Handy hints for living with MSA

Now that that I have been living with this disease for a while, I thought I would draw up a top 10 of handy hints.  I would love to hear about other people’s tips for making life tolerable. So here goes in no particular order:

1.       give yourself twice the amount of time for doing the most basic things such as getting out of bed  - plan ahead including toilet trips because you will be in there twice as long as anybody else

2.       avoid shirt cuff buttons, you will never do them up - it is so frustrating and a biting reminder of MSA, after all you are now living life in the slow lane

3.       have a cooperative and supportive wife, partner or friend - there are sheets to wash,  ironing to do and meals to make, as well as somebody to talk to  and, pay the papers 

4.       think loud when talking because otherwise nobody hears you and they think you are stupid

5.       don’t step backwards because you are more than likely to fall over—you will take ages trying to get back up again, so learn a technique to do this

6.       drink what you fancy in moderation, in my case gin and tonic with lime rather lemon  -you wobble enough already so who cares

7.       eat tasty food in small portions  about four or five times a day -  it is goodbye to beef steaks and anything that needs a lot of chewing —Liz says I am like a pregnant women when it comes to choosing what to eat,  it’s Yorkshire Brack from the village shop that I crave at the moment

8.       Don’t stand up quickly if you have low blood pressure you might see stars and faint which is a bit disconcerting for you and anybody nearby — I am a real liability so  now I keep  my phone with me at all times

9.       Keep working in one form or another for as long as possible, however hard—it stops me thinking about myself and fills the day so I have something to talk about

10.   Exercise  and if you have still got it use it – if you don’t you won’t have it for much longer

P.S.  After Liz read this she wanted to add another hint, keep smiling however hard it is to make the muscles work.