Husband diagnosed with MS. Heartbreaking to see his decline.

[SouthCoastShell]

My husband has recently been diagnosed with primary progressive MS. It's breaking my heart to see his rapid decline week by week he's getting worse, and today, he couldn't make it downstairs. We are halfway through doing all our own work on a full house renovation and everything has come to a standstill as we don't have the funds to pay for tradesmen.
It's looking likely a wheelchair will be needed soon.
Anyone else been in a similar situation?

No, I'm not but didn't want to leave you on unanswered.

I am so sorry

Absolute bastard of a diagnosis.

I am sorry.
My daughter was diagnosed with relapsing/remitting MS just a couple months ago at 17. It's heartbreaking but we are hopeful with proper medication.
How old is your husband?

I'm so sorry you're going through this. It wasn't MS but my DM had a very rapid decline and the first day that she couldn't do the stairs I remember feeling something break inside me.

I am so sorry to read this, I have no words of wisdom (didn’t want to read and run) but I hope you have people around you for support.

@SouthCoastShell I'm not in the same position, no, but I expect there are others on here who are, I can just send you love, strength & hope. Xx

@mondaytosunday love, strength & hope to you and your DD too. 17 is no age to be diagnosed with anything, it's heartbreaking, but getting a diagnosis at least may get some relief from her symptoms & treatment to stop progression. Best wishes xx

I'm so sorry to hear.do you have options with your house to adapt it, or even sell? Maybe not too early to think about the future to help you both cope

My exh was diagnosed a month before ds was born, he had a relapse a month until he was put on Rebif, which reduced his relapses down to one every 14 months. After we split up, he went on an Alemtuzamab trial, but it didn't suit him & left him in a wheelchair. There are new treatments coming out all the time, there could be something that would help him, ask about trials, they can mean getting treatment quicker.

If you have critical illness cover on your mortgage, you can claim & get it paid off. You need to think about claiming PIP for him & if he gets it & you aren't working, you can claim carers allowance. Getting PIP would mean he could have a blue badge & if he got enhanced mobility, he could have an adapted car if he can drive, which would give him some independence. For an extra £100 deposit, he can also have a lightweight wheelchair which even if he doesn't need it all the time is handy to have. You can contact Adult Social Services who can advise on adapting your home, you may get grants for things like altering your bathroom, a stairlift, downstairs toilet, ramps etc & they can usually get things like grab rails done pretty quickly. Getting a diagnosis like this is a lot to take in, some hospitals run courses where you can go & learn more about how to manage the medication, physiotherapy, about benefits & work, more about the disease, I went on one with exh, it was good that we were able to meet other couples in the same situation. He should be given a named Specialist MS Nurse who will be your first contact at the hospital, they are very good & often know more than the consultants.

Thank you all so much for your replys it means a lot to read your kind words.

My husband is 53 but has been having symptoms building up for the last 3 years. After a year of MRIs and a lumber puncher we got the diagnosis in April.

We have thought about adapting the house but there is so much renovation left to do it is stressful for my husband to not be able to complete it.
We are going to inquire about selling it half finished. It's heartbreaking as we both love it here and it was our joint project we were finishing together.

Because its primary progressive MS, we have been told there is no treatment available only muscle relaxants

My very close friend growing up had some issues our last year of school (age 17/18). The day after we graduated, they told her she had MS.
I went off to university, but when I was home I always visited her. First she walked with a cane, the next time I saw her she was in a wheelchair - all very fast.
By the time we were 21, 22, she could no longer communicate and they put her in a nursing/care home in our small town. She lost her sight and couldn’t sit up and lost all coordination.
She eventually died not too long after.

Fast forward 30 years and a friend and I were reminiscing about our darling girl - friend told me that all these years I had been misinformed: our friend did not have MS as I had been told.
She had muscular dystrophy.

That’s a whole other incredibly vicious disease.

My close friend was diagnosed with PP MS also, four or five years ago. I remember thinking her initial decline was steep and fast, but for the last year or two it has seemed to slow down a bit. It might be that because she is already in a wheelchair the changes are less obvious now.

Many things in your life will be changing, so I recommend you get into an adapted house as soon as possible to make it easier on both of you.

One thing my friend has found is that sleeping can be very uncomfortable now that she can't move around very well, and she wishes she had a larger bedroom in order to accommodate a large electric bed that can tilt/ recline.

And yes, this does seem to be the case right now - muscle relaxants to help with the stiffness. She has also had botox shots in her legs with varying results.

Thank you all for your reply's sorry I haven't been very active on this thread but husband was taken into hospital with chest pains and coughing up blood! X ray shows he has fluid on his lungs. Hes being kept in for various tests 🤞

Progressive is a bastard. I have a loved one with relapsing/remitting which is well controlled with Interferon. I know R&R can become progressive down the line so everyone with a diagnosis is walking a fine line. I agree with others however that new drugs and trials are happening all the time so there is hope out there.

Have you approached the main
MS charity to see if there is help? Even attending local meet ups with carers might help you feel less online. My other thought is there is a nutritional program that has really helped some sufferers. It’s called the Wahls protocol.

@SouthCoastShell sending lots of love your way, MS really sucks. My mum was diagnosed around 7 years ago but has deteriorated quickly recently due to diagnosis of early onset dementia and osteoporosis too now. I know my dad as full time carer would advise to take any help, financial, physical and emotional, that you can, it can be tough but hope you have a good supportive network around you

Yes Do check out Wahls protocol -It is very strict but it did help me recover with another condition. But it is designed for MS - Dr Terry Wahls was bed ridded and recovered fully by following this protocol (+ medicines). She has given Ted talk too about her remarkable journey!
My first step was to Stop gluten, dairy, packaged food

then add 6 cups of vegetables a day !! varied colour vegetables..
Hope it helps.

Hi, have a look at MS Hope and MS Direct websites. My husband has PP MS and this is what we follow. I’m not saying it’s cure and it might not work for you guys but we have found it useful to have something to follow and to be able to make (hopefully) positive changes ourselves.
I’m sorry you are going through this. Xx

Have you heard of Wahls Protocol? She is a Dr. who treated her own MS with a dietary protocol. She is out of a wheelchair herself.

Also look at Ashton Embry and Roger MacDougall; both diet-based methods that might be useful to slow down the progression of the disease.

So sorry to hear this, I know how difficult it is seeing a loved one become ill. My husband has secondary progressive MS - so the decline is slower, but also heartbreaking to watch. He can barely walk now and has cognitive difficulties. Is still managing to work though, his work have been amazing. MS is unpredictable, and you don't know what's going to happen next, it's a rollercoaster.

I wish people would 1) stop comparing progressive MS with relapsing remitting and do some research, really different prognosis and experience of disease. They both suck, but progressive MS is very different and only goes one way.
2) stop recommending diets etc, esp the Wahl's protocol. I know it's meant kindly, but it's only a step from blaming the patients for their decline.

You'll probably be better with a specialist MS group rather than Mumsnet, tbh OP. There's some good FB groups, and the MS society is also useful. Specialist MS physio has been helpful for my husband, if you can access it where you are.

Get some help yourself too - maybe investigate carer's groups in your area, and confide in friends. I don't know what I'd do without my friends, they are fabulous.

Really excellent advice here.