Wife's RARE MS beating me down

[mirey45]

HubbyMS, I found this today on a site called Alzheimer's Outreach, thought I would share with all. More info then NMSS gives or at least I feel.

***Copy and pasted material prohibited per MSWorld Guidelines. Thanks for your understanding***

Good luck to all dealing with this form, personally I feel we and our loved ones are getting the real "short end of the stick" from NMSS. Some how we have to stay together and find answers ourselves. That's the only help I can see, then we have to get SOMEONE to listen and help.

[mirey45]

What I would really like to see is more support from the NMSS re both cognitive issues, dementia, and mental illness ranging from depression to bipolar that is associated with MS. Bipolar occurs somewhere around twice as often in MS patients as in the general population. However, the treatments for Bipolar have not been tested for MS patients. For instance, Lamictal was tried recently in MS patients as a possible treatment (although I don't think they were trying to use it for bipolar MS patients) and it was found that it actually caused more lesions. Fortunately, when the patients got off the drug the lesions subsided. Dementia (lack of executive functioning) is another frustrating aspect of the disease.

I think the MS Society could do a lot more in terms of using skilled facilitators - psychologists or other professionals who really know how to interact with a group (family/friends) and how to arrange things effectively so people come away feeling like they've gained something. I don't care for the support groups for care givers - they've largely disappeared in this community anyway. I want someone who is truly a professional and enthusiastic and shows leadership skills and I want it in live (in person) workshops say once every month or two.

HubbyMS I truly agree with you, I feel NMSS wants to keep this "under the rug" as much as they can. By not admitting that this can cause serious damage to the mind then they keep it a nice "clean" disorder. The new Dr. my wife is seeing is very much into the NMSS "program". She will not even listen to my daughter or me about my wife's mental problems, and is pushing real hard her getting on a drug for the physical problems even though they are minor compared to others.

As far as NMSS "helping" caregivers, that's a joke. Since the early 90's I have been told about a peer program by phone to help each other, and give caregivers support. When I talked to them just a few months ago, I was told " we are almost ready to get it going" , after at least 15 years I would hope it will be ready in my lifetime. That's why I feel this forum has been a godsend for me.

[HubbyMS]

Need NMSS Support for Cognitive, Bipolar, Dementia

What I would really like to see is more support from the NMSS re both cognitive issues, dementia, and mental illness ranging from depression to bipolar that is associated with MS. Bipolar occurs somewhere around twice as often in MS patients as in the general population. However, the treatments for Bipolar have not been tested for MS patients. For instance, Lamictal was tried recently in MS patients as a possible treatment (although I don't think they were trying to use it for bipolar MS patients) and it was found that it actually caused more lesions. Fortunately, when the patients got off the drug the lesions subsided. Dementia (lack of executive functioning) is another frustrating aspect of the disease.

I think the MS Society could do a lot more in terms of using skilled facilitators - psychologists or other professionals who really know how to interact with a group (family/friends) and how to arrange things effectively so people come away feeling like they've gained something. I don't care for the support groups for care givers - they've largely disappeared in this community anyway. I want someone who is truly a professional and enthusiastic and shows leadership skills and I want it in live (in person) workshops say once every month or two.

[mirey45]

mirely,
I'm in the same boat.. no paddle .. no nothing...
The physical loss was hard enough, but the cogitative loss has been devastating! My Husband was a furniture designer, and he can no longer use a screwdriver... breaks my heart. He is a smart man and he is having such difficultly with word retrieval...breaks my heart... and my 2 young children are so confused...

Scribble for the longest time I thought that I was the only one having to deal with MS in this form. Dr., family, friends even NMMS told me I was "crazy" MS does not act this way, RIGHT!!! Since being on here for the last 10 months I'm finding there are a lot of others in as you say the same boat, although sometimes It's more like a leaky raft.

They would call this "gut check" time in other circles. Somehow all of us in this position have to dig down deep inside of ourselves and find that inner strength to face this ba***rd MS and don't let it win. I have been fighting it head on for my wife for 33 years and trust me some days when I go to bed so down from it, the next morning I get up and look for new ways to get the upper hand on it again.

Your 2 children may be confused right now, but if you help them understand what there father has, trust me they will grow to be wonderful, caring, compassionate adults that will never fear people with "problems". Children do adapt.

I always close a post with a quote, I leave you my favorite from Coach Jimmy V when he was dealing with brain cancer. "Don't give up, don't ever give up" . Together there are strength in numbers, with all of us supporting each other, we can and we WILL beat this thing that our loved ones have, they have MS, MS don't have them.

[sassyc]

You are down, but...

People are here for you. You have the compassion of an exceptional caregiver. You see MS, fight it and right now you are searching for the positive. Sometimes you need to step back and get a fresh view. This is very hard to do in your situation. Call on anybody around...churchmember, someone that you can talk to who will not judge..just listen and offer advice. You are doing the right thing...you do need to get help for you...someone in your community is the one who has it...please keep searching. Your wife's MS is hers and you are sharing her burden...God bless you. Sometimes you need to "take care of you". You'll both benifit from it.

[scribble]

mirely,
I'm in the same boat.. no paddle .. no nothing...
The physical loss was hard enough, but the cogitative loss has been devastating! My Husband was a furniture designer, and he can no longer use a screwdriver... breaks my heart. He is a smart man and he is having such difficultly with word retrieval...breaks my heart... and my 2 young children are so confused...

[mirey45]

Have an appointment on Monday 10/05 with wife's neuro, going to try AGAIN to get her cooperation with giving my lovely wife LDN to see if it will help some in this "war" against her loss of mental functions.

Nerve cells are so adaptable, they say that if you cot or damage a nerve cell it stops working, but it will ALWAYS find a way to reroute it self, that's what I hope the LDN will help her mind do.

If I can't get some "help" from her Dr. then I am really serious about taking her to a Dr. in the Chicago suburbs that I have found that works with the LDN treatment.

I guess all I want is someone to give us some "hope". If the LDN works GREAT, if not then we are no better off then we are now, but at least it's a chance that's all we want.

Hang in there one and all, keep fighting remember "It's not about how hard you can hit, It's about how hard you can get hit and keep going"

Wise words from the "great" sage of wisdom, Rocky Balboa. Peace and love to you all

[HubbyMS]

Yes, I can well imagine that there's some question as to whether it's worth it. My situation is generally not quite that bad (although it escalates more often than I would like) and I feel frustrated over the lack of very clearly defined strategies for dealing with this. In fact, I'm becoming more vocal about it.

Truly, you need someone to work with your wife about her behavior and who will get her on medication that helps to control her attitude and lack of self control. That's probably going to be in the form of more than one "therapist." I know it's not popular to complain about the harm done by someone with a disease but there is a bit more awareness of how devastating it is for the caregiver. You need someone in your corner, too, and more than just a chance to vent (which is good); you need clearly defined strategies with lots of follow-up for yourself.

You might try asking the MS Society for names of therapists who specialize in MS or at least neurological diseases in your geographic area. Beware, though, that sometimes they are looking out more for the MS patient than the caregiver. You might also consider briefly "interviewing" prospective therapists on the phone to get a feel for whether they might have anything to offer you.

Finally, and I don't really necessarily recommend this, but you might consider a trial period of separation. Try to tell your wife that you feel this is necessary because the relationship has become harmful although admittedly I doubt that she will listen. It might get her attention if you do lead separate lives for say a couple weeks or so. I don't mean leaving her in the lurch; arrange for someone(s) to make sure she has necessities. This is a very emotionally impactful action so think it through.

There are a lot of complicated aspects to relationships so there isn't any one good answer or approach. It needs to be tailored to your situation and your wife. But, it isn't good for either of you to live in total misery either. Until an intervention takes place, and it might have to be rather dramatic, I doubt that anything will change. That tends to put you in the driver's seat as the one to initiate change.

Best to you.

[mirey45]

After going through ANOTHER day of this, I really wonder why I put myself through all of this he** and heartbreak.

I mean no matter what I do or say I'm always the one that's wrong, no matter what reason

I just don't know anymore.

[HubbyMS]

Cognitive or Dementia or Mood Revelations

While searching the internet I did come across some sites (and I know there are a lot more) that talk about cognitive problems and some proposed solutions (well, more like aids). Just thought I'd pass it on for some ray of light.

Swallowing, Speech, and Cognitive Problems in MS
http://www.mscare.org/cmsc/images/pdf/2006CMSC_Fundamentals_Schaude.pdf

The clinical neuropsychiatry of multiple sclerosis - a book

(there are some sample pages that that talk about forms of mental illness & MS) By Anthony Feinstein
http://books.google.com/books?id=e2KBALlZ-tsC&pg=PA66&lpg=PA66&dq=multiple+sclerosis+bipolar &source=web&ots=lmcCFfKN-3&sig=QD9CzudkdTMQ6iRrKIEHyJKLFI8&hl=en&sa=X&oi=bo ok_result&resnum=1&ct=result#v=onepage&q=multiple% 20sclerosis%20bipolar&f=false

Multiple sclerosis and bipolar disorder: a case report with autopsy findings

http://neuro.psychiatryonline.org/cgi/content/abstract/8/2/206

http://neurotalk.psychcentral.com/thread77565.html

http://www.mscare.org/cmsc/index.php...547&Itemid=541

Contribution of cognitive difficulties to disability in persons with multiple sclerosis
http://apha.confex.com/apha/137am/we...per196173.html

http://www.researchgrantdatabase.com...rsons-with-MS/

http://multiplesclerosis.blogharbor....2/3476318.html

[quote=mirey45;1171827]Thank you so much HubbyMS, the way you put it MS dementia is so perfect. I have seen this coming on for a long time in my wife and until now by finding others going through this same battle could get NO ONE to believe me.

I need to understand the points I asked you about but in a way I'm thinking to myself "Great now what do I have to look forward to." Sometimes I feel that this is a "tunnel" I'm NEVER going to see the end of.

Thank you for your help HubbyMS, keep strong and hopefully if we somehow all stick together we can get through our own little personal he**[/quote]

[mirey45]

Thank you so much HubbyMS, the way you put it MS dementia is so perfect. I have seen this coming on for a long time in my wife and until now by finding others going through this same battle could get NO ONE to believe me.

I need to understand the points I asked you about but in a way I'm thinking to myself "Great now what do I have to look forward to." Sometimes I feel that this is a "tunnel" I'm NEVER going to see the end of.

Thank you for your help HubbyMS, keep strong and hopefully if we somehow all stick together we can get through our own little personal he**

[HubbyMS]

Mirey,

I subscribe to an email listing (free) of the latest medical news called "Medical News Today Newsletter." I'm thinking it was 1-1/2 (?) years ago that I saw the article/study about caregivers and their greatly increased rate of disease and even early death. Since I didn't add it to Favorite Places I cannot find it now. If you wish to find statistics on this topic they are certainly out there although most tend to be concerned with caregivng of and by older people.

Some of us here in this thread are dealing with MS spouses who actually have a form of MS dementia - sometimes mild - not old age or alzheimers - but have reduced executive functioning (you can google that, too). Temper tantrums, mood swings, anger, obsessions, and other upsetting behavior often go with it and mood disorders associated w/MS can cause similar symptoms. We have lost our marriage partners - they are not the same people - and our well being is being greatly compromised. We wish to do what we can for our spouses/partners but must come to grips with our own needs.

Meantime, here are a few of the articles that I collected on well-being issues of caregivers.
Caregiver burden in multiple sclerosis: the impact of neuropsychiatric symptoms Published Online First: 19 January 2007. doi:10.1136/jnnp.2006.104216
Journal of Neurology, Neurosurgery, and Psychiatry 2007;78:1097-1102 Copyright © 2007 by the BMJ Publishing Group Ltd.



http://jnnp.bmj.com/cgi/content/abstract/78/10/1097

Alarming Statisics on Family Caregivers

http://www.examiner.com/x-4682-Caregiver-Examiner~y2009m5d16-Alarming-statistics-on-family-caregivers

http://codi.buffalo.edu/graph_based/...nf/.stress.htm

http://www.psychologytoday.com/blog/...ich-generation

http://www.rimed.org/medhealthri/200...009-03-106.pdf

http://www.thefamilycaregiver.org/wh...tatstics.cfm#3

http://www.ynhh.com/healthlink/menta...alth_3_04.html

http://www.blisstree.com/articles/ta...aregivers-117/

We as spouses (care partners) have a RIGHT to a quality life (our death rate is earlier & serious illness more common than the normal population - try to get the NMSS to listen to that).

HubbyMS I have to ask where you saw this or found this information. I have never seen this mentioned anywhere before and I would like to have this information please.

[mirey45]

We as spouses (care partners) have a RIGHT to a quality life (our death rate is earlier & serious illness more common than the normal population - try to get the NMSS to listen to that).

HubbyMS I have to ask where you saw this or found this information. I have never seen this mentioned anywhere before and I would like to have this information please.

[mirey45]

One thing I must say about children, my son and daughter have lived with this from day one of their lives. Because of that they are very comfortable with disabled people of all walks of life.

At college my son was hired to be a helper for a home of developmentally disabled men. One of the questions when interviewed was how "comfortable" did he think he would be working there. His response was that he had 2 disabled parents one with MS his whole life that being around this was a way of life for him. They were sorry to see him leave when he graduated he worked out so well. He still stops by when he's in that town to see the men and visit with them.

At least they as adults understand what this can do to people and see that sometimes they need some help, not like a lot of people do.

[tommylee]

Just wanted to briefly address this most difficult and painful issue. I don't have the answer, of course, just thoughts. Frankly, I don't think we can allow one person to take the whole ship down even if it's not their fault.

The kids really need at least one parent who is able to provide the emotional and other types of support kids should have. If that means giving less to the MS spouse then so be it. Sometimes things just have to be divided up and one person can not get the lion's share. We as spouses (care partners) have a RIGHT to a quality life (our death rate is earlier & serious illness more common than the normal population - try to get the NMSS to listen to that). Children are defenseless and MUST get some counseling and other therapies to help them through this difficult time.

Finally, as I said in the other posting, it could be that with the APPROPRIATE therapy(ies) that your husband might do a little better.

Most of all you need to look out for yourself and the little ones.

Brilliant! Can't forget about #1. Who else can hold things together?
If you burn yourself up.... then who cares for the family?
Making a weekly plan for the family and assigning task's may make things more managable and lessen your feelings of frusteration.

Mental faults are the most difficut to manage with out going nuts yourself?