How to deal with debilitiating illness?

I think there isn’t much to say beyond what’s in your heart and that the words will come to you when you are with your friend. All you can express is your empathy and sadness but you should take your cues from them as to how much they want others to talk about it. I once heard that instead of saying “let me know if there is anything I can do” it is better to be alert and make specific suggestions of ways you can help. I am sorry your friend and his wife are going through this @Cruiser.

Her: “how have you been feeling? I’m so sorry you’ve been sick. Are you ok? I hope you get better soon. Your husband and I…..”
Him: “Oh, no. I’m so sorry to hear that! How about if I….....or, if we”? (instead of saying is there anything I can do as the above poster suggested.”
The key here is that you don’t really have to say a whole lot. Most people will simply say they’re sorry then he will talk about it as much as HE wants.

About 15 or so years ago, a guy came onto a daytime tv show over here (Richard and Judy). American I think. Anyway, he had Parkinsons and had had a “revolutionary” new procedure done. Some kind of brain implant. Anyway, he sat on the couch, opposite Richard and Judy, perfectly composed and still.
When asked to remove his connection to his implant, he began to tremble uncontrollably. And after he reconnected his device, he again became still!
I thought that the procedure would have become the standard by now.

Sorry, but I have been unable to find footage of this on youtube, but I did find this article.
Hope it helps, friend.

That’s a tough one and I’m sorry to hear that. It might be worth speaking to the Parkinson’s Society they should be able to give some pointers as to how to approach it. I’ve never had to deal with this sort of situation myself so all I can add is good luck!

Treat her as you always would. Show your support for the friend who is her spouse, if you want to address practical issues with her situation. With a debilitating disease like this, a person only wants to be seen as a person and not a disease or what the disease is doing to them physically. I have a mother in law who has been dealing with MS for over a decade. Take her cue and talk to her spouse about things that may require extra planning if you are thinking about inviting them to an outing. She wants to be treated as the person she has always been, NOT as the disease now ravaging her body.

Treat her like a friend.
Don’t treat her like the game “changed”
People are not their disease.

Having a sick child the thing I can say I appreciate most is when people just are supportive can be a shoulder when I need one. Just let your friend know they can count on you to call if he needs to talk or get upset because something isn’t working. Its great to be able to just get the feelings out to another when you can’t infront of the love one you are caring for. Basically let him know he can let it all out if he needs to even if its to get mad for a bit because there is nothing he can do to change things.

Only if it was me. This suggestion can easily be ignored. But I will probably ask my bestfriend to go out and have a drink. I would feel so bad I myself would need my friend telling me he is going to be fine somehow and so is his wife. After a few days I will come and visit her just to say hi and let her feel, ( I may not necessarily use words ) that she or they can count on me for any help that is in my power to provide.

My father died of Parkinsons 4 years ago after a 14 year battle. I sold both of our homes and bought a large house so that my wife, mother and I could care for him in a house without steps for him to fall down. As the end-time began to approach, I found emotional support to be very important from my friends in the form of respite adventure days. My mother and I (I am disabled and retired as a cancer survivor) would take turns on days off. She would go on days out with her friends, and I would go for weekends out hiking or shooting with my friends. I now am caring for my mother 81 years old and beginning to suffer from dimentia. I cannot leave her un-supervised so make arrangements to have friends take her shopping so I can relax and decompress. Accepting the situation and dealing with it as it happens, rather than fighting it is the only advice I can give you to give to your friend. To become a blade of grass rather than an oak so that when the strong winds blow, you bend and deal with the wind rather than try to resist it. As Parkinsons enters it’s terminal stage, Hospice is an invaluable resource for respite time and making the gradual dimming of the light more comfortable for both the patient and the family. Dad eventually was unable to swallow. and we had to maintain a feeding, tube, I had to insert foley catheters, which was a little awkward to do on your own father, but I had experience as a medic in the service, and Dad kept pulling them out. Eventually we checked him into a nursing home where he expired. I like to think that although he didn’t seem to know what was going on, he was more comfortable at home.
To the point, remind your friend of the resources available to home care families, and offer to take your friend on interesting adventures to divert and decompress from the stress of caring for a dying parent. Thank you for asking this question as it gave me time to reflect on that which I face.

I would not treat her or them any differently, except maybe as the disease progresses when making plans with them I would check that the plans won’t be unnecessarily difficult for her. Like check if she might need a wheelchair if you go to a museum together, or prefer an aisle seat when seeing a show, etc. But, I think they will let you know any special needs without you even having to ask.

Moat of all be patient and respectful.