't eat, my weight is dropping. I am getting weak, it is hard to tell if it is from not eating or possibly the disease.

I am having so many panic attacks, it is hard to get a grip on this. Help, how do I do this.

Spud (Terri)
 

hope

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Unfortunately we went to the ALS society and there was nothing available for my husband. They are truly very kind but on three different occassions we were not able to be helped. The stairlift was not a straight one we had to have it custom made which they do not pay for. The van lift they could not help with because they did not have one and they told us our van would be hard to fit. The scooter at the beginning we asked for unfortunately did not work properly so it ended up buying one of our own. At this point I told them they were very kind and that these problems are unfortunate but I would not ask again due to feeling embarrased asking. We have purchased the things needed for my husband by ourselves. They are kind though to talk to but sadly we were not able to get the help needed.

Sandy,
 

MarciaA

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I teach at a high school that did a cash drive fundraiser that went toward Hurricane Katrina survivors and clean-up. They had a contest between staff and all four grades. We raised over $16,000. Something similar could be done for ALS.

Marcia
 

Granny

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Terri's bad day

Hi Terri,
I am sorry that you are having a bad time of it. Does your doctor know that you are having a hard time coping and feel like you are losing it? Maybe you need some medication like antidepressants to get you over this period of time. I know it is not nice to think about taking them, but it helped me when my mind was racing here and there trying to sort this thing out. Just try to stay positive (I KNOW, a very hard thing to do). If venting here helps you, then do it often. I am sure someone will have more advice. I just wanted you to know that I am thinking about you, and know that the time you are going through at the the very first is probably the worst time of this whole illness, mentally at least.
Hugs and prayers, Leah
 

hope

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Terri I am sorry to hear you are having a hard time. Please know we are here for you.

Sandy.
 

hope

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I think the ALS society are truly very kind and caring. It is very hard for them also to not be able to help when things are needed. With our situation the stairlift has to be custom built and it is very expensive. They are more than willing to help when they can but the prices on these things cost alot. I do not know if canada has what the states have, like the mda telethon. Something like that for als would be so helpful.

Sandy.
 

braveheart

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Equipment help

Hello, Here in Saskatchewan we have SK Housing Corp. that will give money to those who qualify. Income tax reports and other sources of income are things they want to know about on an application. They probably don't want to give funds to the wealthy, it is a big chunk of $$$.
I don't know about other Provinces but they must offer something similar.
Used equipment is available as well. I am very thankful for this resource and feel bad for those left out in the cold.
 

ladave

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This thread seems to be discussing separate subjects. Terri, the emotional rollercoaster can be most difficult. I take the antidepressant Celexa to help stabilize my moods. Doesn't always work but God only knows where I'd be without it.

As to the expense of things, it is ridiculous. If you don't have insurance to cover them, these types of modifications are out of the reach of many people. Watch out, or I'll be hopping on that political soap box again...:)
 

dana

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Terri (spud)

My dad was losing a ton of weight and was not able to eat for a long time. He would choke on food and water, and basically was only able to drink Ensure to try to maintain some calories in him. It was an uphill battle that seemed like he could not win. He got a feeding tube and was able to gain nearly 20 pounds back. The feeding tube has been great because he feels full again and not starving. And, he could also eat and drink if he wanted even though he has the tube in place (dad still does not eat or drink for fear that he will choke). Dad was really nervouse about getting the feeding tube put in, but I have to say that it was one of the best decisions he has made so far with this disease. I know that many people with ALS do not want to go that route, but it might be something you could look into. The whole procedure was very easy, pretty painless, and dad has been able to gain weight and keep the weight on. Just thought I would throw the idea out. The feeding tube is not nearly as scary as what a lot of people think. You might feel better mentally with a full tummy too. Good luck.
Dana
 
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