Best friend just diagnosed

manyakaye

New member
Joined
Aug 8, 2021
Messages
5
Reason
Friend was DX
Diagnosis
08/2021
Country
US
State
PA
City
Moosic
My best friend was just diagnosed with ALS. I am interested in knowing how to best support her journey. Obviously I am heartbroken for her and devastated with the prospect of losing her. Unfortunately she lives in Atlanta, GA, and I live in Scranton, PA. I have made plans to visit in about a week, and I am prepared to visit as often as necessary, but I wonder if there are other things I can do from a distance when I am not with her. Her husband and son will be her primary care givers and I would like to be as supportive of them as possible as well.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,859
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
First being their friend and staying connected is most important.

what they want and need will of course change. My sister was diagnosed beofre me and lived in anpther state so I have sort of been in your place. Early on we set up a lotsahelpinghands account. If they want one you could administer that. It is useful to have in advance of needs and then when people say let me know what I can do you can send them a sign up link. For my sister that worked fairly well for meal dropoff not so much for other things

let them know when you are not there you would still like to help but mostly keep being their friend and if communication gets challenging and it is harder for them to text or talk still send them messages and let them know they don’t have to answer all the time. Above all remember they are still the same person so when you get together try to treat them the same, still share confidences and try to do things together as you used modified for their abilities
 

manyakaye

New member
Joined
Aug 8, 2021
Messages
5
Reason
Friend was DX
Diagnosis
08/2021
Country
US
State
PA
City
Moosic
Thanks for your input. This is so new to me and I don't want to be intrusive. When I see her, I will also ask what she thinks she needs. Tell me more, please, about lotsahelpinghands.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,859
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Lotsahelpinghands dot com. you post things you need help with and people can sign up for a task. Could be deliver dinner on Tuesday. Pick up visitor at airport. Mow lawn Anything. The idea is each person has different skills and availability so they get to pick. I think it works best for more short term needs like chemotherapy but we did get some mileage out of it
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,635
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
I'm so sorry your friend has been diagnosed.
Do point her here for support as well.
Nikki says it so well - keep being her friend first and foremost.
Be responsive more than try and make ways to help.
ALS is a very isolating disease, so if you are prepared to stick the whole thing out, you will be priceless to her 💚
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,420
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
You have received good advice. Letting her know that you are all in the whole way through -- nothing can replace that. Keeping up with her via video, texting her, and supporting her family as well, may bring you all closer. She will be angry, depressed and fearful at turns and will not want to burden you, so you will want to make sure she knows that she can.

Best,
Laurie
 

JimInVA

Senior member
Forum Supporter
Joined
May 29, 2014
Messages
968
Reason
Lost a loved one
Diagnosis
04/2014
Country
US
State
VA
City
Poquoson
The thing that my wife most appreciated were those friends who stayed the course and did not treat her any differently, friendship-wise, than before she was sick. They stayed in touch via email, phone calls and personal visits. Their love did much to keep Darcey's spirits on a positive plane. Those that ignored her and went on with their lives, with no further contact, were points of sadness. But she refused to dwell on them... even when two of them were her own brothers.

So yes... stay connected, stay involved and spend time as you can. Most of all, be honest about what you are feeling.

My best...

Jim
 

manyakaye

New member
Joined
Aug 8, 2021
Messages
5
Reason
Friend was DX
Diagnosis
08/2021
Country
US
State
PA
City
Moosic
Thanks to everyone - I feel like this is all very good advice. I will be traveling to see her in the next few days/week and I feel better prepared.
 

manyakaye

New member
Joined
Aug 8, 2021
Messages
5
Reason
Friend was DX
Diagnosis
08/2021
Country
US
State
PA
City
Moosic
I have now been to visit my friend and have a few more questions - I feel that her disease seems to be progressing rather quickly, but I'm not sure I am judging this correctly. About 18 months ago she started having difficulty speaking and was diagnosed with Sjogren's disease. In the past 18 months she has almost complete lost her ability to speak and eating has become quite difficult. She is also nauseous most of the time and is now using a walker to get around. She has been prescribed a bipap, special shoes, and there has been a discussion about a feeding tube in the not too distant future. I think this is all going too fast. I was planning to visit again in the spring (or even late winter) but wonder if I should wait that long. So sad.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,635
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
@manyakaye I'm sorry to hear this. Please encourage her to get the feeding tube asap as it will really improve her quality of life if she can be easily hydrated and get calories in safely.
She is progressing, but we can't predict anything with this disease as progression speed can change, plateau and jump around.

I would however visit as frequently as possible as you just won't regret seeing her 20 times if she lives a long time, but will regret not seeing her again if things turn unexpectedly and suddenly.

I hope you had some quality time with her on this visit. Make the most of every moment.
 

manyakaye

New member
Joined
Aug 8, 2021
Messages
5
Reason
Friend was DX
Diagnosis
08/2021
Country
US
State
PA
City
Moosic
Thank you so much for the input. I have told her I think the feeding tube would improve her overall health, but I know it must be a difficult decision. I appreciate your reply.
 
Top