Newly diagnosed.

[Seasider12]

Like a lot of people, my wife was diagnosed with PD 18 months ago but didn't respond to medication and her mobility declined quickly so she's just about walking with a frame and support from me.We saw her consultant on Friday and he confirmed our worst fears that she has MSA.

We're still coming to terms with it but we would like to ask for any practical advice from people who are further along with this dreadful illness.

We know everyone progresses differently but general advice would be very much appreciated.

Thanks for now.

[Milomonster]

so sorry to hear this. We had a similar journey, my husband was diagnosed last April. My advice would be join the MSA Trust, who have been amazing. They have lots of information and support. They will send you a pack out. Also you can arrange for them to speak to your GP to help educate them as often they have never had a case as it's so rare. Also our OT has been brilliant. She has even booked herself on the MSA training that is being offered to health professionals in March. Planning now before crisis' happens helps us feel like we have some control over this nasty disease. Also physio has helped my husband a lot. I really notice the difference if he hasn't been. All the very best

[lotois in reply to Milomonster]

I wish I could send a more positive message but you have my sympathy for the journey ahead. My wife is seven years into the illness and is now unable to walk, talk intelligibly, swallow without danger of choking or grip anything. She also remains acutely aware of every step of her own deterioration.

You will both need all the help you can get to manage your wife’s condition but also to preserve your own health. Enlist the aid of your family if that is possible but also identify and use a reputable local care company to help with the daily tasks, initially of getting her up and ready for the day, then putting her to bed at night as the time may come when she is unable to mobilise and it will eventually be beyond you alone to do it. You may need a profile bed installing on the ground floor of your home and will certainly need a hoist for all transfers.

Lean heavily on the local services available to you, including the neurology dept of your local hospital, the Parkinson nurse for your area, Social Services, Occupational Therapy, the local Speech and Language Team (SALT), physio therapy and wheelchair service for all of this assistance

Very important, have her voice banked by SALT (with the assistance of the MSA Trust) as soon as possible before she starts to lose it as in later stages there is nothing more trying and debilitating for all concerned than the constant difficulty in communicating.

We managed the constant danger of choking by having a PEG fitted so that now all meds and some food go direct into the stomach (administered by carers). If you eventually require a WAV (wheelchair vehicle) make sure you get one with a winch fitted and use it (self preservation).

And I know you’re already aware because you contribute to this website but v important you also look after your own wellbeing by getting relief outside of the atmosphere at regular intervals.

Best Wishes for the future.

[Anovis in reply to lotois]

The practical advice above is excellent but I would like to add that it is possible to have quality time together - no one knows how long, but it is important to get the planning underway early so you can focus on living life and doing things that bring you joy. Communication is so important. In our situation, we hired an end of life consultant who met with us a few times to help guide the discussion of how my husband wanted to spend his remaining time. We ironed out a lot of issues with her help which made our planning easier. Not everyone needs a third party, but in our case my husband was in partial denial and found it difficult to discuss these issues.

I'm sorry that you and your wife are facing this challenge. I'm glad that you found this forum - it was vital to me.

[Derkie54]

Hello,

Sorry to read this, we're in a similar position but further along this MSA journey.

Like you, my wife was put on PD meds and it made no difference. The OT has been very supportive and L has deteriorated over time to a point now where she can't do anything herself. The OT organised a profile bed and airflow mattress, she lives in the lounge now and we use a hoist to transfer from bed to wheelchair so we can go out. They supplied a ramp as well to make things easier.

As for advice, do what you can now because things can change and you'll have to get used to new normals from time to time. As they say " you can't add years to your life but you can add life to your years ". We try and go out most days if we're able, even if it's just a walk, it keeps us sane.

I've found this forum very supportive, if you have any specific questions then just ask and also use the excellent MSA trust.

Take care

Derek