Msa 7 months on

[thedjsupreme]

The symptoms still kicking on 7 months in. Still out of wheelchair (I'd say just)I've bought a mobility scooter. The council have been really helpful and speech therapy have been excellent. Old friends have been good to catch up with for an hour or so but I don't know if it's common but insomnia and depression have kicked in.

I was walking "little dog" 5km a day. That is down to 1 mile.

Loss of independence is a big thing and planning every trip out is a military operation.

My partner and her family are away on a once in a lifetime trip to florida (4 years in the planning)

Just need to get through this week

[Monkeyfeet1]

hi djsupreme,

Walking your little dog is great for both exercise and your mental health. Enjoy!

I hope the mobility scooter helps.

Speech and language have been most helpful with me and I have a zoom meeting with neurology this afternoon so we shall see…

Cherish those old friends.

I’m sorry but insomnia and depression are common - speak to your GP. X

[Spangle2000]

Hi there,

We seem to be experiencing quite similar things. The dog walking really struck a chord - I manage 1.5 miles at most where I used to go out for really long walks and that shorter distance is getting harder. I’m also 52 and finding the loss of independence challenging. I’m no longer able to drive or work (I’m a teacher - can you imagine).

It has really helped me though to focus on the things I CAN do and accept that my life has got smaller. Your friends will understand that visits need to be shorter and you’re still able to go out with your dog, although if you’re anything like me it takes a really long time. It’s also impossible to be constantly positive as this is such a huge thing that we’re facing. Sometimes it’s enough to take one step at a time and like you say just get through this week. Keep going…

[Monkeyfeet1 in reply to Spangle2000]

In an ex- teacher too! I’m 53.

[thedjsupreme]

I feel like pre sma was another life.

[Monkeyfeet1]

me too! I keep breaking down when asked what my hobbies are! X

[thedjsupreme in reply to Monkeyfeet1]

Everything I was doing focused on the physical Running, delivery driver. The only one left is dog walking

[Spangle2000]

I know what you mean. Things, including me, are very different now.

[thedjsupreme in reply to Spangle2000]

I'm trying to adapt. It is every single thing 24/7

[Monkeyfeet1]

keep going and think fondly of all those children you’ve inspired!

[thedjsupreme in reply to Monkeyfeet1]

I have just taken it each day as it comes so far

[Morganthreewheeler]

It’s a long journey, one piece of advice which I received from the MSA Trust was to plan for single floor living. I ignored this until my wife fell and broke her hip and we were forced to convert a lounge into a bedroom/bathroom

Also take as much exercise as you can, physical activity can help to stave of the condition

[thedjsupreme in reply to Morganthreewheeler]

Every day I am walking the 🐕dog . There are plans to turn the downstairs toilet into a low step shower and a bed in the living room.

[Morganthreewheeler]

I would get your local authority occupational therapist to advise you on this, if you can’t get one quickly you can employ a private OT person

The local authority will use this report to provide you with all the equipment you need

[thedjsupreme in reply to Morganthreewheeler]

It is already in hand. It's just a question of how long I can stay on my feet. How long did your wife ask if you don’t mind me asking?

[Morganthreewheeler in reply to thedjsupreme]

My wife went from normal walking to using a Rollator within a year. A year later she was spending most of her time in bed or in a chair but still using a Rollator to wash, bathe and use the loo. After her hip break she can only walk very short distances (10 metres) using a Zimmer frame and has to use a Sara Stedy for mobility with a carer. She cannot move anywhere without a carer for fear she has another fall

[thedjsupreme in reply to Morganthreewheeler]

Sorry to hear that. Frightening how time flies with this illness.

[adbrighton]

I’m a bit further on in this condition. Sorry to hear about your depression have you had any contact with your local hospice? Mine offered counseling which was very helpful.

[thedjsupreme]

I've not thought to try them although I do get a call from a Marie Curie Councillor once a week.