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Getting a wheelchair

Getting a wheelchair has been on my mind for a few months now, as I can still only walk a short distance before becoming dizzy or feeling faint. That’s assuming that I’m well enough to go out in the first place.
My son is 21 months old and I would love to be able to go and feed the ducks at the local lake, take him on day trips etc but it’s not possible right now.
I’m under the care of Dr S and still increasing his prescribed medication. I hope that one day he will get me to at least 80% better, but for now I need to accept that I’m not getting better any time soon and can’t continue to have it prevent me from living a better life for my son.
Has anyone else thought of getting a wheelchair?

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The amount of hope, practicality and grit you packed into that statement was amazing. My first reaction was grief for you and for all of the MAVericks that suffer the same misery. But your awesomeness shone thru. I’ve thought about a cane, but not a wheelchair. You do what you have to do to reclaim your life. If that’s a wheelchair, then it’s a good idea. But, that will also force decompensation. Have you considered a walker with a seat? It won’t transport the baby, but it does at least keep your vestibular system in the game.

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Hi, and so sorry to read of your predicament. I’ve had chronic MAV since December 2014 but no, I have never considered a wheelchair. If you do decide to get one just try hiring one. You don’t want to make this a permanent thing IMO. It will be all too easy to become dependent on it and what MAVers really need to do is to walk. Consultant told me I must walk outside every day. It aids compensation. In fact when she found out I’d reduced my exercise due to domestic circumstances she blamed that for my balance symptoms having worsened. Walking aids, poles or a stick were suggested to be very early on with chronic dizziness by the VRT bod who also insisted on the outside walking routine at all costs. She said on bad days walk with a stick on good days go without it. Much like you I’m still awaiting the ‘good days’ although having said that I am gradually weaning myself off using a stick. One becomes dependent almost immediately. ‘A walker with a seat’ as suggested by @flutters could be good idea. Better for your balance than a wheelchair.

I don’t know anything of your history but I really feel I must add in a note of my first reaction to your post. My first thought was here is a young woman missing out on her offspring’s childhood because of immobility as a result of MAV. I’d say time to get back to the consultant/find another consultant whichever and demand a big and immediate treatment re-think/diagnosis re-evaluation or whatever it takes. This isn’t good enough. This mother deserves more. Helen

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^^ THIS ^^

I suspect your symptoms will only get worse if you don’t keep striving to compensate. Sure, it can be blumin uncomfortable, but 100% worth it.

A wheelchair is not a solution.

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Hi Louise,
I agree with what others wrote above, what grit you have.
Like you I have a young child and I can get very sad when I think about how little I’m able to do with him out of doors.
May I ask what medication and dosage Dr S put you on? I’m also under his care and currently at 70 mg nortriptyline.

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Afterthought: do you not still have his pushchair you could push for stability. Obviously you have to build up distance/stamina. First time I went outside, for a walk around our own garden, after five months not leaving the house basically because of photophobia, my husband actually had to physically hold me up using both arms and I did about 100 steps max. Helen

Thank you for your comments, the pushchair definitely helps and has enabled me to take my son to a local church baby group every week, I just need to do more for him without rushing the healing process. Hopefully I wouldn’t need the wheelchair for long
For the negative nancy comment, a wheelchair would allow me to travel distances and go to places that I can’t right now. This would be alongside building up my stamina by walking within close proximity to my house in case I start feeling faint, so the wheelchair wouldn’t affect the physio side of healing.

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It wouldn’t as long as you used it sparingly. We MAVericks decompensate fast and heal slow. We’re not being negative nancies. We’re trying to make sure you don’t end up wheelchair bound from a disease that doesn’t have to go there.

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Thank you so much for your lovely comment. A walker with a chair is a brilliant idea, I’ll definitely consider it. I was thinking along the lines of a wheelchair so that my son could sit on my knee while my husband pushes us and if I feel ill while on a day trip, I can be wheeled about without worrying about having to walk

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Your comment wasn’t negative at all, it was really reassuring and insightful :blush:

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I completely agree. Thank you for your sympathy with regards to caring for my son. I would continue with my daily outings by foot close to home, when I’m able to, but the wheelchair would allow me to take my son places that we can’t go at the moment. I certainly don’t want it to be a permanent thing :blush:. The pushchair has really helped me walk further so I will keep using that

How old is your little one? It’s so difficult isn’t it, having to stay inside or play in the garden when there are so many places we could be taking them.
Dr S has me on pizotifen and pregabalin, which seemed to be working well until a month ago. I also take the mini pill to regulate my hormones which has helped tremendously

While I agree that it’s not a solution for the illness, it is a solution for being able to take my son on day trips which I would otherwise not be able to do. I’m merely thinking about what’s best for him in the short term, while I continue to increase my stamina on foot close to home

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Sorry you are suffering , my heart goes out to you.

Might i suggest a cane or walking stick. It increases proprioceptive input to the brain and prevents falls.

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Thank you :blush: that’s a great idea for increasing my mobility close to home. I currently rely on my son’s pushchair for stability on short walks, although he’ll soon grow out of it so I’ll look into one then

you can get the stick with 3 prong bottom for added stability. Slowly graduate to the pin pointed stick.

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Ay, my heart goes out to you. My son is 22 months. I think having the option of the chair will give you confidence of going out to other places and once there you can walk unassisted or with a stick. Do it, just the excitement about going places will help. Sending you love

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Really sorry to hear the meds stopped working a month ago. Was there anything that triggered the setback?
My little boy is nearly five. When I was still with his dad we would go on days out together and even travelled abroad for three weeks, but we separated six months into the illness and now I’m on my own without any family to help nearby and don’t have a car anymore I’ve had to accept that for now I won’t be able to go far afield, we mostly stay in our neighbourhood, and occasionally take the bus into town.
Hope you soon feel some improvement and get to be able to do more physically :slightly_smiling_face:

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Don’t dump the pushchair. Pity he’s a lad and not a lass or you could take her dollies out for a walk in the pushchair. I know several people who take a pushchair for when their toy dogs get tired. Pushchair might offer more support than a stick over distance.

I’ve heard people say this before. What makes you think that if I may ask? Surely it’s more likely you’ve had a bit of a relapse/breakthrough for some reason that’s not currently obvious to you. Something minor has changed and symptoms have increased. I know you’ve had MAV `for some years and remember @sputnik2 saying Dr S told her in those circumstances to expect a long bumpy road rather than a smooth journey. Lets hope that’s all it is. A ‘Blip’ as the VRT bod used to call such things. Helen

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Exactly. I’ve had some bad months. I once went 6 months without a vestibular attack, then was hit with an almighty one that took weeks to recover from. But recover I did and I was better than ever.

Just power through those dips and know that you will always get better again.

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