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Secondary progressive MS & Friendship Support

Posted by wellness advocate

Hi everyone out there in cyberspace!

I am a caregiver to a dear friend who has been battling MS for 24 years now. It has progressively moved up his body through the years and now is affecting his torso and ability to use his arms. He has been wheelchair bound for 10 years. Seven years ago, his wife of 21 years walked out on him which led to a deterioration in his health since then.  He now require 24 hour care as he needs help with literally everything.  He jokes that at least his mouth still works. I do my best to identify with him and understand, but there is a disconnect that happens because I don't have MS and I don't know what it is like firsthand. I can only imagine what it would be like. He refers to me and his other caregiver as "normals" who can't relate. I would like to find others who can relate and perhaps you can support one another and keep each other from feeling so alone with the disease. Please post here if you would like to create some bonds with others in your position.

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Hi wellness,

Thanks for opening this discussion.  I am about to marry a man with secondary progressive MS and is similar in his status to your friend.  His wife left him after 24 years of marriage and he has been by himself for five years.  He is beginning to experience the arm and shoulder pain and is awakened during the night with it, but he is primarily overwhelmed with the back and torso pain most times.  He is not in a wheelchair yet and he refuses to use his cane.  At times, I wish he would because I think "normals" are more compassionate to people who have "expained" afflictions rather than just assuming they've left the restaurant having had a little too much to drink.  But he doesn't seem to mind the stares and the whispers as much as I do.  Sometimes, I just want to scream, "He has MS!" 

While I understand, your friend's feelings of isolation with his condition, I hope you are well appreciated for your love and devotion to him even though you are not afflicted.  I sometimes feel shame because I can't feel bobby's pain and his fears and concerns but I often think that I love him so much that I would if I could.  The last thing we, as caregivers especially to people we love, want to see, is our loved one in such pain and agony.  Not only is there the physical assistance that our dear ones need from us, there is the emotional and mental capibility that is required to care for and accept what the people we love are going through.  I have fears too.  I have physical pain too.  I have arthritis and chronic back pain.  Pain is pain in no matter what form it afficts us.  I am afraid that I will not be able to physically care for him or that I will become dependent myself in some way and I worry who will care for me.  I hope readers don't think I am being selfish.  I am so in love with this man and I hope this never happens but I am trying to be realistic.  I know worrying about it won't prevent my own dibilitations if they are to happen and my fears are just "what if's" and the progression of bobby's disease and his debilitation is certain.  But I want to be pro-active and prepared.  We don't have much money.  I work for my health benefits and small income.  He is on SSD and has no supplimental health insurance so his medical costs are very difficult to meet.  Combined, we barely get by as is the scenario for many people like us in this economic climate.  Subsequently, there is no possibility of putting away for any kind of home health assistance or nursing home facility should one, or both of us require it. 

I will be relocating from the east coast to the west and have no friends or family where he is.  bobby and I have a very strong faith in God and we are very much in love with each other.  We both feel that our spiritual relationship is strong enough to  conquer our fears and we will be okay.  We don't need much right now and we are both wanting very much to live in the moment and not take the "healthy" time we have together for granted. 

I am new to the MS world but I want to absorb all that I can to be of greater assitance to my future husband so if anyone has suggestions or other sources that I can tap into, I would love to hear them.  Thanks! 

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Hi Bobbygirl -

I'm so glad you posted. I am a firm believer that people with similar situations need to support one another.  I would love to talk with you more. Is Bobby interested in getting to know someone who has been where he is? If so, we could exchange emails and phone numbers.

Hope all is well. BTW, where on the west coast are you moving to?



Hi Bobbysgirl -

Are you still out there? We never continued with our conversations and about 3 years has passed. Please reply. I didn't want to write a longer email unless I knew I could reach you. 

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