MSA and earlier lifestyle

[Pec2884]

Could there possibly be a link between MSA and one's earlier competitive athletic lifestyle. I ran marathons as did a Canadian sufferer and another local sufferer taught aerobics and dancing. What are your thoughts nettles1  and cymruralf   or other MSA members? I have just joined MSA Trust and find it very informative.

[Coxy123]

I hope not. I am waiting for the results of my last MRI to find out if my ataxia is MSA, I have most of the symptoms. I too was active in my previous life; I ran for my local running club, was a keen ice climber and mountaineer - all gone now. I foolishly thought I could still ride a bike a few weeks ago. Hah! I still try to keep as active as possible within my limitations though

[Pec2884 in reply to Coxy123]

Hi Coxy123. What a terrible blow it is. I thought I would gently cycle into the sunset at 90.  Now my years are numbered as are my swimming ect. Still struggling with accepting it.

[Jenny789]

I have Cerebellar Ataxia . I am 68 now but I have always been very active physically. I did PE at college, was in the netball team at school, went to the gym twice weekly until I stopped driving and did yoga too. Is there a link?!

[nettles1]

I used to cycle and walk everywhere, both now stopped, as I have no balance. I am 57, with parents a fit and active 80. The injustice is I am too young and now use an electric scooter.

[cymruralf]

Hi all

I have always been very active, Rugby, swimming, running, squash, Golf etc. Even cycling. I always had something to do. I started to notice my symptoms sometime ago after a prostate problem. It took the specialists a long time until diagnosing Progressive Cerebellar Ataxia. At least we had a name for the problem but the symptoms seemed to deteriorate fairly quickly. Was referred to the Ataxia clinic in London Dr Giunti and she diagnosed MSA. I am now awaiting results of DATSCAN. 

Try to stay active within your limitations, speak to your GP as soon as possible ( I took mine any correspondence from the MSA site. Your GP is probably not even aware of MSA. Ensure your GP has you flagged up on their system. Stay away from people with colds. Speak to the MSA specialist nurse. You will need the help of a multi disciplinary team as well as any help from friends and family.

Now confined to getting my stamp collection in order.

Colin

[Iain_100]

Hi Pec2884 (and all),

I'm not so sure this is a trend (but it might be). I just have the feeling that the loss of abilities might be more keenly recognized by those who had a previously athletic lifestyle.

I never competed in anything, but I always ran, swam, or cycled. Every day. This was out of necessity to keep my under-developed lungs working hard (I suffered from childhood asthma).

Coincidentally, it was falling off of my bike a few years ago that first alerted me to a worsening "simple balance problem" (as my ataxia was first suspected to be). Fortunately, I wasn't moving at the time (simply trying to dismount - my head knew where my legs should go - but my legs had other ideas - splat!).

[february]

I was very athletic/active. I was a huge down-hill skier, until I started falling unexpectively on the hill, something I had rarely done. This was the start of my ataxia (20 years ago now) and it has progressed since then. I use a cane most of the time and a rollator for pleasure walking. ;o)