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LisaM

Member
Joined
Jan 9, 2008
Messages
21
Reason
Loved one DX
Diagnosis
11/2007
Country
US
State
California
My father was diagnosed with ALS a few months ago and we have been dealing with his progressing symptoms for nearly 2 years. His demands are growing and needs are constant as he can't find comfort in his body and has no independence. Ideally we look at the bright side of what we do still have now, but our bodies are tired of lifting and pushing and would like some practical recommendations on what y'all are using out there to aid the physical burden that caregivers encounter?

The equipment offered at medical supply stores has not been nearly sophisticated enough to really help, but until now it's all that I had been able to find. I recently saw the Quest magazine on the MDA website. In it were advertisments for an array of equipment and suppliers that offer products which look helpful.

What army of equipment do you all use to help and would you recommend for use? Though I don't want to consdier cost, if Kaiser/Medical/Medicare covers any costs for this it would be useful to know...

I am so glad to have found this website. I feel like I have a place to come to with a number of people who have been where i am. I really don't feel like I need to figure it all out on my own.

Thank You.
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
Lisa,

Have you checked with your local ALS Association's loaner closet? This could be a viable option for your family with no cost out of pocket.

We were just delivered a Roho cushion for hubby's dwindling behind. Looking on internet the cost of cushion is anywhere from $480 to $700. We also got a wedge for the bed.

I would advise trying to look ahead to anticipate what equipment you might find useful so the Association can have you in their pipeline for a loaner.

The cost of any product for the disabled is outrageous...

Also, have you looked for a charity org in your area that refurbishes used equipment? They sell for less and profits go to charity.

Good luck!
 

Al

Legendary member
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
We have a commode chair, hospital bed, wheelchair, bed pad can't think of the name, and a Hoyer lift all from the loan closet of ALS Ontario. Contact your local ALSA , they can tell you what they have as well as what you might need.
AL.
 

Kevinski

Active member
Joined
May 23, 2006
Messages
70
Reason
PALS
Country
CA
State
Alberta
help is out there

Hi I live in a small rural community outside Calgary,the community has been great.I was Dx in june 07 so far just speech has gone.But the local lions club renovated or house to make it wheelchair accessible,we did not ask they offered the work they did was done by volunteers and we would not have been able to afford to do this on our own.It seems if you have any kind of income you do not qualify for any government assistance .It seems that you have to be on welfare to get anything and the people in the middle get nothing.I have been fortunate with the help we have gotten,Maybe check and see what your local service clubs might be able to help with .Take care and good luck ...Kevin
 

ilovemymom

Member
Joined
Jan 2, 2007
Messages
14
Reason
Loved one DX
Diagnosis
10/2006
Country
US
State
Happiest Place on Earth
Hi LisaM-
Welcome to the forum. It's great that you are researching now what equipment you may need in the future.

My mom was diagnosed 10/06 with Bulbar onset ALS and it wasn't until this month that we needed to bring in equipment to improve mom's quality of life. If it weren't for this forum, we would have settled for whatever Kiaser offered us - all just fine, but there is a ton of specialty equipment out there that Kiaser will cover if you just know what to ask for.

Mom has benefited from the following:

Respironics BiPap with nasal pillows (there are a ton of different masks to try - nasal pillows, nose mask, face mask - try them all and make sure to get the one your Dad likes best)

Devibliss Homecare Suction Unit - this has been a life saver

Cough Assit

Wheelchair

Foot brace

We are in the process of ordering an augmentative communication device now.

The list may seem long - in general Kiaser has been good about getting equipment to us within 24hrs. of ordering. So far, we have had no out-of-pocket copay (35+ years as a public school teacher has its benefits). The biggest lesson we learned was to get equipment before you need it and space them out over time - we had all of the above delivered in the last few weeks and seeing all the equipment come in all at once was overwhelming - Ativan was the best help for that.

Ask any questions - more often than not, the answer is here.
 

LisaM

Member
Joined
Jan 9, 2008
Messages
21
Reason
Loved one DX
Diagnosis
11/2007
Country
US
State
California
Hey all,

Thanks for these replies. I have not checked with MDA for advice on medical equipment. It seems the demands of every day problems and the multiplying list of essential calls and duties are so extensive that the time to make that call gets lost in the shuffle.

At least my experience with Kaiser has been that I have to know what I want to ask for otherwise you barely get the basics which are not very helpful for us. That's why I wanted to check with you guys and see what I might be able to ask for or inquire about. Maybe the MDA is different and they can lead me for a change. My dad's situation has been limb onset ... bulbar functions seem fine so far.


Yeah, and I agree costs are astronomical. It's so sad to look at the price on this equipment. The more vulnerable you are, the bigger the problems get.

Thanks all for your advice and help. It's greatly appreciated.
 

nspoc

Distinguished member
Joined
Mar 24, 2007
Messages
113
Reason
CALS
Country
US
State
Illinois
Hi Lisa M -

I used to work in LA and my friend with ALS was diagnosed there (UCLA) - she now lives with me in Chicago.

Anyway - Are you on Medicare - They pay for a lot of stuff. Also - I believe you have an active chapter of ALSA there, as well. I know you are at Kaiser - but are you at a specific ALS clinic? If not request a referral to either UCLA or Cedars. When I worked at UCLA we had lots of Kaiser patients for services Kaiser could not provide. Of course you need their permission. The reason I encourage you to do this is because they have social workers and comprehensive teams that help you get equipment, offer avenues for payment, etc.

As far as equipment - we have a commode, Overhead lift (we paid, Medicare/insurance will pay for a Hoyer lift), adaptive silverware, cough assist, suction machine, nebulizer, ResMed VPAP (with 2 masks - one for sleeping, one for eating). We have bed pads with handles that help me turn Pat (by Posey) have gone through several types of gait belts and slide boards (we are past that now). We have a Quantum 600 power wheelchair with arm troughs, tilt-recline, vent/bipap tray and automatic leg lifts.

Pat can eat and talk, but hands and arms are getting bad - legs and torso are shot. She has a computer that she lives on, and we are looking into speech equipment that will also turn on the TV and any other device that uses a remote, including raise and lower her bed.

She has a Flex-a-bed - was Great for getting out of bed when she could get around with her walker. Insurance will pay for a hospital bed, air mattresses in some cases. We also use a "Bed-cane" which attached to the side of the bed and helped her adjust in bed.

Many of the devices are useful for only a while - thus should be borrowed. ALSA and MDA both have loan closets for this. I have seen people borrow overhead lifts, although here in Chicago that does not seem to be available.

I know you are pressed for time - but have you thought about a support group? We share expensive equipment within our support group all the time. One of our family members gave away 2 stairlifts when she no longer needed them.

I know this is probably too much information - that is the nature of ALS. But as someone else has said - get the stuff you need early.

Good luck - Beth
 

LisaM

Member
Joined
Jan 9, 2008
Messages
21
Reason
Loved one DX
Diagnosis
11/2007
Country
US
State
California
Hi Beth, There is no such thing as too much information. This is exactly what I was looking for. I never even thought of adaptive silverware - my dad is still using regular silverware.

After the array of steps we need to go through to get dinner in front of him, cutting his food for him is the last thing I want to do. He ate half his dinner and asked me to cut the bite of food he was about to eat and I snapped about how he had it on his fork in the air and expected me to cut it like that.

After it was too late I realized that he didn't want to put it down because it took so much effort to get the food on the fork in the first place. I cried for an hour for being such a jerk.

I am so grateful in my heart that he can speak, and eat, and breathe but I get frustrated in the moment and aide in taking away that pleasure from him.

Kaiser referred us to Dr. Graves at UCLA a few months ago for the final say in confirming that this was ALS. He has an appt set for April 3 so I will have to find out how I can get the services we need. Not having done this is making things harder.

Maybe even a bed cane would do wonders. Now he wakes me up multiple times in the night to help him turn because he insists with extreme stubbornness to sleep on his side but has no ability to turn himself or slide himself up on the bed.

Kaiser did send us the Hoyer lift out of the blue before he really needed it and wouldn't take it back. Now I am SO glad we still have it. It's a lifesaver.

I desperatley need something to help get him into and out of the showers. The shower chair isn't enough. He can't sit up long enough, it hurts, and he slips. It takes three people to help. Do you know if there is anything for that?

Thanks for all of your advice. I'm sure, unfortunately, one day I will have to refer back to this for all the suction, cough assist, etc. devices. So sad.

I would just like to add that you are a superstar for being such a kind soul to help out your friend who has ALS. It is SO, SO endearing for someone like me to know that there is someone like you out there in this world.

Thank You.
 

Jane

Distinguished member
Joined
Feb 7, 2004
Messages
168
Reason
Lost a loved one
Country
CA
State
Ontario
medical equipment needs

Hello Lisa, reading your posts brings back memories of our families struggle with ALS.
You spoke of difficulties turning in bed for your Pals. We bought some "satin sheets", really just polyester that allowed Lyn to turn on her own for a little longer and also made it easier for us to turn her when that became necessary.
She used a stueben rail on the side of the bed that also helped her to move on her own a little longer.,

Stueben rail is an L shaped piece of equipment, the long side slides under the mattress and the short side makes a rail about 2 feet long. You can position it anywhere along the bedside that works for your Pals.
Hope this is of some help to you,
take care
Jane
 
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