$64000 question

[Athywhite]

I know this is like the $64000 question but - is there anything else I can do to aid movement and balance, I walk my dog for 20-30 minutes everyday which is a struggle but I'm not bothered about that, I use my static exercise bike for 10-20 minutes as often as I can, these leave me very tired but I am getting more and more fed up of this, I have had this for a couple of years now and it really hit me when I had to sell my beloved motorbike, I am also currently in chemotherapy which isn't helping, I am willing to try anything. I have bought an electric scooter and I am fed up of the looks from people when I go to the shop on it so I try to walk it with my trusty stick. My whole body - shoulders, back, hips, arms feel like they have given up as they are sore and tight (like someone squeezing them) all the time.

I am under a Neurologist and it is difficult to get a proper answer from him

Thanks for reading

[Veteran250]

Hi Athywhite

If you need to use your electric scooter, you obviously need too, so use it and worry not about what people think, what they do, or what they may say..... you can always say to them, I wouldn’t wish my illness on my worst enemy..... I speak from expierience, I used to have a scooter, but now use an electric powerchair

Take care, stay safe, and be strong.

Don. 😀👍

[Athywhite in reply to Veteran250]

Thanks Veteran250, I think a lot of it is the embarrassment in my own head that is the problem, I go to the shop early before there is anyone about, I know I have to accept it but it's difficult, I'll get there in the end

[wobblybee]

😏 Before Chemotherapy I recall having more energy, I remember being able to spend hours happily pottering in the garden. After spending months on end ‘relaxing’ on the sofa I felt a different person. Don’t push yourself too much, it only leads to fatigue and that really will knock you off your feet.

[Athywhite in reply to wobblybee]

Thanks wobblybee, I keep doing stuff around the house and garden which used to be easy little jobs but they are proving to be difficult which frustrates me, I can't sit around as it's not 'me' but I do know I have to slow down

[cocobibi]

I'm so sorry to hear of your difficulties, I'm witnessing my husband go through similar experiences. He uses a wheelchair + Tri-ride attachment - if you enjoyed your motorbike you may enjoy this more than your scooter if the cost isn't prohibitive. He got his through Access to Work scheme. He also finds guided meditation very helpful to calm his mind. It's important to focus on the small positives, not let yourself speculate into the future and find something to enjoy each day ... something in nature, a smile, a podcast/programme, music. He used to go to a wonderful SGI Buddhist group, who have very localised groups but now finds the chanting difficult. It did however change his life and he's really not a floaty, spiritual kind of guy. Look for Deepak Chopra or other meditations on YouTube and the Headspace app is also very good.

Good luck, hope you find something that helps you feel more accepting of the things you can't change so that you can still enjoy life (even if with challenges) rather than spending time regretting what you can no longer do. Easier said than done but give yourself small, manageable goals, perhaps a partner/friend can help. And don't be embarrassed, this is about you having a 'differ-ability' not a 'disability' so it's great that your scooter gets you out and about.

[handout]

Good morning, Athywhite. You clearly have some enormous challenges in your life. You should not worry about what might be other people's thoughts. They are invariably completely different to what you envisage. Some may be curious but most will probably be thinking - "there but for the grace of God go I" and be admiring you, and especially for the diffident smile you should try to give them.

Regarding assisting movement and balance could you manage more outdoor walking exercise especially giving the neurons more practice with sometimes treading a very straight line and trying a bit of balancing on one foot (for the cerebellum)? Getting the pulse rate up over half an hour plus, four times a week, is also good for the brain though perhaps in a less specific way.

Good luck with the chemo.

[MaryRH]

I admire you for doing so much exercise. For myself, what made a huge difference was acknowledging that I needed to spend at least as long on stretching exercises as strengthening ones. The joint pain and headaches that come if I neglect daily stretches can be debilitating. We’re all so different, but I mention it in case it’s helpful, as your muscle spasms sound awful. It’s something a yoga or Pilates instructor would be able to help with.

[Hidden]

I developed ataxia about a year and a half ago- wobbly walking and balance problems. I have been to about three different neuro experts, the latest gave me core exercises as they believe the core is the bit that’s most important for balance and so far it has helped! I kneel on floor, ((dog like!) with knees apart, palms on floor (positioned with straight armsVertical from shoulders) I then hold one arm at a time out like superman and hold for a few seconds keeping stomach muscles tight. Then I adopt starting position and take one leg at a time stretching it out behind me in a strait position and holding for a few seconds. I do the drunk test walk(one foot right in front of the other) . Also, Lying on floor , knees bent and doing a bridge( with a band round my legs to stop the shaking. Also do squats, again bringing in stomach muscles. This may not help everyone but it has definitely helped with my balance. Good luck to you! This ataxia group are great!

[Athywhite]

Thanks for your replies, it does mean a lot knowing you're not alone in this. I am trying to be positive and I will try the exercises that have been suggested here

Thank you

[Happyfacexx]

I just used a walking stick and could only manage 4000 steps before lockdown then I bought a second hand walker and can walk so much further now because I was wasting energy walking unbalanced with the stick, slowly I've been building up and the other day I did just over 10000 steps with the walker, it is helping me a lot to walk further and quicker

[Athywhite]

I saw the consultant at Salford Royal last week who suggested I buy a pair of hiking/walking poles as using those would be far more beneficial than using a walking stick, so I did, another £27 for Amazon, I am willing to try anything so I'll give these a go