This is my first post, just looking for some advice.
My wife has recently been diagnosed RRMS and I need some advice to help her in the best way.
She seems to have recently (last 6 weeks) taken a large dip downwards. Her standing and walking has become very unsteady and she is becoming weak.
As my wife is very independent she is finding this difficult emotionally to deal with. Her mood swings are getting worse. She goes from extremes of wanting to hold me to shouting and pushing me away. I am trying to be there for anything she wants but am finding it quite difficult to handle. I know that she is dealing with so much since her diagnosis but I am also struggling to stay solid for her. I have depression and anxiety myself and am teetering on the edge of not coping myself and I want to be there for her.
She is the love of my life and I am struggling to watch her go through this without knowing how to help. I just donāt know what I can do to help her. She is so independent and does not want to accept help but I cannot sit by and see that she needs help but I donāt know what to do.
My wife has her first appointment with the nurse at the ādisease control clinicā tomorrow and we are a bit in a fog as to what we need to ask. When she will start any treatment / what is available.
Her diagnosis was delayed as she had to have an additional MRI under anaesthetic due to her not being able to handle the MRI tube.
Like your wife I have diagnosis of RRMS. I would have been diagnosed several years ago but the MRI scan I was sent for was carried out on a mobile van and I just couldnāt stay in it! The doctor who had requested the scan was very abupt with me because I hadnāt stayed in scanner long enough and did not take any further action. I am glad your wife managed to get scan under anaesthetic.
Two years ago I was sent for MRI by neurologist at another hospital. He did not agree for anaesthetic but did agree to try to get scan for me in open scanner. As it turned out the scanner I was sent to was a new state of the art wide bore scanner. The two women carrying out the scan were patient with me and played by cd I had taken with me.
Your wifes appointment tomorrow will be with a specialist MS nurse. I have not looked back since my first meeting with mine. She has made referrals on my behalf and best of all fully understands MS.
As for struggling to stay solid for her - I assume she has been supporting you with your depression and anxiety - your support for her is no different. I myself have been there for my husband through his kidney failure, dialysis and transplant (new kidney now 14 years old). The focus for so long has been his health issues and the confirmation of my having MS was the beginning of a āturn aroundā - the cared for has become the carer! More to the point we are each others carers. I have to hold my hand up and say I am the one with mood swings - my hubby has a lot to put up with.
I echo the comments above. MS is crappy for everyone involved. Mood swings and rage are totally reasonable, as long as you are aware that it is the disease and not your wife that is responsible.
I used to be incandescent with anger when my poxy body did strange stuff, however my MS nurse pointed how much valuable energy I was wasting on anger.
Please make sure that you take care of yourself so that you can be there to support your wife when needed.
Make sure that you have a good team of friends family and medical professionals to help you both.
The good news is that as your wife has RRMS this means that there are, that are medicines called ādisease modifying drugsā available to help her manage the symptoms.
Although I expect you already know that by now. I hope that this will make your wife feel that she has a bit more control over the disease and will give you both a better quality of life.
Hmm. Biker - I wonder how youāre getting on? My wife copes some days better than others, dependent on so many things - and not just MS of course! Weāre still in the relatively early stages post-disagnosis, I think for us the most constructive thing has been those who know and understand MS inside-out as it were - not just those āME-ersā and carers but the nurses, physios etc. - people for whom MS is not some mysterious no-go area, more āyup, sounds about right - now, what shall we do about itā kind of attitude. Thereās the getting to know about it, then getting to accept it - and I think they are very different things!
Good luck and use the forum - I reckon itās a real source of all things positive for many people, hopefully you included.
I am in shock now at how fast this is progressing with my husband .Nov 2017 walking with aid of a zimmer ,Dec 2017 in hospital diagnosed with ppms ,Feb 2018 in hospital bed bound .At the age of 52 my husband has dissapeared .They have started him on Baclofen but will it work? They think not.Where do we go from here?.
Oh Sue Iām so sorry. I am very new to all this myself but Iām sure others on the forum would be able to advise with the medication question. Maybe start a new thread asking for guidance?
Baclofen is prescribed for spasms and stiffness. So it might help with that, but not all the other symptoms your poor husband is experiencing.
I am so very sorry for the two of you. Such rapid advancement of MS is quite unusual. And to have gone this far downhill in 3 months is shocking and must be agonising for you.
Sue1 , I too am in the same state of shock and Iām the one with ms. Diagnosed rrms two and a half years ago, aged 55. Eighteen months later, having gone from wheeled walker to wheelchair outside diagnosis changed to ppms. Now only able to shuffle with walker and unable to lift my legs into the footwell of the passenger side of the car, unable to write or use a knife with my right hand, Iām fearful of the future and the speed of progression. Three months ago, talking with my neuro, she said such rapid deterioration in either ppms or spms was very unusual, although there are execeptions. I see her again next month and I will be looking for answers (and hope! ) I take Baclofen. I find it has lessened the pain in my knees where they felt ātightā.
Hi poppy .Mark is currently back in hospital with a possible infection somewhere again which has left him bedbound .They cant say if the bedbound is permanant yet .He has got bad cognitive fog which was enhanced by the infection .His consultants are trying to find answers for the rapid progression.He is bladder incontinent since Nov 2017 also
I really hope when the possible infection is cured, some of these things ease a little and getting up is possible again. I canāt imagine what it must be like for both of you.