Trying to support from a distance....

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New member
Nov 3, 2007
It's been a while since I've posted on here and I need to get back into the swing of things. My Dad has been diagnosed with PLS and is really stuggling with it both mentally and physically. My Dad, my sister (Stephanie on this site), and my Mom (JerryAlex on this site) are all about 1,000 miles away in Alabama. I want so much to be there for all of them. It is very difficult to know how to be when I'm talking to my Dad, especially after getting updates from my mother and sister who are having to confront the situation head on. They need as much love and support as he does right now. My sister tells me every time we talk that she wishes I was there, but it isn't possible right now. The only saving grace is that my father finally starting seeing a doctor at Duke so it forces him to get out of the house and get up here and visit me and his grandchildren (which seem to be about the only things that brighten him up these days.) I am so proud of my sister who has really become an advocate for fighting this horrible disease. I feel like there is more that I can do, but it is difficult being so far away and so busy with 2 children under the age of two. I would love some perspective from anyone who might have some to offer...
hello sabdmb

first of all i do know your sister stephanie and all about your father.
your sister is doing a brilliant job and doing what she is able to do, i am sure you also are doing everything in your power to help but being so far away and 2 young children to care for you have to be realistic. pls is not fatal and you will have many years to show your support and in the future if circomstances change and kids get older you maybe able to do more.
just letting your father know how much you care and talking to him on the phone when you can will help. could you go see him once a month say for a short visit and let someone look after the kids? you could give your mum and sis a short break,i'm sure they would appreciate that. just do what you can, every little bit helps.
take good care
Caroline is right. PLS is not fatal even though it is debilitating.

If your dad's day is brightened up with your kids, send him pictures constantly. Let him hear their chatter over the phone as often as possible. You may even want to send him videos. With such a disease having bright days is so important.

I know that with my mom, my children are what keep her going.

Wishing you and your family all the best.
Good things are great for PLSers .Dont be Controling and Bossy ,dont make him feel incompetant or incapable ,let him find out by himself . People who wont let you try things by yourself make you feel like your incompetant ,or invalid . If you give up, Your done . I have a neighbor who did that with me and i finally told him ,dont treat me like im an invalid ,im not ,to me this is Disrespectful and makes a person feel low .Encourage them to do what they can ,without interference . You will do them alot of harm by being a control freak . Geo
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