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CTMary

New member
Joined
May 17, 2019
Messages
7
Reason
PALS
Diagnosis
09/2016
Country
US
State
CT
City
south windham
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.
 
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
 
Welcome Mary!
 
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
 
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
 
Welcome, Mary. I hope your Summer is lovely up there.
 
Hi Mary, I have a Hickman catheter placed. The home infusions are fairly simple. No needles or blood involved.
 
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
 
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...
 
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.
 
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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