Rate of progression

[MARYELLOW]

Im concerned about the rapid progression- my husband was walking with a cane and doing all activities of daily living in December and in February is wheelchair bound and can’t do any . Does this fit with MSA?

[Derkie54]

Hello,

Fairly similar, when we moved to a bungalow my wife was doing everything albeit slowly and walking by holding my arm and within months in a wheelchair and doing almost nothing.

What I can say though is since then she has been fairly stable with no further deterioration. Hopefully you will also find that things settle which at least gives you time to adjust to your new normal.

Hard to know what's coming with MSA and when, people have different journeys.

Take care.

Derek

[mandg in reply to Derkie54]

Interesting to read theses comments, as I am getting concerned about Grahams walking. In your cases, is the problem walking because the legs are week with lack of muscle? That seems to be our situation, or is it something else.

[Derkie54 in reply to mandg]

Hello mandg,

Legs are weak, as are the arms now, L struggles to pull herself on to the Sara Stedy and I have to assist.

General strength and co-ordination seems to be very poor, L struggles to hold a knife and fork properly now as well. Writing is a thing of the past, but we manage somehow and so will you, I'm sure.

We just have to do our best to help, we can't do any more.

My one concern was, when I'm no longer able to help what do I do then, but that's a worry for another day.

As the saying goes " Today is the tomorrow you worried about yesterday "

Keep going and smiling when you can

Derek

[TK-67]

sadly yes, my mum was the same. But everyone is very different.

[Hellebelle]

Hi, I can only speak from the experience of helping to care for my father, but he had periods of rapid deterioration followed by a plateau for a while. However, there were times when he deteriorated and it was because he had an infection. Infections made all of his symptoms worse. It is always worth checking for this. My father usually had a chest or urine infection.

I send you my love 💓 as I know how distressing this can be but, as Derek has said, you adjust and learn to live with the new normal.

Helen xx

[Kaye31]

Everything is rapid with this disease. We are similar we hardly had a chance with a cane before it was a walker/wheelchair. He is able to walk around the house with a frame. We are fortunate in that regard but the rapid progression since Xmas was caused by a chest infection. Be vigilant, I write every bit of change down and date it. The consultants need this stuff so get yourself a diary.

Wish you both well xxx

[Helenhooter]

HiyaI too have had an extremely quick deterioration. I was using a rollator in Dec and still able to use my spin bike, do some floor exercises, use the rower in the gym, swim and other stuff. I'm now 100% relying on my wheelchair, am unable to stand up and am finding life very difficult. I have had a urine sample tested and it showed blood and white cells present. That was on Weds and I'm waiting to hear and receive some antibiotics which will hopefully rectify things. I have also got my first movement disorder appointment on Thursday which should be interesting because I can no longer move 😱🤣😱. I have been 'unwell' for nearly 4 years and still no diagnosis.

I'm trying to stay cheerful 😂

Helen

☺️