Positive attitude

[Beverley52]

Hi everyone.im Beverley. Don't know if I should really be on here, as I lost my partner recently to MSA. Just wanted to say, that he was always very positive about his illness, and never let it beat him. It was tough at times, but we got thru it together. Don't give up people. You can still enjoy life.

[janehey]

Hi Beverley - of course you should be on this site! You have a wealth of experience of dealing with MSA, and the collateral damage, so to speak.

We used to have a rule that only one of us could be "boggy" at any one time!

[Beverley52 in reply to janehey]

hi Jane, I assume that's your name. Thank you for that. I think I probable spent far more time being Boggy than Billy did, bless him. The biggest problem, I think, is that so many symptoms vary with different people. Luckily, Billy never had any pain, which I believe is a big problem for a lot of people..

[janehey in reply to Beverley52]

Yes, apart from the "coathanger pain" that came with low blood pressure, Chris was lucky not to have muscular pain (or spasms, which can be so difficult socially). Any neuropathic pain was dealt with via Gabapentin.

[Yanno]

Hello Beverley. Talking as a current carer, I think there is no question that you should be on this site. Your courage and positive attitude can be an inspiration to us all. I think that support from someone who have been through the same challenges is so very helpful. Thanks for being here, Ian

[FredaE]

Beverly

I know just how you feel. Just after Victor died I felt I had no place on the MSAT forum as I was (for the first time for years) sleeping peacefully all through the night while everyone else was struggling. Waiting for the nurse to unblock the catheter, changing beds, soothing away nightmares and all those other delightful things. I felt a fraud. Then I had to learn to live without him and I did not think that was the most tactful thing to post about.

Now I have got my life back together and I over am ready to pay back all the help I had from the Trust and its members during those years.

Beverly we have help and advice to offer to people just starting the MSA journey in particular.

The three golden rules

Do it now..don't eversay we'll visit the daughter in France in the autumn.

I can never forget our last visit. We (probably foolishly) did not want to put our son-inlaw to the trouble of driving over from Paris to fetch us so we went by Eurostar as we always had. Eurostar was fine but those double decker metro trains were horrible. Amazingly the french passengers helped us up (or was it down) the stairs and carried our bags for us. The Parisians NEVER EVER help each other like that...it was an all time first and made out last trip a source of laughter not a disaster

Rule two. Find every scrap of joy and laughter you can. Small things are still beautiful even when the big picture seems grim

Never take no for an answer. If you know something is right for you keep on asking, persuading until you get it. Half the time the answer No is because they don't understand why it matters. Everyone knows diabetics may need insulin, people with cancer need chemo but they are not familiar with MSA and do not realise that to have medication on time or keep moving are just as important to someone with MSA. A beaming smile, a helpful explanation and persistence will take you a long way

[Veteran250 in reply to FredaE]

Freda......you have a way with words of encouragement 😀

[Teresa5]

I try x