My son is bedriden with MS. He is cheerful, eats well and sleeps well.
In his bed he refuses to work on his touch his swallowing, and speech.
I have no clue how to handle this.
PLZ advice
Refuse to do anything: My son is bedriden... - My MSAA Community
Refuse to do anything
Written by
lemtouni
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55 Replies
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@lemtouni so sorry your family is going through this. Really just love him if he asks for help you can be there for him
Thank you very much
Thank you
How long ago was he diagnosed?
Is he on a dmt? How old is he? (If you don’t mind me asking. I’m not trying to pry)
No he is not on a DMT. He is 31.
Depending on where you live, there may be some home visit therapy available through social services or your insurance. For instance, when I was sent home from skilled nursing, PTs arrived two days a week for 6 weeks, OTs visited twice to make sure I knew how to navigate in a wheelchair and transfer to bed and toilet. My sister, scheduled for hip replacement, has already received a visit from both PT and OT to teach her skills and exercises she'll need when she comes home from the hospital (she is not going to skilled nursing first). In both cases, insurance paid these costs.
In my rural area, and many urban regions as well, social service agencies provide transportation to therapy and doctors appointments for those whose income level qualifies.
Ask your son's doctors what services are available for him. Again, depending on locality, insurance coverage, and other factors, there may be a way to have him transported to therapy and returned home. Contact MSAA in your state to ask them as well! Because you found us here, you are obviously his advocate and will find some assistance for your son. None of this is easy, not for you, not for him, so come back when you need our encouragement. And please do let us know how it goes for you.
I was thinking this too, but not sure of his age. For my kids, therapy came to our house and once they aged out, I could call if I noticed an issue (speech was one we had a concern about later on) and I could get another evaluation for the program for older children. With the pandemic, therapy’s sessions went online, but we needed a therapist’s hands on the kid, so we continued the home visits.
If he is bedridden he can qualify for a motorized wheelchair trough insurance usually.He really needs to find a way to motivate himself to get up and walk even just a bit so he can transfer from bed and shower, etc. or he will never achieve independence. He may be fine with that now cause you his parent are still there. He may not be with virtual strangers when your gone. If he's not motivated by that it's hard to really do much. Is he scared at all? I bet he is. Seems like he may almost be paralyzed with fear if he says in bed. Can he get out of bed if he wants to? With MS it is so hard to gain strength back.
Thank youHe can get out of nbed if two people holds him.
Cannot know for sure from here but I think he probably needs professional counseling. I don't know what I would do without my counselor, especially since my mother died.
I am progressive MS in a power wheelchair. I can walk just a bit with a walker which I religiously do four times a day so I can do transfers and go to the bathroom myself. I live on my own, which I think some of my doctors don't think is a great idea....
I'm think an occupational therapist could help a lot with figuring out how to navigate this life
Thank you. You are inspiring. I will seek counseling for him. I hope he will comply.Take care and make it a now moment.
I was age 34 when finally diagnosed. Am 43 now. My first counselor was terrible...no connection. My 2nd was much better and free thru Catholic charities and she was great although maybe not super skilled. My current 3rd one is absolutely great. Not sure what I'd do without her since my mom died and wife decided to leave me.If he is resistant once it starts it probably means it's not the right person. Don't be afraid to shop around counselors are a dime a dozen. And, some just won't fit. The good ones are typically very busy.
Welcome to this wonderful group of caring people lemtouni As you can see, others have a lot of great info/ideas for your son. Keep us updated how you/your son gets on with the suggestions given. I hope they help.
I think you have received great advice. I cannot add anything except warm, loving thoughts. Please do stay in touch with us!
why is he like this? does he need to talk or cry, there has to be more, what is it. Around the age I was diagnosed.
He is very cheerful. He says MS is the best thing that happened to him. He seems to be happy. Never complains. Eats well. Sleeps well.Likes to go to the gym to do weight lifting.
ask him how much he can squat?
Suggest Tecfidera, an older med 2 X daily pill. Easy to take and it is something, Yes, it is a Disease-Modifying Therapy (DMT).
Sure. Two people have to hold him in order to stand or squat.
Maybe get him into out-of-house therapy where he will be forced to exercise to avoid embarassement.
He goes to tge Gym for weight lifting
The therapy/exercises I'm refering to (and there are some) involve swallowing and speech. I do some for speech.
Does his doctor suggest another dmt? I know i was feeling overwhelmed with symptoms when i was diagnosed and got on meds and the meds gave me a huge boost.
No.
What do you mean bedridden if he goes to the gym? Maybe he feels good/confident about himself there?
Maybe ‘tough love’ to get him to do things? Maybe counseling for you too? Does he have an MS neurologist?
I lnow i felt significant relief when i was diagnosed with MS because i finally had an answer to what was causing my symptoms
I felt the same way after being finally diagnosed and mis-diagnosed. Isn't it weird how it works that way....my MS doctor said she has seen people totally breakdown when first diagnosed but I was her first the smiled 😆. I didn't know much about MS at first. I asked her if I was going to die I remember...🙃
Bless your hearth. I think i do need help too. I do not talk to anybody. Will doTks
If i do not get him out of bed he cannot do anything. At the Gym coaches help
Maybe he can find a friend or 2 at the gym. Or someone in same situation or worse that he can dedicate some time and some thought to. Does he see a doctor? Has anything been recommended? (Medication-wise) Maybe a project. Like devising a workout plan or something. Does he do computers? Maybe take an online class. Online college?
Thank you so much. These are great suggestions
I am going to be the devil's advocate here.. I'm not usually, but I think some of these things need to be asked or told..
He's 31.. diagnosed finally with rrms or what? I would be cheerful too if someone made and served my meals. and I could go to the gym whenever I wanted.. 31.. he should be aware by now that you (his parents) will not be there for him forever. Then what will he do?
He has to find some sort of independence.. for himself and both of you.. does he not see that you both need a break too?
He should be working on learning to do things for himself.. applaud him when he even attempts it.. things for you.. "thank you" goes along way for helping you do things for him..
Yes, he needs to be on a DMT.. to try to regain his mobility, or at least some.. if he can..
Sorry.. but he needs someone or something to ignite him to try.. something..
I myself have Progressive MS now.. and I have fought this Monster since my first system at 17 and I am 64 now.. I am fighting to not go into a wheelchair.. but it seems I am fighting a loosing battle.. But.... I am fighting.. as he should do..
sorry if this sounded harsh, but I felt it had to be said..
all my love and prayers to all of you
MsBoo
Thank you so much. Yes I wamted to hear this. I will share it with him. I went as far as telling hom that s what he eanted. To be taken care of.
The PT tells me he puts efforts into rehab.
Thank you so much.
MsBoo - I'm glad someone had the guts to say what you did - it can't always be assumed that people don't do things because they can't - sometimes it can be because they don't want to and if they're being waited on hand and foot and being treated like a fragile little butterfly and taking advantage of it then Yes, sometimes a bomb does need to be put under their backsides. There are plenty of people here who have high levels of disability, but they still get on and do what they can - and this young fella needs to join their ranks. If he can get to the gym - even if it is with help - then he does not have to spend all of the other hours of his life in bed and doing so is probably reducing his capacity to do things for himself even further.
I totally agree with getting some counselling involved, and finding ways to get him out and about a bit more. It will no doubt make him tired or exhausted, but he needs to do what he can to avoid spending way too much of his life in bed being waited on by others - and if he is taking advantage of the situation or has issues with depression then a good psychologist should be able to uncover this and help get thing put in place to deal with the situation.
Maybe he can learn/do some cooking?
Yes. Thank you. His hands go all over when he tries to do things. His involuntary movments come on the way
So no sharp knives-Maybe some weighted utensils, cuff weights on his wrists for more control
I take baclofen to control spasticity with my walking and it works for me. Many on this forum have written that they also take baclofen
Thank you. Does it help your walking?
Yes it helps noticeably with my walking
Thank you zillionBless you
He maybe can prob stir a thick sauce or batter. He could meal plan and put ingredients together
Wide handled utensils
👍👍👍good!!!
Now that I have been the devils advocate, welcome to our group. We are a helpful bunch and some like me can say things that are hard to hear, but mean well.
I have had MS for 46years, diagnosed in 95.. yes.. long fight.. now have PPMS almost in a wheelchair..... having surgery on my tailbone because I have lost the (what I call) the mushy part between my spine.. pushing or pinching a nerve that goes to my legs, so I am falling every time I try to walk...... and life goes on.. I fight some more.. the Monster cannot win..
Good luck to you and yours.
I personally would try another dr.. there are some that would put him on medications.. and home therapy..
Thank you. You sound a strong person.Did you work? Did you get any help from the state or the Gov?
Your message had ignated a thinking process that led to some distance. I read it to my son and it did something to him too. He is more collaborative to do his rehab when not with a coach or therapist.Bless you
Yes, I was a manager at Williams Sonoma for a few years after I got out of the military.. I am 100% disabled from the military.. I have done alot of things in my life.. but now I try to encourage people to not give up on life, no matter what hand they have been given.. I have been mentally and physically abused in my life, and have gone on to help others to turn their lives around.. I have MS, hashimoto's thyroid, type 1 diabetes, PTSD, depression.. and a few others.. but I think that is enough.. oh and the other that is giving me a hassle is degenerative disk disease.. hence a crooked spine and stuff like that..
I am here often if you just want to vent.. about anything..
Thank you for your blessing..
I wish all the best to you and yours..
MsBoo
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