my friend has ms

[boxer95]

please forgive me if this is not an appropriate question for this forum. here goes. she was diagnosed about 10 yrs ago w/the progressive type. at this point can't really walk except from one point to another within reach of support in her house very, very slowly. she's fallen quite a few times. she refuses to use a w/c (except when she has to go out for a dr.s appt. or something else that can't be avoided.) or a walker. she refuses to use a computer. she refuses to sign up for 'the ride'. she refused a free motorized scooter. she sits in her kitchen all day, every day watching tv. i stop over almost every day as do many of her friends. the question...what can i (we) do to get her to be a little proactive about gaining some independence?
thank you so, so much for any help. she's really very dear to me and this is just killing me.

[msdude]

I live with a friend that has MS, its so sad to see him deteriorate right in front of me daily. The only thing we can do is love him and make him as comfortable as possible so he can enjoy his life. Here is a daily routine:
Caregiver 1 arrives at 7am, 3 people in the home need attention daily. She immediately awakes brother 1 (w/ms)  with a smile. Then open curtains, changes his body position and remove diapers/change his bedding. Plus you get bed sores because its difficult to move you around every other hour, unless you pay someone to do that.  Caregiver 2 arrives 7:30 am and sets the table for two people to eat breakfast...cooks oatmeal, with bananas, raisins, nuts, diced apples, and prepares tea and much more. Care giver 2 leaves kitchen and attends brother 2, does same thing to him, change his bedding, etc. Wipe the ****. Now, these people are ready to get fed, Caregiver 1 moved on to mom, and does same thing. Care giver 2 services brother 2 food at table. Then, Leaves and goes to feed brother 1 with MS; he cannot feed himself. Mom is done and is wheel-chaired  (like all) to kitchen to starts her breakfast. All caregives start the wash and laundry duties, changing of the bedding. Then clean them up and wheel them into living room so they can look outside scenery and /or listen to music or TV; Caregivers start to prepare lunch and next setting. Fold clothes and put away; Caregivers goes into Brother 1 room and washes his feet in hot water and peroxide and baking soda; 20-30 min later dry and apply oils.  and he either sleeps or watches TV.  Then its 1pm Shift change and another Caregiver 3 comes to work and feed them all lunch. Then all wheel back to the living room, Except MS Bro; this is read time,  talk time, nails time, hair time, nap time, all  persons are served this way, visitors come by, leave, bring sunshine into home, that's our motivation. Make them feel alive! and not Alone. evening all are served, then TV time and read, talk time, then 9pm, all go to sleep; and next day starts over. I'm the house-keeper. and do much more then what I 'm telling you.  Walk in  peace, and do the right thing, help if you can.

[ErinZoe23]

My experience:::::   My help::::::::My dad got dimentie and me MS and well yes depression is a stage and sometimes a long stage. What i found best for me was NO anti depressants ( but may help yours in her situation) when i couldnt walk or talk and ahd to be watched to eat and bath only 22 at the time trust me i just wanted to shut the world out.. but what ket me going where true real friends. They didnt look at me and my twiching head and body or my slumping against walls or walking slowly. They didnt care i was like that. The best thing i found that helped me pull out of depression was being treated as someone who is not sick, to still go through my everda routine although very lmited and see my friends visit and just b.s like nothings wrong,
My dad was the same way , i treat him no different than when i did before and now he says " Erin, scares me" lol b/c i never took his crap than and wont now just because he has dimentia ( however i do when it is really dimentia and when hes just being him , others ont seem to notice) so he respects me more and listens to me only and will do watever i say cause he know how i am lol and he did the same for me not even a few month ago i was back to not walking.....

i yelled upstairs for help for like an hour and he finally came down and i said i need someone to pick me up im stuck down here and said" this shouldnt be happening to you mothafkr" but he didd not pity me he did not treat me differently.. he picked me up and left the room.

SO in my experience of depression or dealing with a disease , new or not, is give them space trust me when they need you they will come. Treat them like you do everyone , you say she has trouble walking and refuses to use her wheelchair...  refused to used m handicap sticker at 25 untill people told me F it, who cares.. u get ultimate parking nd made jokes about which made me feel better and now i use it. and now with my cane i would not use but im getting a really col one and everyone got me excited saying u can get swords to pop out or a tun gun on the bottom and all this crazy stuff the knew i would like....

dont pity her treat her as she is,,, crack a joke .. ask to go on a walk and be like damn can i hope on that wheelchair with you! you know what i mean> Something to make her put a smile on her face about what she going through.


( also the drug neurotin made a big deal on how depressed and crazy i was.. took them a yr to figure it out wasnt the MS but the drugs i was on. And once off that i was back to emotionally and mentally normally. Anti depressants are good for some but you got to watch real close for those side effects...( i seem to get any and all side effects from anything)

one more thing  start her on a routine. do i workout she is able to do with her..in my experience the best thing was the true friends like yourself who stuck by my side whether sick or fine. Trust me it means a lot. And it only made me mad if people offered me help or pity. All i wanted for months was to sit there with a good friend and laugh and bs and forget about it for a little... it will take time and ultimatel it is up to her

[Lulu54]

In addition to those good ideas, I am of the mind that misery really does love company.  Are there any local MS support groups you might get her  to attend?  I realize at first it would probably involve one of you going with her, but she might respond well to knowing that there are other people out her who can relate to her and understand ....

What is the chance that you can get her involved with use a computer? My dear fried DJ and I connected initially via computer - she  sat in her wheelchair for 20 years thinking she was the only one in the world going through what she faces and it made such a difference to her once she connected with others with MS.

How about hobbies or other outside interests that can be groomed?  

Remember, it has taken her ten years to get to this point and she won't be turned around instantly.  Be patient,  and keep being there for her.  She is lucky to have you as a friend.
best. Laura

PS this is the perfect place to ask this question!  

[boxer95]

thank you both. i will let her MDs know...i think they already do though but maybe not to what extent. she's told me that both her primary and her neuro doc have told her to get out, get engaged in life, etc. she's on antidepressants and ritalin. maybe they'll have her get a psych consult....which would be a very good thing i think. thank you again.

[SarahL2491]

Adding on to ess's post, once I posed this question to my GP about my DH and his possible diagnosis of Alzheimer's and she told me to write out what I wanted to tell the doctor, put it in an envelope and put a sticky note on top of it saying "please read this before seeing the patient", and quietly hand it to the receptionist, asking her on the note, to put it on top of the file that was going to the doctor.  She said the doctor would read it before seeing the patient and would not divulge my note to the patient.

Perhaps this is a way you can get this information to the doctor

I too am sorry to hear of this, it appears that she is depressed and still in denial at the same time.  She is lucky to have a friend like you.

[essdipity]

I'm so sorry to read this--it's all so unnecessary. I can only conclude that she's quite depressed.

Since she does go to doctors' appointments, I'm wondering if you or others of her friends can alert doctors as to what's going on. A doctor won't be willing to discuss a patient unless given specific permission, but he or she may just listen to you without responding directly. Someone must help your friend get to her appointments, so possibly that person can at least phone in first with the heads-up.

Depression is very common among MS patients, and can come from a reaction to circumstances, pain, lack of sleep or other secondary factors. It can also be primary, resulting from lesion activity in the mood-regulating centers of the brain. Antidepressants often are helpful.

Your friend needs to eat healthily and to find ways of exercising her body and her mind, which she is not doing now. This is not an easy situation, and I commend you for wanting so much to help. In the end, though, she must recognize her problem for changes to begin.

I hope others here have some useful suggestions. Please keep us posted.

ess