Just an update

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hkohlman

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Jan 2, 2007
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Hi Everyone. Hope this finds all of you doing well. I just thought I would give you a little update about how my dad is doing with ALS. Funny story first, on our christmas tags he wrote from Dad and ALS. I was really glad he still had his sense of humor. Ok here is the yucky stuff!

Every day he is having more progression of his symptons. He is having trouble walking now and can hardly move his right hand/arm any more. Due to this he is having a hard time putting on his shoes and little things like that. My Mom told me today that he had a hard day and could not get his shoe on until 1pm. I guess he tried all morning to do this.If anyone has any sugestions on what we could do to make this easier please let me know. Also, who do we contact to get him something to help him get around easier. He can't even go to my daughters program at school because it is to far of a distance for him to walk even using his cane. :(

Thanks for the support!
Heather
 

Poco

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Or
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Bend
Hi Heather,
We bought comfortable shoes that you slide into. We also have a long shoe horn that helps with other kinds of shoes. I got rid of all the difficult things that made life harder for my husband. No shoes that tie. Velcro straps help a lot. I got the shoe horn at the hospital store. It is probably very stressful and tiring for him to be struggling like that, so I would definately change shoes or anything that causes excess fatigue
Thanks,
Phyllis
 

Al

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Hi Heather. Have you tried your local ALSA or MDA chapter. They usually have loan closets for things like walkers and wheelchairs. I got mine from the local chapter of the ALS Society of Ontario. Not sure about Montana but the alsa.org website has a listing of chapters in the In your Community section.
AL.
 

lcarlile67

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Jan 28, 2007
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PALS
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Wheaton
things to do now

Dear Lady, your dad is going to need things like a wheelchair - and believe me get a doctor script soon as possible to start the ball rolling - it takes 10 weeks for a rehab power wheel chair -- its not just an ordinary power scooter -- he will need a fully loaded REHAB power wheelchair -- ( make sure they measure him with the physical therapist and occupational therapist for a CUSTOM REHAB POWER WHEELCHAIR - that has neck support and power legs, and gel seat or some sort of memory foam seat, and that the seat can recline, etc .. talk to your ALS/ MDA people to help you when you get the wheelchair -- don't settle for some run of the mill scooter peice of crap because medicare only pays for one ......

First, you must check with your insurances - do they have medicare ? if not, go now and apply for Social Security which takes 6 months from the day you file - DO NOT DELAY ! - Medicare only pays for about 80% of the chair in most cases -- CONTACT the LOCAL or REGIONAL ALS - MDA CHAPTER - they often have loaners -- we borrowed a rehab power wheelchair at no cost to us --- , you will need a transfer belt, a walker, a regular wheelchair, a hospital bed with one of those trapeze bars, one of those toilet seat things in wal-mart pharmacy for about 20 bucks that raises the height of the toilet that is a white 6 inch heavy duty plastic ring that sits in the toilet, a male bedside urinal, a TUB TRANSFER BENCH - not just a tub seat, --

Clothing - you need to have easy pants like sweat pants - and t-shirts - boxer undies that are comfortable, shoes that are easy, - because comfort counts - and caregiver ease to help dress the patient is all important. Talk to doctors about getting TED HOSE to help prevent DVT - also don't use compression stockings laying down unless advice by doctor ...

- Oh my gosh - you need to get the ALS MANUALS and VIDEO TAPES free of charge to all ALS patients from the Local ALS chapter. SCHEDULE an Appointment with an ALS Patient Coordinator as soon as possible - they come to your house !

You will not believe how fast this can progress -- BE READY to HELP YOUR MOTHER -- I am doing it all alone, with no help - and believe me - your mother is going to need all the extra help she can muster up.

An ALS doctor put us on this daily regimin of vitamins -- 300 mg CO Q 10 - 400 IU Vitamin E - 1 gram Vitamin C - and 25,000 IU of Beta Carotine -- TALK TO YOUR NEUROLOGIST and DOCTOR before doing any vitamins ... They say this vitamin combo is very good to assist with keeping the ALS symptoms from going faster .... ALSO, GET on RILUTEK soon as possible, by doctor prescription -- as RILUTEK prolongs survival rate by about 3-6 months (those are 3 better months on the front part of the disease not the latter stages - it helps preserve better physical function, longer).
 

thomkat

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Jan 25, 2007
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Reason
CALS
Country
US
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NC
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Wilmington
Hi Heather-

This is my first reply to anyone...I'm also a newbie to the group. My husband was diagnosed in June 2005.

When dressing became difficult for him, one of the first things our ALS clinic gave us was a long shoe horn and elastic shoestrings. the combination of these two made putting on his shoes so much easier and he was able to continue doing it himself for a while.

We also got a "loaner" scooter/wheelchair while deciding on which "custom" power wheelchair to purchase. This was great and helped us to continue normal activities like our kids games, dining out, etc.

I guess my piece of advice would be to always try to stay ahead of ALS! Get a walker before he can no longer use the cane! Order the power wheelchair before you absolutely have to have it! Modify your bathroom before he can no longer shower/bathe himself...It alleviates some stress if you know you've got a plan before you actually need to implement!

I'll have lots of questions for everyone later...
For now, love and prayers for all of us.

Kathy
 

emjoi

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Jul 19, 2006
Messages
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Lost a loved one
Country
Aus
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Vic
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Melbourne
I'll agree with what folks are saying above.

Grab everything you can, well before you need it. They day will come and you'll find yourself on some waiting list. My mother had a wheelchair and a walking frame and other stuff all stored in the garage. Much of it never got used, but some of it did.

Don't sit back and "Not be a trouble to anyone". Don't let doctors decide what to do next... you are just one patient among many to them. They aren't lazy or cruel, but you aren't the only people on their minds. Push for help and advice and consultations.

Get dietary and eating advice early. Alot of people seem to be suprised by choking episodes and how to adjust food and eating to deal with it. Don't just guess solutions, talk to someone.

Eventually you'll need a Peg. Know where you can get it, know the procedure to booking in to do it.
 

hkohlman

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Joined
Jan 2, 2007
Messages
42
Country
US
State
Montana
City
Billings
Hey Thanks!

Hi Thanks to all of you who have responded so far on this issue. I have some good news. My Dad was able to attend my 8 yr old daughters program today at school. It took some time for him to walk down the hall but he was able to do so as long as he had a wall beside him to help his balance. I think he really enjoyed the program. I am so glad. I will let my mom know these things and I am already in the process of registering with the local mda association. So far we have no als support yet in our area! I am going to try and start one though. If any of you have ideas on how to get one started I have my ears wide open. Well better go my daughters will be on the news with the weather guy in a few minutes. Local TV stars 3 times so far since school started this year. Thanks again!
Heather
 

Al

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Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Heather. If you want to start a support a support group call the ALSA. I'm pretty sure there is chapter in Montana. Ask them how and tell them you want to start one and they should have some information on it. They may able to give you names of others in your area that have ALS or at least have them contact you if there are privacy issues. Good luck. AL.
 
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