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New member!

CTMary

New member
Joined
May 17, 2019
Messages
4
Reason
PALS
Diagnosis
09/2016
Country
US
State
CT
First post. Enjoying spring in Ct . Started with drop foot, then legs went now arms cannot feed or scratch head. speech may be changing.
Breathing at 50% and just started coughing and phlegm, cough assist last two weeks. As far as meds . gave up on Riluzole. On Radicava since 12/17 and is it slowing the dreaded future or not who knows if I would have progressed more without it or not. No long term data since we are the first patients on it. Our ALS Neuro Md PhD does not know. The work to the wheelchair, car ride 1 hr infusions and back is hard on us both and we wonder if quality of life may be to stay home and with family instead. We are not negative just trying to share info and have fun 99% of the time.This is a great venue to hear from others in the same boat, albeit Titanic in the end.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,365
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Hi Mary glad you are chiming in. I love your attitude

The treatment burden of Radicava if you can’t have home infusions is definitely something to be considered. I always think a crystal ball would be ever so useful
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
1,962
Reason
PALS
Diagnosis
07/2017
Country
US
State
Oregon
Welcome Mary!
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,339
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
Sorry you have had to join our ranks, Mary, but glad you are here. I assume you've asked about home infusions, which many PALS are doing, but since plan contracts change, worth asking again if you're interested and haven't lately.

Best,
Laurie
 

Vincent

Senior member
Joined
Dec 30, 2013
Messages
904
Reason
PALS
Diagnosis
08/2014
Country
CA
State
ON
Welcome to the worst club on the planet. But if you have to be here, it's a good place to be. You are among friends.
Vincent
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,241
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
Welcome, Mary. I hope your Summer is lovely up there.
 

Chuckdobro

Member
Joined
Apr 29, 2019
Messages
15
Reason
PALS
Diagnosis
02/2019
Country
US
State
Ohio
Hi Mary, I have a Hickman catheter placed. The home infusions are fairly simple. No needles or blood involved.
 

blitzc

Distinguished member
Joined
Apr 20, 2018
Messages
116
Reason
PALS
Diagnosis
01/2018
Country
US
State
Ohio
Welcome to our group, Mary.

I also get my Radicava infusions at home. Try if possible to see if this can happen...I think much more common today for PALS than when first introduced. I have a med-port near left shoulder above my heart. I have a nurse from a infusion pharmaceutical company arrive on day 1 to place the needle and then 5-7 days later to change the needle. My husband, daughter, or sometimes good friend take care of giving the medication to me. I first had Option Care as the pharmaceutical company but had lots of insurance issues, so my doctor switched me a few months ago to another company, Soleo. No issues with the new company. Check with your doctor. Time and energy are so valuable to you at this time!

Cathy
 

jonico

Member
Joined
Feb 21, 2017
Messages
23
Reason
CALS
Diagnosis
12/2014
Country
US
State
NY
Hi Mary,

I'm with Vincent on his assessment of this club. Did you ever join a great club when you were younger that was very exclusive and hard to get into, only to discover all the members are real turkeys once they let you in? Well, even though this club is comparably exclusive and the chances of getting in are pretty remote, the club sucks... but the members are pretty amazing.

You live in a beautiful part of the country and seem to have great support and a great attitude. All the best...
 

CTMary

New member
Joined
May 17, 2019
Messages
4
Reason
PALS
Diagnosis
09/2016
Country
US
State
CT
Sorry you have had to join our ranks, Mary, but glad you are here. I assume you've asked about home infusions, which many PALS are doing, but since plan contracts change, worth asking again if you're interested and haven't lately.

Best,
Laurie
Thanks love your Cat I have 3 now. So I am on medicare and a supplement and they do not pay for home infusions...so that would be easier.
 

CTMary

New member
Joined
May 17, 2019
Messages
4
Reason
PALS
Diagnosis
09/2016
Country
US
State
CT
Welcome to our group, Mary.

I also get my Radicava infusions at home. Try if possible to see if this can happen...I think much more common today for PALS than when first introduced. I have a med-port near left shoulder above my heart. I have a nurse from a infusion pharmaceutical company arrive on day 1 to place the needle and then 5-7 days later to change the needle. My husband, daughter, or sometimes good friend take care of giving the medication to me. I first had Option Care as the pharmaceutical company but had lots of insurance issues, so my doctor switched me a few months ago to another company, Soleo. No issues with the new company. Check with your doctor. Time and energy are so valuable to you at this time!

Cathy
Thanks Cathy Yeah like most I'm sure we all do our homework and my husband is my caregiver/secretary and we have Medicare, they only pay for infusion centers not at home too bad!!
 
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