progressive MS & talking of death

[JudyAnn1620]

My daughter is 47. She has advanced progressive MS. She is unable to walk & also is having many new smyptoms. She has alot of pain. Her left side has stroke like effects. Just would like to know what to look for so I can help her go through this. She is also very thin. Maybe some of you all can help me through. Love to all, JudyAnn

[MsWobbles]

Lulu,

And I think YOU are a very wise and wonderful person!!  Thanks for all the helpful, supportive, and informative posting you do on this website!

Hugs!

WAF

[Lulu54]

JudyAnn, Thanks for the laugh - I have a good friend/co-worker that we always joke about putting on our big girl panties and dealing with it!  

We know lots of other resources too - if you need a list just let us know.  There are places to help with equipment, home care, transportation needs, etc. and Leslie should qualify for all of those and more.  

You are right that SS is a very wise woman - she has a lot of experience to share with you if you are open to ideas.  

we're here for you - just let us know how we can assist with our collective wisdom.  We know a lot and we care even more!

And we would love to hear from Leslie too ....

my best, Lulu

[JudyAnn1620]

Thank you for you comment Means alot. My Leslie has had  MS sence 1985. We have come a long way. She has become progressively worse. Did well untill about 3 yrs. ago. She has had to move home. We are going to get a hookup with a pain mangement Dr. She saw a psychiatrist last Monday. Home health came out and took blood & urine. She is very sick today. Les sees a ST. She has a hard time sallowing. She has lost alot of weight. She was YMCA junky! That what she wants everybody to know. Move it! We should get some news back soon from the lab. I hate to have to take her to the ER. But well if needed. You that care, you are a very wise women.  Love, JudyAnn  I've got my big girl panties on.

[ShadowsSister]

hi,I also have what use to be called chronic progressive MS. I got that label a few years after being DX in Jan 29,1986 I have not been able to walk since the late fall of 86.
THERE are a lot of other things I deal with daily, I am telling you these things to help you realize that your Daughter can have a life even if she is in a wheel chair.
Pain can be and MUST BE ADDRESSED ASAP. I have a pain management Doctor, He addresses my pain issues only, I have a team of doctors who deal with the rest of me

Judy, MS isn't a death sentence, it does make life very difficult especially for our families, because you want TO FIX IT, BUT CAN'T. One way you can help your daughter is to encourage her to find NEW WAYS OF doing Old things. An O/T can be a huge help. Encourage her to Not think of herself as Helpless & Hopeless because she ISN'T.
How you talk & treat her can make a difference in how she views herself and her situation.

I am sorry Ran on so long, but your Daughter needs you to take care of yourself, so you can become more of a team working together, it is OK to see each others tears. Some times a good cry is necessary in order to take another step forward.

You hang in there, stay in touch with our group so you & her can be supported while you and your Daughter search for answers together, it is very important for her to become an Active Partner with you.
I'll be keeping both of you in my prayers,,,{{{~!~}}}

[saveone]

Like the others I am sorry you and your daughter are having to experience this.

I wanted to add that if your daughter is not talking of suicide, then maybe her talk of death comes from fear.  Maybe fear that she will die soon.  Either way I am with WAF please seek some counseling.  You and she do not have to try to figure this out on your own and yes, contact the MSAA or any of the other support groups.   I believe they could tell you what is available in your area in terms of support.

There are also places or organization that have grant money to help with the cost of assistive devices.  I don't know what insurance you have but some funding for technology may be available through them.

I also can't tell from your post what your daughter's capabilities are but I believe everyone has strengths that can be built upon.  Is it possible for her to use a scooter or mobilized wheel chair?  Does she still have the ability to speak.  If so there are programs that can type what she speaks.  That way she could get on line and join the forum or stay in touch with family and friends.  

Web cams allow conversation over the Internet with loved ones or friends.  If you don't have a computer which I assume you do as you posted here, a computer can be considered assistive technology.

Has she been evaluated by occupational therapy.  They can help her learn how to use her environment in the most effective and energy saving way.  They can teach alternate means of cooking, dressing, bathing, etc.

I also don't know what state you are in, but here in KY there are programs that provide monies for attendant care or respite care.  Those monies can be used to pay a family member, friend, professional etc to help with her care.  I would be willing to research such programs in your area if you would like.

These are just some of my thoughts.  I would really like for you to tell us more, then maybe we on the forum would be able to offer more specific advice.

The first thing though would be to deal with her depression/anxiety about her situation.  Please talk to your doctor about pain management and counseling.

take care, terry

PS Don't forget to take care of yourself!

[PastorDan]

All of these fine folks have given you great advice; there's little I can add, but if I can help with anything, just let me know.

[Lulu54]

JudyAnn,
I'm unclear whether you are saying that your daughter is suicidal or if she/you wants to have a discussion about MS and death.  WAF is correct that there are lots of support agencies to help you both - we just need to identify the problem a bit more specifically.

my best, Lulu

[MsWobbles]

I am so sorry to hear what you and your daughter are going through.  I am so sorry she has progressive MS.  Even though there are no medications yet to treat progressive MS (other than symptomatic relief), there is a medication currently in trials called "Fingolimod".  It is the only PPMS currently in the FREEDOMS trials.  If you can get her pain under control with adequate pain medication, maybe she can wait to see if that medication gets approved.  It might be  a couple of years, but maybe it could help her!

I also suggest getting some psych support for her.  There are suicide or just general psych hotlines where she could discuss her suicidal feelings with others.  
Here is the number of the National Mental Health talk line:  1-800-273-8255.  Anyone can call that line to talk, to get support.  It offers free 24-hour support!  You may need to use it too, to get suggestions from them for dealing with your suicidal daughter or just to blow off steam.

There may also be some MS progressive support groups in your area where the patients are pretty far advanced as she is.  It would be helpful for her to attend those sessions and discuss these things with others who are going through similar trials.  Because she is thin, at least, you have a better chance of being able to lift her and transport her.  Contact MS Associations, either national or local for more info as to where your nearest MS office is located.

Best of luck to you and your daughter!

WAF

[Wobbly]

Oh my, sorry to hear about your daughter, it must be very difficult.  Is there any support groups in her area?  Nurses that come to her home?

sorry, I'm not much help... hopefully others will come on and have some Ideas.. have you tried the MS Society?

take care and stay in touch
wobbly
dx

[Lulu54]

Hello JudyAnn,
Welcome to our little corner of the world where everyone will understand what you and your daughter are going through.  First let me tell you how sorry I am that she has progressive MS.  

She is very fortunate to have you as her advocate - we all need someone at our side on the good and the bad days.  

I would strongly recommend that you find a pain management doctor to help with the pain.  Palliative care is very important and is not limited just to hospice patients who are in the final stages of living.  If her doctors can't recommend someone, make some phone calls to your local hospice organizations and ask for their assistance.  

This is a loving, supportive community and I hope you will feel comfortable to ask specific questions as you think of them.  We do have people here who live with PPMS and its devastating effects.  

Be sure too to take care of yourself- you will be of no use to your daughter if you become ill or too stressed.  If you want tips on how to do that, I am sure many here will be happy to give you suggestions.

my best to you,
Lulu