Calling all caregivers and family!!!!!!!!!!!

For questions on how to support loved ones with MS.

Calling all caregivers and family!!!!!!!!!!!

Postby soapdiva884 » Wed Jan 26, 2011 1:00 pm

Where are all of the caregivers and family of MS patients????

I am the girlfriend of 6 years to a wonderful, kind, gentle, giving man who has MS. He was diagnosed in 2006. He has RRMS, although it seems to be more than that lately! He walks with a cane full time, has huge foot drop issues and major cognitive issues.
My Grandmother also had MS all of her adult life. I knew what was wrong with my bf before he did! I prayed that I was wrong though. (If only I could hug the MS out of him) :cry:
I would love to connect with other caregivers and family who need to chat, yell, cry or laugh. WE need to support eachother as much as the MS community needs to support eachother.
This thread seems so lacking in topics and replies. Let's change that! Come on in and start posting, let's help eachother. I know I could sure use someone to talk to!
Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!
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Postby Theotherhalf » Fri Feb 18, 2011 1:06 pm

I too am a caregiver for my wife who was diagnosed in 2002 with one major relapse in 2007 after our second child. She went from almost normal to needing help of a cane and cognitive disability overnight. Unfortunately, my wife was a very happy caring person but her inability to accept her condition has turned her into a very angry woman.

Liberation surgery was Dec 19, 2010 in Costa Mesa, California and there have been no significant changes. Better circulation so she is warmer, less tremors, that's about it. Hoping for more.

I am a private person so finding somewhere to vent would be a great relief.
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Postby soapdiva884 » Sat Feb 19, 2011 9:51 am

Hi theotherhalf, I too am the other half! My bf is not so much angry as he is so frustrated. He had the CCSVI proc in Nov. and he is now worse than before the proc. We are discussing having the proc. again. We shall see. I am so glad you are here.
Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!
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Another Caregiver here

Postby Pinkiej » Sat Mar 12, 2011 11:38 pm

Hi everyone,

I am the wife of my dear hubby - we'll be married for 29 years this May - I married him knowing that "something was wrong". He was diagnosed after we'd been married for 10 years, but had symptoms (balance problems, optic neuritis, fatigue) all along.

The first doctor told him he didn't have MS because he was male and the wrong race. Well we all know how that story ended. He started out with rrms and now has spms. He is progressing pretty slowly, though - his neuro is always telling him how good he looks.

I think the biggest thing about this disease is that we both miss our independence. Not that that was such a big thing, but he misses being able to go and get things for himself - hates having to ask for help all the time. And I miss being able to go to the store and without worrying if he's okay at home until I get back.

We both have learned to cope with MS in our own way. In some ways though, each day is just as unpredictable as the ones that came before it.

Take care
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Re: Calling all caregivers and family!!!!!!!!!!!

Postby MrsK » Sun Sep 18, 2011 12:09 am

Hi, I'm caring for my husband, who probably doesn't have MS but has something similar. We are a retired couple and my husband's illness has been relatively sudden and progressive so doctors have thought he might have Primary Progressive MS, though it's unlikely. Whatever, he is using a walker around the house and is very slow. We have installed a stair lift so he can get upstairs and numerous grab rails as well as a bed post so he can get in and out of bed. When we go out we take the wheelchair.
In December last year he was well and walking unaided and it has progressed to this - the progression was initially rapid but seems to have plateaued recently.
Because the illness is undiagnosed we cannot predict the future.
I guess as a carer my main problem is sleeping. I worry incessantly. He also has trouble sleeping and has to get up a number of times during the night for the bathroom (which luckily he can still manage by himself). I usually have to help him get back into bed as he has trouble lifting his legs and rolling over. He also gets a violent leg trembling (I think they call it cronus) and spasms which often happen while he is asleep. Do people with MS get this too? It wakes us both up.
Generally I keep myself pretty busy with housework and looking after his needs and I don't mind at all. I like being busy - it stops me thinking too much and keeps me fit! I suspect my husband is suffering from some degree of depression and it's difficult sometimes to put on a happy face.
Any little tips and tricks that could make life better would be much appreciated.
(By the way, we live in Sydney Australia.)
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Re: Calling all caregivers and family!!!!!!!!!!!

Postby jason74 » Mon Feb 04, 2013 9:14 pm

Hi, thought I'd introduce myself. My name's Renee 35 yrs age and I'm the wife and carer for Jase. We share the same email, hence the user name. We have a 16 year old son, who finds Jases MS difficult. Jase was diagnosed RRMS in 2007,32 yrs age. He's got all symptoms plus some. Lately we've thought he's got to be in the next stage. Haven't seen the neuro, as he doesn't want to. Jases currently on the Wheldon ABX Protocol. Has been for nearly 2.5 mths. Still early stages. Sounds more promising than the conventional MS drugs. Had been on Betaferon for 4yrs, then Copaxone. Hasn't injected since 23 January. Found balance was better and clearer in the head.
I've been wanting to talk with other carers, especially ones whose partners are on the ABX treatment as Jase. I'd just be happy to talk to other carers in general, really. At times I feel like I'm losing it.
Anyone else out there like this?
Cheers Renee
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Re: Calling all caregivers and family!!!!!!!!!!!

Postby Froggie » Fri Feb 08, 2013 10:09 pm

As a patient, I want to say thank you to all of the caregivers and family! I was diagnosed four years ago with RRMS and I know and appreciate all that you do for us. My husband has been my biggest support and a real trooper with the ups and downs that occur with this lovely disease. Two things. First, read everything you can your hands on about MS. Familiarizing yourselves with things like brain anatomy and treatment options can go a long way to help us out. Secondly, it's okay to seek outside help. People like occupational therapists and other professionals can come up with ideas to make your lives easier.

My husband definitely gets frustrated and I'm sure would benefit from talking with others in the same position. I'll send him this way.

Again, many thanks! Knowing that you guys are so supportive goes a long way to helping us cope.
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Re: Calling all caregivers and family!!!!!!!!!!!

Postby Moom9335 » Sat Feb 09, 2013 6:55 pm

the hardest part for me of being the caretaker is watching my loved one suffer and I cannot do a thing to change or fix it.
He is my son, and is so thankful for all that my husband and I do. But, to see the changes in his body, the decline in his abilities and all the losses
he has suffered is pure torture.

It is so hard to be elderly and healthy, while our son is in bed or a power chair, totally limited by his spasticity, paralysis, medicated but with no good results.
I can never accept what has happened to him nor can I forgive the spouse who divorced him after 20 years of marriage. Too many losses to mourn. MS is truly cruel.
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Re: Calling all caregivers and family!!!!!!!!!!!

Postby jason74 » Wed Mar 06, 2013 1:42 am

Over time Jases emotions have become erratic. It's affecting our son and his relationship with his father. I'm unsure as what to do. I'm trying to hold it together for the sake of them both. Jase seems to think I'm always taking our sons side when things don't go well, but I don't think I am? We don't get any help, as I'm managing and Jase is still mobile, uses a walker when legs puff out mid-morning. He's on Wheldons CAP Protocol. It's been just over 3 mths now. We've ordered LDN, and am hoping that he will have more strength in his legs, etc, which would make him so much happier. I love him dearly and it's breaking my heart to see him treat us like he does. He has apologized afterwards, but there seems to always be a next time. He seems to expect me to up and leave, which I insist is NEVER going to happen. We've been together 19 yrs and recently married last October, as if I'm going to leave!
I couldn't imagine my life without him. My heart goes out MSers whose partners leave them. To me they really aren't worth the pain they cause.

Kind Regards
Renee
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Re: Calling all caregivers and family!!!!!!!!!!!

Postby Moom9335 » Mon Mar 18, 2013 2:08 pm

Renee,
MS affects the emotions both chemically and situationally. My son often talked of leaving and moving into a small home away from his family because he didn't want to see them suffer. He couldn't express his fear and hurt, so he just took it all on the chin. He didn't want to leave, but always worried about his family first and didn't admit it. Your husband is probably experiencing so many changes and emotions that even he cannot understand what is happening.
My advice is to get a counselor for all of you. It will at least help to have a neutral party mediate what is happening in your lives. You are all in the eye of the storm and it is impossible to not be emotional or get hurt no matter how in control you think you are.

MS does awful things to families, and especially to the person who has it. They live in fear, never knowing what is going to change in their bodies in a momemt's notice.
Without neutral help, you will begin to resent him and vice versa. And, who knows what your son is feeling.

By the way, my son died on March 3. Get support soon. My heart goes out to all of you.
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Re: Calling all caregivers and family!!!!!!!!!!!

Postby DougL » Wed Mar 20, 2013 6:11 am

Moom9335 wrote:By the way, my son died on March 3. Get support soon. My heart goes out to all of you.
may he RIP
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Re: Calling all caregivers and family!!!!!!!!!!!

Postby jason74 » Mon Mar 25, 2013 1:35 am

I am very sorry to hear about your son. May he rest in peace.
Thankyou for your advice. My husband won't see a counselor, nor my son, but if I start, maybe they will also.
If you feel like talking, I'm willing to listen.
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Re: Calling all caregivers and family!!!!!!!!!!!teen with ms

Postby Mamirocks » Tue May 07, 2013 11:55 am

Hello,
I'm caring for my 17 year who has been recently diagnosed. I have two small children ages 10 and 8 who are full of life learning, playing and running. My oldest at times hates them yells at them. Then later hugs them and kisses them. I'm trying to be a mother for all three and a wife. It's tiring.
My oldest is on Homebound, lost his friends, friends try to reach him but refuses to see them.
He's strong but makes depressing comments. I feel alone and I have to be strong mp for my family but I feel lost.. moom9335 sorry for your lost.
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Re: Calling all caregivers and family!!!!!!!!!!!

Postby hollymm86 » Mon May 13, 2013 6:54 am

I am 27, and was thought to have had ms since my early teen years... i can empathize with your child who was newly diagnosed, as personality is deeply affected... I mean sometimes those harsh reactions come out of no where, or inside your childs mind they are not harsh-but come out that way. Also its a huge big deal to be diagnosed with ms (especially so young, as if puberty isn't hard enough!!)its so unpredictable and scary... I know i tried to control everything else i possibly could. If he ever needs to talk or some advice feel free to shoot me an email hmmorrison86@gmail.com
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Re: Calling all caregivers and family!!!!!!!!!!!

Postby hermano » Tue Sep 17, 2013 12:49 pm

I have a brother and a sister in law with MS.

As an outsider one of the most helpful things for me to learn was patience and not to be judgmental. Anyone without the disease cant understand what these MS patients are going through.

The anger / frustrations / outburst are not a product of the person but rather the disease and you cant simply expect your loved one to act like a healthy person. Although I did not understand this at first I do now - the goal for any caregiver is to reduce stress, be supportive and act like the bigger person even if its hard.

I hope someone who is struggling to understand how to help reads this and realizes the normal rules don't apply. Make yourself strong and don't load up on the person in pain who would give anything not to be in that situation.

Hope this helps.
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