My wife and i are at our wits end, and would just love some advice from you lovely people out there. This is to do with our daughter Sarah, who at the age of 35 has Primary Progressive MS. She has no use of her arms and legs, has a very bad spasm in one arm if you attempt to move it. She is permanately in a wheelchair, has to be fed, washed and dressed by her husband. She now has a catheter fitted, which is causing her problems due to spasms. She cannot make any conversation with anyone, only to reply in one word if she is okay. The problem we have is that Sarah does not show to us how she is feeling, if she is in any pain. We are at our wits end, what the future is for Sarah. Her MS Nurse has been very good to us, but she like us can only wonder where this is going. Sarah has had all the Physio & Speech Therapy anyone could want, but to no avail.When Sarah was first diagnosed at the age of 16, she had a virus which attacked the right side of her brain, causing part of the Myelin to break and the brain attacked, this was diagnosed as Encephamylitis, and today her brain is still a problem today. My wife and i have done everything to give Sarah a lift and to try and make her happy, but its very hard. Thanks for listening, i hope someone out there can help us. Chris Brennan
I am so sorry to hear the story of your daughter’s illness. I like her have PPMS although I am nowhere near affected as your daughter is
I am afraid I cannot give any advice. I just wanted to let you know that I think your daughter is very lucky to have such wonderful parents as you and your wife and her wonderful husband. Some families would have broken a long time ago under such difficulties. I thank you for your caring of your daughter.
Where this leads to,unfortunately no one can tell you. You say your daughter’s brain is affected, do you know if she has an understanding of her situation? Do you have any understanding that she may have given you previously to how she feels and what her wishes would be, should she be unable to speak in the future? If she can utter one word, could you communicate with her by spelling things out? This is how we communicated with my Aunt who had severe Parkinsons. She may not want to tell you if she is in pain, wants to keep that from you. Oh, it is so difficult to know.
I am sure that someone will replyh with better advice than me.
In the meantime, if you need to speak further with me, just to unload, you can send me a private message. I amalways there as a shoulder.
May I wish you and your family luck for the future and a halt to the progression of your daughter’s condition.
Hi Chris, I am very sorry to read about how MS has so badly affected your daughter.
Have you read about LDN… Low dose naltrexone? It is hard to get on prescription as it is not recommended by NICE for MS… but you can get it privately… and I think in your situation I would definitely give it a go.
Lots of people with MS swear by it.
Look at the ‘LDN Research Trust’ website.
My heart goes out to you and your family Chris. Sarah is very lucky to have such a loving and caring family… although ‘lucky’ is not an easy word to use for Sarah.
Please come back to us whenever you have a question or need support.
If you post on Everyday Living about LDN you will find a lot of people on there who use it… and a few PPMSers on here use it as well.
Sorry not to be of much help, my suggestion is that you phone the MS Society Helpline and see if they can help.
Hi I also want to add my best wishes to you and your daughter and her wonderful husband.
you sound like a very close and caring family.
Sarah`s progression in PPMS is sadly, much worse than most.
Just want to send you some hugs.
I’m an ex-carer - sadly my husband passed away in December.
What movement does your daughter have in her arms? My husband’s was very limited in his left - none at all in the right. He communicated by banging his wedding ring on the bed rails (made a clang, which I could hear even when in another room). It only required him to mve his hand slightly - his speach was unintelligable so a monitor was out of the question, and he wasn’t dextrous enough to use a buzzer.
So, attention got! To try and work out what he needed after thathe would motion with his left hand slightly, or nod in the general direction of whatever it was. Mainly to him he needed re-positioning, or some medication, or a drink. Although his speach wasn’t clear (the kids couldn’t understand him at all at the end), I managed to make out ‘yes’ or ‘no’, and make a best guess at other words. To most people it sounded like a noise!
I probably got it wrong a lot of the time - but I tried and perservered!
Is your daughter on anti-depressants? At such a young age, it’s hard to keep spirits up. The anti-depressants just took the edge off things with my husband.
It’s a difficult time for you and your family - PM if you need/want to. Caring in this position is a lonely old game… perhaps a bit of empathy from someone that’s been there would help?
Should have said - my husband was 43 - so our position was very much like yours
Thankyou for all your comments about my daughter Sarah, i am truely grateful for your truethful comments. I did forget that Sarah has Disaxtia(i hope that is the right spelling) in both arms. Also Spasms in her head and legs. She has been waiting for Tests for a Baclofen Pump, which when fitted could solve the spasms. But she also has to wait for the funding for this (£20,000). Plus now she has problems with spasms with her catheter, so she is waiting to have Botox, to see whether this might help. Can i say a special thanks to Anne28 & Snow Leopard for there special comments. i will contact you again. Thanks Chris Brennan