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jaded_crystal
jaded_crystal replied to discussion RE:Mom diagnosed yesterday.
2 days ago
My mom suffers from not only MS, but Mitochondrial Disease and developed optic nuritus. These health problems will take time to effect them, but we'll have them around and be able to comfort each other. Find the good parts, and down drown in misery, that's the last thing our moms want to see
jaded_crystal
jaded_crystal replied to discussion RE:Mom diagnosed yesterday.
2 days ago
Ever since I was young, my mom has been affected with MS. Seeing her suffer, yet persevere every day is difficult. Some day will be gut wrenching, some will be breathtakingly fun with them. I've been told to look a the positive, and it's very difficult to do when all I see is the negatives, but our mothers are still here with us, still supporting us, and we can be there for them. It's not easy, especially alone. Don't get into the habit I'm currently trying to escape of burying​ our feelings about this.
jaded_crystal
jaded_crystal joined the group
2 days ago
jaded_crystal

jaded_crystal

CHERRY HILL, NJ
  • Gender Male
  • Age 18
  • Relationship N/A
  • Connection to MS
lmoody
lmoody joined the group
12 days ago
lmoody

lmoody

Titusville, FL
  • Gender N/A
  • Age N/A
  • Relationship N/A
  • Connection to MS
COUNTRYAPPLE7
COUNTRYAPPLE7 joined the group
17 days ago
COUNTRYAPPLE7

COUNTRYAPPLE7

Garden City, NY
  • Gender N/A
  • Age N/A
  • Relationship N/A
  • Connection to MS I have MS
vgales1284
vgales1284 created discussion Mom diagnosed yesterday.
21 days ago
Hi.  My name is Vicki.  My mom, who is one of my best friends in the world, was diagnosed yesterday with MS.  I really don't know how to feel about this.  I am relieved that it wasn't one of the 10,000 other horrific things I had conjured up in my mind to cause her inability to walk without a cane, her concentration and memory issues, her extreme fatigue, and her falling spells, but I'm also scared to death.  I don't know, yet, what this will mean for her future or mine and how this will affect my family.  I don't know whether I have to worry that I will develop MS.  I don't know if there are treaments that will help her regain her ability to walk and control her fatigue and give her back some quality of life.  The neurologist was not yet able to determine what type of MS she has, as he feels that, despite the severity of her symptoms, she is still in the early phases of the disease.  That terrifies me - as severe as her symptoms are now, she is early in the disease?  Does that mean that this will only get a great deal worse?  I'm terrified that she'll develop lesions elsewhere and will lose her inability to see, speak, swallow, etc.  I'm just...terrified.  I just had to tell someone because I'm having to be strong for her and the rest of my family right now and don't want to burden them with my terror.  I'm staying positive for her, but inside, I feel only anxiety and sadness.  I just needed to reach out to someone that understands what I'm going through.Thank you for listening/reading and I will pray for your families as they deal with this disease too.
vgales1284
vgales1284 joined the group
21 days ago
vgales1284

vgales1284

Weatherford, TX
  • Gender Female
  • Age 32
  • Relationship Married
  • Connection to MS
kwiederhold
kwiederhold joined the group
1 month ago
kwiederhold

kwiederhold

, MI
  • Gender Female
  • Age N/A
  • Relationship N/A
  • Connection to MS
Monica_A
Monica_A joined the group
1 month ago
Monica_A

Monica_A

Parker, CO
  • Gender N/A
  • Age N/A
  • Relationship N/A
  • Connection to MS Friend has MS
Monica_A
Monica_A replied to discussion RE:Medical Insurance and Care
1 month ago
Hi Caligirl 82, Have you called an MS Navigator?  One of our Navigators could be very helpful in navigating the complex world of assistance.  It would be good to make sure all options have been exhausted.  You can reach them M-F 9-7 ET at 1-800-344-4867, press option 1.  I hope that helps!Monica
caligirl82
caligirl82 created discussion Medical Insurance and Care
1 month ago
Has anyone had any issues with receiving care for your parent or loved one? My mother was told that she makes too much money to receive government assistance, but not enough for 24/7 care from a caregiver. How is that? Are there any other resources out there? Very frustrating!
caligirl82
caligirl82 replied to discussion RE:Daughters Frustration...
1 month ago
I completely understand where you are coming from. I'm in the same boat as you are in. I sometimes wish my mother would acknowledge that we are just trying to help. WIth MS, if you do not take care of yourself, you only get worse. She doesnt understand that or is too stubborn to do anything about it. There have been times where I felt like giving up, because I can only give advise to her, its up to her to run with it. Now my mom is in a state where she cannot take care of herself and caretakers are involved. It is getting to the point where she might have to go live in a board and care facility. My brother and I cannot care for her daily needs like an around the clock care provider can. It is frustrating to say the least.
caligirl82
caligirl82 joined the group
1 month ago
caligirl82

caligirl82

Melbourne, FL
  • Gender Female
  • Age 34
  • Relationship Single
  • Connection to MS
dragonflymum
dragonflymum joined the group
1 month ago
dragonflymum

dragonflymum

Clermont, FL
  • Gender Female
  • Age 49
  • Relationship Married
  • Connection to MS I have MS
marykatb
marykatb joined the group
2 months ago
marykatb

marykatb

Columbia, MD
  • Gender Female
  • Age N/A
  • Relationship Married
  • Connection to MS
leslievohs
leslievohs joined the group
3 months ago
leslievohs

leslievohs

Lenexa, KS
  • Gender N/A
  • Age N/A
  • Relationship N/A
  • Connection to MS
cmilen
cmilen joined the group
3 months ago
cmilen

cmilen

Seymour, TN
  • Gender Female
  • Age 34
  • Relationship Married
  • Connection to MS
maria1
maria1 replied to discussion RE:Daughters Frustration...
3 months ago
I have a friend who just turned 90, and it is driving him crazy that his son is telling him what he can do and not do.​Your mother is olld enough to know how to take care of herself and what works for her, so please allow her to make her own mistakes. Losing autononmy is the worst hell for any adult. To put it rudely, mind your own business. Your mother made it this far, she must be doing something right.​We msers have instances where things do not go into our memory, it is like words bypass the memory cells. We say yes to doing something but never know we have made plans. It is more pronounced when we are more fatigues. We try to do what we use to do, so we over work all the nerves and our mind does not forget things, it is that the mind never knew, it is just the mouth speaking.​If i had children, I would want them to live their own lives, to enjoy their lives, and to live their lives to the fullest. They are separate, no longer attached, be strong, be independent, pay attention to your family, enjoy them, love them, and let me live my life.​We each have our own self, to be who we want to be, no matter what. Just because we have ms, gives you no right to interfere with how i live my life. Share with me your concerns, because you would be remiss if you did not, and then you have met your oblgation. My life is up to me.​[because i have ms, it makes me sorta angry about being careful about my life, what could be worse? So when i was 61 i got on a horse, even though everyone was scared (not me), there was a grand time for me, no doctors, no babysitters, nobody trelling me anything, me and the horse, i even did some low level jumping, because i wanted the thrill, and of course there were times when i fell off the horse and that was grand too, because i wanted that experience. Things that make me feel good about myself seem to be all i need to have a good life, living with ms. It is unlike anything i have ever known in my life, and as it gets worse, i want my independence more. Be kind to yourself and recognize that your mom is an adult, responsible for herself, and you are not responsible for her, she IS old enough to make her own mistakes.
jacikhouser
jacikhouser created discussion Daughters Frustration...
3 months ago
My mother has known about her MS for almost 9 years now, she has good days and bad but mostly bad lately. I feel guilty beacuse lately I've been so frustrated with her, lying about MRI results, ignoring symptoms, not taking care of herself like we all think she should. I try my best to help her where I can but I have a two year old daughter and a husband at home who require my love and attention as well. It's straining my marriage and my relationship with her, especially with a new symptom shes developed. She has moments when she blurts out the most rude and hurtful things to me and others around her and then has no recollection of what she has said later. I know she cannot help it but its extremely frustrating along with the other things going on. The guilt is killing me and I just wish someone understood. 
jacikhouser
jacikhouser joined the group
3 months ago
jacikhouser

jacikhouser

,
  • Gender Female
  • Age N/A
  • Relationship Married
  • Connection to MS