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PHIL

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Jan 10, 2006
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A close friend nicknamed "Bugsy"has been diagnosed with ALS and the Friends of Bugsy want to financially help him and his young family in regards to making him as comfortable and mobile as possible. We all are there to offer emotional support but I understand that there is many costs possibly not covered by OHIP and by extended care insurance. We have undertaken some fundraising activies already and should be able to help substantially.
Can anyone tell me what monies would be needed for what equipment?
Thanks
 

Mike27

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Joined
Apr 19, 2005
Messages
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Diagnosis
10/1993
Country
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State
Alberta
City
Edmonton
Hi Phil,
I think what you are doing is fantastic! Good for "Friends of Bugsy"!

The total cost is hard to estimate, some costs are covered (both Provincially and Federally) and others are not.

I have spent, on equipment and home modifications, approx $150,000. Mind you, I've had the disease for quite a while and some of those costs were recovered. BUT, I had to have the money up front. The costs were recovered after the items were purchased.

Things like wheelchairs with adaptive devices could run you in the range of $7000-$20,000. Home adaptions can also be pricey, but can be claimed as a medical expense.

Your friend Bugsy, has a tough job...he must look down the road at what he may require. This is difficult for someone newly diagnoseded. You, as his friends may have to help him. He may need cieling track lifts, bathtub lifts, wheelchairs, walkers, ramps, wider doorways, a different vehicle with a ramp, electric bed, etc etc. It's a helluva lot to take in...

The ALS Society can help you guys identify some needs for Bugsy. Just don't overwhelm him with decisions at this stage. If he's like me, it took a while for the diagnosed to sink in. But stay ready with answers and keep up on types of equipment.

What you folks are doing will certainly benefit Bugsy! He's got some good friends!

Cheers!
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Phil. Sorry about your pal Bugsy. Has he registered with the ALS Society? He should also register with the Community Care Access Center if there is one in his area. The ALS Society has the numbers for them all. The CCAC will set him up with an Occupational Therapist and a Physio Therapist who can assess his needs and help you to decide what is covered and what isn't.
If he is going to an ALS clinic ? There are OT's and PT's there as well.
One thing that may not be covered completely is the ALS medication Rilutek. Here in Ont. it is around $660 per month. It may be covered by his drug plan if he has a good one but some don't. Some of the things that aren't covered are small items like button helpers $15. A tool to help you turn keys $12. He may have to replace all the door knobs in his house to handle style instead of knobs. An eggcrate style foam pad for the mattress to stop pressure sores can be $50 to $500. The list goes on. There are websites available with all sorts of handy gadgets that help with day to day life but are not covered by most insurances. If you need more information feel free to ask.
Al.
 

TBear

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Joined
Nov 4, 2003
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Country
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Way to go Phil!
What you are doing is fantastic. Bugsy will likely be referreed to an ALS clinic close to where he lives. As Al indicated, the OTs PTs and Speech Therapists will help out with his needs. The extras you seem to be helping out with. Just don't forget him and his family when the goiong gets tough. They'll need friends like you to stand with them even if it''s just to visit and talk to him... or at him if necessary.
Keep in touch

T.
 

A Daughters Love

Active member
Joined
Oct 8, 2005
Messages
50
Hi Phil,

What Tbear said about being there when the going gets tough is essential! As time goes on arrange visits so his family can get away for a few hours for a break or just to do errands. He'll appreciate it and so will his family. As far as your fundraising goes, way to go! Bugsy is very lucky to have you as a friend. Good luck.
 

rcharlton

Moderator emeritus
Joined
Jun 20, 2005
Messages
610
Reason
PALS
Diagnosis
11/2005
Country
CA
State
Ontario
City
Toronto
Hi Phil,

Bugsy and his family are lucky to have friends like you.

How far has the ALS progressed with Bugsy? Is he is still fairly mobile or does he already need assistance to get around?

It's always a good idea to get adaptive equipment before it is needed and if the progression is rapid - he will need adaptive equipment right away - but if the progression is slow he may not need it for a while - which gives you some time for your fundraising efforts.

Good luck.

Richard
 

PHIL

New member
Joined
Jan 10, 2006
Messages
5
Re:

thanks for your help
he is still mobile , and your advice is greatly appreciated
Phil
rcharlton said:
Hi Phil,

Bugsy and his family are lucky to have friends like you.

How far has the ALS progressed with Bugsy? Is he is still fairly mobile or does he already need assistance to get around?

It's always a good idea to get adaptive equipment before it is needed and if the progression is rapid - he will need adaptive equipment right away - but if the progression is slow he may not need it for a while - which gives you some time for your fundraising efforts.

Good luck.

Richard
 

PHIL

New member
Joined
Jan 10, 2006
Messages
5
Re:

thanks for your kind advice
Phil
TBear said:
Way to go Phil!
What you are doing is fantastic. Bugsy will likely be referreed to an ALS clinic close to where he lives. As Al indicated, the OTs PTs and Speech Therapists will help out with his needs. The extras you seem to be helping out with. Just don't forget him and his family when the goiong gets tough. They'll need friends like you to stand with them even if it''s just to visit and talk to him... or at him if necessary.
Keep in touch

T.
 

PHIL

New member
Joined
Jan 10, 2006
Messages
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Re:

Thanks for your help. you advice is greatly appreciated.
We are having a fund raising event in Feb. and expect in excess of 250 people to attend. plus we have Friends of bugsy wristbands that are selling like hot cakes! Bugs has good people around him , for the long haul!
thanks again and god bless
Al said:
Hi Phil. Sorry about your pal Bugsy. Has he registered with the ALS Society? He should also register with the Community Care Access Center if there is one in his area. The ALS Society has the numbers for them all. The CCAC will set him up with an Occupational Therapist and a Physio Therapist who can assess his needs and help you to decide what is covered and what isn't.
If he is going to an ALS clinic ? There are OT's and PT's there as well.
One thing that may not be covered completely is the ALS medication Rilutek. Here in Ont. it is around $660 per month. It may be covered by his drug plan if he has a good one but some don't. Some of the things that aren't covered are small items like button helpers $15. A tool to help you turn keys $12. He may have to replace all the door knobs in his house to handle style instead of knobs. An eggcrate style foam pad for the mattress to stop pressure sores can be $50 to $500. The list goes on. There are websites available with all sorts of handy gadgets that help with day to day life but are not covered by most insurances. If you need more information feel free to ask.
Al.
 

PHIL

New member
Joined
Jan 10, 2006
Messages
5
Re:

Thank you Mike for your kind words and advice. It's nice to know there is such a caring community here on this discussion board.
All the best to you
Phil
Mike27 said:
Hi Phil,
I think what you are doing is fantastic! Good for "Friends of Bugsy"!

The total cost is hard to estimate, some costs are covered (both Provincially and Federally) and others are not.

I have spent, on equipment and home modifications, approx $150,000. Mind you, I've had the disease for quite a while and some of those costs were recovered. BUT, I had to have the money up front. The costs were recovered after the items were purchased.

Things like wheelchairs with adaptive devices could run you in the range of $7000-$20,000. Home adaptions can also be pricey, but can be claimed as a medical expense.

Your friend Bugsy, has a tough job...he must look down the road at what he may require. This is difficult for someone newly diagnoseded. You, as his friends may have to help him. He may need cieling track lifts, bathtub lifts, wheelchairs, walkers, ramps, wider doorways, a different vehicle with a ramp, electric bed, etc etc. It's a helluva lot to take in...

The ALS Society can help you guys identify some needs for Bugsy. Just don't overwhelm him with decisions at this stage. If he's like me, it took a while for the diagnosed to sink in. But stay ready with answers and keep up on types of equipment.

What you folks are doing will certainly benefit Bugsy! He's got some good friends!

Cheers!
 
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