[kathryn-f-kennedy]

Any Support Groups around Tyler/Longview/Kilgore, Texas?  I have ALS and my husband could really benefit from the support!

[kathryn-f-kennedy]

Thanks for the info.  Will pursue!

[kathryn-f-kennedy]

please keep me posted about this study.

[kathryn-f-kennedy]

We are all different but I like my PICC line better!  Had a Mediport previously.  I too will continue with Radicava.   Fortunately it’s on my Medicare Formulary!

[kathryn-f-kennedy]

Please provide update on the Stem Cell treatment when you can.  Thanks!

[kathryn-f-kennedy]

I have been on Radicava for 14 months, as well as Riluzole.  No side effects whatsoever!

I am on the same regimen as most of y’all —14 days straight, followed by 14 days off for the 1st month.  Thereafter, 10 Infusions in a 14 day period followed by 14 days off.  2 bags are required each treatment and it requires about 1 hour for both bags and 20 minutes on each end for prep, etc.

Living in Northeast Texas, there is no Infusion Center  licensed to administer Radicava.  Fortunately, we do have a Parish RN (Sue) assigned to our church and she drives to my house (60 miles round trip), adhering to the above regimen, since January 2019.  Plus Medicare covers the cost!  We are so blessed!

My only issue was my Mediport which was worn out after that much use.  I now have a PICC line inserted and it is so much easier!  I simply have someone wrap it up in Saran Wrap while showering!

I am a CR9orf72 (genetic) ALS person, so my response could be different.  But when I reflect on the other 6 relatives who had ALS, I firmly believe it has been beneficial in slowing down the dx process.

I am approved for Hospice but delaying admission to continue my Radicava and Riluzole for at least another 2-3 months.  Will see how it goes from here!  I am indeed declining and my ALS-FRS has finally declined to 25 out of 50 which means Medicare will not approve me past June of this year.

Hope this helps!

 

 

 

[kathryn-f-kennedy]

1.  A thick Gel pad cushion which elevates me sufficiently to stand up independently (although usually on the 3rd trial).

 

2.  Curved utensils and extra long silicone washable straws that come in a carry bag.

 

3.  A wash mitten that has a side pocket to slide a bar of soap into.  Then you put the mitten on your hand (well my husband has to) and lather up.  (I am 1-handed).

 

4.  Weighted ink pen with a large rubber grip.

 

5.  A side grab bar to help getting in/out of bed.

 

And hopefully my Power Chair which should arrive in 2 weeks!

 

 

 

 

[kathryn-f-kennedy]

Absolutely!  Please count me in!!!!!! And thank you so much!

[kathryn-f-kennedy]

Extremely helpful and informative!  Thank you soooooo very much!

[kathryn-f-kennedy]

I too have genetic ALS due to a mutation (CR9orf72).  I am the 7th family member from my Mother’s side of the family (great grandmother, her 2 sisters, and an aunt, and a 1st and a 2nd cousin).

Have 1 surviving sibling with 2 sons and they are not willing to be tested.  I understand their reluctance — not a damn thing they could do about it as of now.  BUT they will be tested when a delay or cure is discovered which is imminent l!