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captaingary

New member
Joined
Jul 20, 2018
Messages
4
Reason
PALS
Diagnosis
06/2018
Country
US
State
fl
Hi All. Very new to all this. Symptoms started about 7 months ago. After 4 Dr.s and 3 states they confirmed what I suspected from the beginning. ALS. Got to say it's harder on the people around me than it is me.
Got a few questions.
1. What legal forms do I need to prepare while I still can? Will. Do not resuscitate. Living will. Any place I can find them online and download? Need to be notarized?
2. Just started Riluzole. Any feedback on effectiveness or side effects? No insurance, just medicare. Paid $170 for 120 pills. Any suggestions on how to cut cost?
3. Starting clinical study on CK-2127107 Reldesemtiv next month. Anyone been on this drug?
4 Doing another clinical study on DNA. Since there is no ALS in my family, I just donated DNA for baseline of ALS.
Sooo many questions. Won't take up your time with them now. Hope I can find any replies. To say I'm not real sharp on computers would be an understatement.
Thanks in advance
Gary
 

Nikki J

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Mar 22, 2012
Messages
7,933
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Welcome. So sorry you had to find us though.

There are stickies ( important posts) at the top of the general forum that may be helpful. Read them in little chunks.

The exact papers vary a little by state but after you decide about advanced directives and such it might be worth a visit to a lawyer. An actual DNR is a form your doctor does for you

I tolerate Riluzole very well. I had a little nausea at first but it quickly vanished. I believe it has slowed my progression. My doctor agrees. Current research seems to indicate it does most at the beginning and the end

That actually sounds like a good cash price for riluzole. You don’t have a part d to your medicare? Do you have a supplement plan?

One of our members was in the trial for the predecessor to reldesemtiv. I think he felt positively about it

Thank you for doing the other study. These samples help a lot

Feel free to ask and also browse and use the search function

Post often!
 

KimT

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Extremely helpful member
Joined
Nov 18, 2014
Messages
3,519
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
My first suggestion is to get a Medicare Supplement (Plan F) during the next open enrollment if you don't already have a supplement. The reason is that Medicare only pays 80% for durable medical equipment such as BiPAP and power wheelchair. These can be very costly and you will absolutely need both for your comfort and quality of life. I chose Florida Blue because they were well known, financially sound, and their record of premium increases was reasonable. Check with the various Plan D plans for your drugs.

All your legal forms should be notarized. Depending on how complex your finances are there are paralegals in Florida who can help you with your forms or you can go to an attorney and get them all done at once.

I would establish a connection with your local ALSA support group. They provide various presentations from vendors of equipment you will need.

Don't try to do everything at once. Take care of your finances and legal forms first. Make sure you have a POA who knows your finances and can act on your behalf if you cannot. All of your bank accounts, IRAs, 401ks should have a beneficiary and your checking account should have a specific power of attorney as some banks do not honor general POAs, regardless of the law.
 

blitzc

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Joined
Apr 20, 2018
Messages
242
Reason
PALS
Diagnosis
01/2018
Country
US
State
OH
Welcome, Gary. I send prayers for strength during this time.
I am newly diagnosed in January 2018. I found Riluzole, like many others here, made me nauseous. I had to take an anti-nausea medication until my neurologist told me to just take it with food instead of an empty stomach as prescribed. No problems since.
Cathy
 

beauty4everyone

Distinguished member
Joined
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Messages
163
Reason
PALS
Diagnosis
04/2018
Country
US
SOME THINGS TO PONDER -
The bank where we have an account notarizes free. Check yours.
Called two different local hospitals, they mailed "directives" to me free. ( Have yet to compare them.)
There are two different types of Power of Attorney - one for "property , investments. etc. - One for healthcare. You'll need both. Get documents for your state.
Some may be online. I wouldn't fill them out there. I don't consider it safe, but that's just me.
Call every pharmacist you would do business with. Prices vary considerably. What you paid sounds relatively right. Check anyway.
Sorry you need to be here. Hold fast. B.
 

lgelb

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Messages
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Lost a loved one
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WA
Welcome, Gary. Check goodrx for the lowest prices near you if you are paying cash. As Nikki says, this is overwhelming so start with some reading like the stickies, get paperwork taken care of, stay ahead of your equipment needs and live your life. I gather your family could use some support from the caregiving side, so certainly encourage them to look into local support groups, Facebook groups etc. and your CALS are welcome here as well.

Best,
Laurie
 

KimT

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Messages
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Reason
PALS
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South
I checked GoodRx and one Canadian pharmacy that still ships. Both cost more. If you plan on staying on Riluzole, I'd start comparing Plan D policies and find one that you can start during open enrollment. Try Silverscript.

Here's the link for comparing plans

https://www.medicare.gov/find-a-plan/questions/home.aspx
 
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lgelb

Forum Supporter
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Messages
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Totally, Part D is better than cash. I was speaking only for the interim; thanks for clarifying, Kim.

Also, since others not in FL may read this, note that in some states, you are eligible for Medicare Advantage plans (Part C; include both drugs and medical), and those are often a better deal.
 

Diane H

Senior member
Joined
Sep 28, 2013
Messages
636
Reason
PALS
Diagnosis
11/1985
Country
US
State
Indiana
There are many places online where you can download the forms you need for free. Just Google "Living Will Florida". The Living Will is directions for your doctor about your choices. You need to discuss your choices with your doctor because he may have moral or ethical concerns about following them or with the medical appropriateness of any of them. Living Wills are legally binding in most US states but, in spite of efforts to pass a national Living Will form, one state's Living Will form may not be honored by another state. For example, one state may require only one witness signature, another may require two or none. If you live in different states part of the time, you need to check both states requirements. If you travel to other countries, check them, too.

Florida also recommends a medical power of attorney. In Florida, the official name for this form is a designation of health care surrogate. This is a legally binding form where you designate someone to speak for you (legally the same as if you were speaking) if you are completely unable to speak or otherwise communicate your wishes. Because a Living Will cannot anticipate everything that could happen to you, this form allows decisions to be made at the time they have to be made, and with recognition of all the variables such as new treatments, family changes, financial changes, etc. It requires the person named or their named substitute to be kept up to date on your wishes, just as a Living Will does.

Another form you may want is an Out of Hospital Do Not Resuscitate. Paramedics and ER's are required to do everything possible to keep you alive. This form allows them to provide all needed care and comfort measures but not CPR if your heart or breathing stops. This form is for terminally ill patients and requires a doctors signature. It is especially important if anyone calls 911 for help. It allows care to be given while you are transported but allows you to prevent CPR (generally prevents intubation and ventilation, cardiac defibrillation and cardiac drugs).

You will also want some variation of a financial power of attorney to allow someone to sign your name if you can no longer write. It can be set up for simply paying routine bills or include paying taxes, managing investments buying and selling real estate, etc.
 

Wilson2009

Distinguished member
Joined
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Messages
176
Reason
PALS
Diagnosis
01/2017
Country
US
State
KS
Welcome to the group, Gary. Sorry for your diagnosis.

I would recommend checking with legal aid before you contact a lawyer. Legal aid in most states provides free services to those on SS including wills, power of attorney and living wills, regardless of income.

Given your, username, did you serve in any branch of the armed forces for at least 90 days for other than training purposes? ALS is a presumptive service-connected condition. If you served, contact the nearest PVA service office, which is most likely at the nearest VA medical center. Once a claim is approved the VA will cover all you needs.

Dave
 

Larrytbm

Active member
Joined
May 13, 2017
Messages
96
Reason
Loved one DX
Diagnosis
05/2017
Country
US
State
Tx
I would like to second what Diane H stated about a DNR. Here in Tx the state has a specific OOH-DNR form. I have been told that EMS and hospital ERs can ignore a Living Will and other documents. Hence the OOH-DNR. My PALS doesn't want a Trach, yet without this form, they could put one in and getting it removed later could become an issue.

Also, I keep a copy of the legal documents in the glove box of the car plus copies on my phone.
 

KarenNWendyn

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Messages
2,830
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
Welcome Captain Gary. Yep, take care of the legal stuff first. My Neurologist office gave me a POLST form (Physician orders for life sustaining treatment) which is registered with the state of Oregon, and a bright pink sticker with a registration number goes on my fridge (for paramedics). Each state probably has their own version of this.

I consulted an attorney for the Advanced Directive and Durable Power of Attorney and Health Care POA. A copy of the Advance Directive is now on file with my neurologist, my internist and my local hospital. I think an Advanced Directive and Living Will are similar, if not the same thing. All these documents have been notarized.

Make sure your spouse or other next of kin has a copy of all your bank account numbers and any investment account #’s. I made sure my spouse was a joint owner on all my bank accounts.

I gave a copy of a note from my neurologist with ALS diagnosis to the social security office and got on SSD and Medicare promptly. I consulted with a health insurance broker to get a supplemental plan (Plan F) and a prescription plan (Plan D).

Best of luck Gary.
 

captaingary

New member
Joined
Jul 20, 2018
Messages
4
Reason
PALS
Diagnosis
06/2018
Country
US
State
fl
Thanks for the info. Sorry it took so long to get back to you. Life gets in the way. Got to live it to the max while I have it
 

wishmobbing

Senior member
Joined
Dec 5, 2017
Messages
727
Reason
Lost a loved one
Diagnosis
07/2017
Country
DE
State
Germany
Hey Captain! Welcome to the forum. I see you got your priorities straight living life. :)
 
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