My boyfriend has had ms for ten years and has primary progressive, he seems to have gotten much worse recently. He is having siezures frequently where he spaces out and goes limp, also severe tremors mimicking Parkinsons, he has lost alot of weight and becomes confused from time to time. He also has back pain which he never had before. The doctors tell me there is nothing they can do for him, but i am scared for him. Is he nearing the end of his life and should i set up hospice for him? I am only asking because I am scared for him, and you know how when your a caregiver alot of people dismiss you because your not family. Please tell me the truth.
It's fantastic to see that you received some lovely responses. I have a friend, Herrad, in Amsterdam who has experienced a rather quick decline in her MS. Her blog is Access Denied - Living with Multiple Sclerosis. Here is a post which briefly describes what has happened to her physically since diagnosis only 2 years and 4 months ago.
Her husband has started a blog to help express what he is going through as Herrad's caregiver and best friend. It is called Screaming Richie. You may find sentiments expressed which are similar to your own thoughts. If nothing else, you will find that you are not alone.
I wish you and your boyfriend the very best in the coming year.
This is the kind of question which is so very difficult to answer simply because I have no answer. I do not know if what you are describing is the sign of an impending end. I am not a doctor and am powerless to really give you anything but my support.
I am so very sorry that you and your boyfriend are going through this. I cannot imagine how you must feel right now. I do imagine that you want to make things all better for him but you can't. The very best you can do is to be there for him and continue to help him as you have been doing.
As for hospice care, what are the doctor saying? Is your boyfriend able to eat and drink on his own? Are there any signs of functioning that he still has intact? I would definitely seek the advice of the professionals to guide you as to the next step for his care. Your love and care for him definitely shows through so clearly in this letter. I applaud you for hanging in there.
I wish I could hook you up with an anonymous woman who had commented on one of my pieces recently. Her husband has Primary Progressive MS and she was looking for other caregivers who were going through this. I hope that perhaps she comes back and sees your question. Please do go read her poignant comment...just scroll down until you find a comment by anonymous. Here is the link.
I also would like to get you set up with some sort of support system on-line. A site called MS World has an on-line forum set up and a specific section just for people who have Primary Progressive MS and their caregivers and here is that link.
And here is a yahoo email support group specifically for caregivers of those who have MS.
You need some support at this time. This is too rough to handle alone.
Please tell us if there is anything else we can do to help you. I will be thinking about your letter for some time to come I am sure. Thank you so much for reaching out.
I want to thank you both for answering my question and being there for me. Its nice to know someone understands. Warren is a quardrplegic and can not feed himself anymore, most of the time he is mentally stable and still has a great sense of humor. But i asked because this is new territory for us and the doctors just tell me it won't be long, but they told me that 3 years ago and he knows I love him very much so we have beat the odds as they say. But now i feel as if we are fighting a losing battle, and it was nice having someone else to talk too. It really meant alot to me. We will just keep doing what we can, and have done for the last six years, and make adjustments as we go along. Worked so far!
Also, I want you to know you are both in my prayers and my heart and if you need a friend, you can contact me through my email. God be with you both!
Yes this is a difficult question. I am in the same boat, wondering day to day, if their a tomorrow without pain, loss of sensations. My mind has stayed good. Hadd 11 MRI's and last one was I guess 8 years ago, when I had 13 lessions on my brain and one on my brain stem. Their is never any reason to give up hope. Remember when Pandors Box was opened, hope stuck on the rim. My MS has worstened alot in the last 3 weeks, but I keep on going. He has something I no longer have, a person the cares emotional and physically about him. My wife of 16 years bailed out, even though I got her educated and hired her on into my respiratory therapy department. If the doctors says that nothing else can be done for him, take hime to a top ranked medical center. Their is not a toe tag on you in advance. Many of doctors don't take the extra effort to go the distance. Many lacks in compassion and expertise and takes the quick way out. Severe tremors can be controlled with a baclofin pump. The going limp part is strange if he is having sever spaciticy. He has to gain so strength back, this is a must, but to give up hope is even worst. My family consist of 2 poodles. Let him know their is a reason for going on in you. You have to be his strength now. Will power is extremely strong medicine. I know it is very hard on you, but you need to be there for him, or he will give up all hope. Get some world class doctors. In my area Charel Hill, NC and I also have gone to Duke to a Berry J. Hurwitz, MD who does teleconfernencing all over the world. Their are other place also but I don't know where you live.....God Bless...John
My husband has a very aggressive form of multiple sclerosis aswell. A change in the dosage of baclofen could be causing the seizures. My advice would be to consult your neurologist immediately to discuss this, and address your concerns for end of life preparations...ie)Prognosis
It's too bad these things happen, but know that you are not alone. We are not in control of the outcome, only of how we react to it.
Hi....I have Progressive Relapsing MS which was not detected for 20 yrs......no doctor figured it out no matter what I did or said. It was finally found by accient in 2007. I have tried Chemo, and interfearon. Currently, I am on High Dose Steroidsfor 3 days in a row every month and copaxine.
I am trying to accept the fact that the Chemo did nothing for me after a year and now there is no more treatment because it was detected too late.
Some days I am so weak I cannot move....I try to get up from bed and sway into everything on the way to the bathroom. I get short of breath moving and at times the pain is horrendous. I just got pain pills to deal with this but I only take them if its horrendous pain.
What I wanted to say was sometimes when I have trouble breathing and am so weak I cannot lift a finger and am confused, I wonder if its my last day.
I honestly don't know if or when its my last day.
The dread is starting to sink in of my fate.
One day I will not be able to move my arms and legs.
I am Sorry Cindy that your boyfriend is suffering along with you. I do really understand and I know its not easy. All we can do is keep fighting the good fight and hope for a cure to be discovered.
I am very fortunate because I found a doctor in my area that has MS himself....he is on no picnic either and it is comforting when he says "Your talking to someone who understands"
None of my family understands.......when I try to update them...they say "But you look so good"
Trust me when I say I understand and I wish you the best.....try to ignore people who don't get it....it will just frustrate you.
A few weeks ago I decided it was time to tell everyone "Either support me with my illness or get out of my way and bite me"
That seemed to register easier. Trust me, it takes a very strong person to do that.
I don't want pity........I just want understanding and hopefully when day I will at least get that. :)