Are you ready for a wheelchair? It may just improve your QoL. #MSBlog #MSResearch
“MSers fight reaching disability milestones that require walking aids; splints, sticks, crutches, frames, wheelchairs. This is not surprising as it is an open acknowledgement that your MS is progressing. By fighting it you are saying this disease is not going to beat me. However, once you accede and get the aid, things improve. A recent example of this week was a lady who walked into my clinic this week with a near normal gait; 3 months ago she was dragging her right foot and having frequent falls. She has just been fitted with a FES (functional electrical stimulator) to treat her dropped foot; a wonderful result. I am therefore not surprised with the study below that shows that when MSers start using a wheelchair their quality of life improves. The effort of walking prior to using a wheelchair can be very exhausting; the mental and physical energy it takes some MSers to walk is extraordinary. Not to mention of the anxiety of doing it. Will I get there? Will I fall? Getting into a wheelchair overcomes this and often increases, rather than decreases, your mobility. It also speeds up mobility; getting from point A to B now takes seconds rather than minutes and the energy expenditure to do so plummets. This also helps your family and friend by makes it easier for them to help you. If you haven’t watched it yet I would recommend watching Belong a movie by Shift.ms about MSers getting beyond the diagnostic stage; there is a very telling wheelchair moment in the video that captures a lot of what I am trying to get accross.”
Devitt et al. The effect of wheelchair use on the quality of life of persons with multiple sclerosis. Occup Ther Health Care. 2004;17(3-4):63-79.
Background: This study describes the effect of wheelchair use on the quality of life of MSers, and examines the clinical utility of the Psychosocial Impact of Assistive Devices Scale (PIADS) as an outcome measure for use by occupational therapists.
Methods: Sixteen hospitalized adult MSers were interviewed using the PIADS. Descriptive comparisons of PIADS subscale scores (competence, adaptability, self-esteem) were conducted for participants using different types of wheelchairs, daily versus non-daily wheelchair users, and participants who required different levels of assistance to propel their wheelchairs.
Results: Using a wheelchair has a positive impact on the quality of life of persons with MS. The PIADS was found to be clinically useful for exploring person-environment interactions and appears to be well suited to the goals and values of occupational therapy.
Conclusions: The paper makes recommendations for future research and for incorporating the PIADS into occupational therapy practice are discussed.
When I was dx I decided that I'd call it a day when the need for a wheelchair came – perhaps it's a man thing. While you are no doubt right that it could improve mobility, it also is another major milestone in terms of the losses this disease delivers. I wouldn't be able to work (no lift at my small train station), I wouldn't be able to get to the end of my garden, I wouldn't be able to walk down the aisle at my daughter's wedding, I wouldn't be able to use the upstairs of my house – the house my wife loves. I think the neuros / researchers really underestimate the losses caused by this disease and the stress of looking forward to continuous worsening. I've lost too much to this disease – sport, long walks, being worry free. I won't let it be on top forever and will be out of here before the wheelchair stage. If only drugs to stop patients getting worse or to give back some lost function were available!
Quality of life is all relative. I have so empathy with anon above. In reality an MSer in a wheelchair is quite different that many others who are in a wheelchair. A friend was in a motorbike 10 years ag and an accident put him in a wheelchair. But he doesn't get worse and worse like MS. He knows he's in it for life but is fit – play competitive wheelchair basketball. He's thinking isn't affected. For an MSer, the wheelchair is just another step up the EDSS – one away from bedridden. As anon says its the stress of knowing what's ahead that's the killer. Filing us with antidepressants, antiincontince tablets, anti spasticity drugs, and then giving us a wheelchair isn't quality of life.
I agree, Anon 08:30 I've fought tooth and nail to stay ambulatory. MS screwed up my gait and I have arthritis in both knees now, so I use a stick to help – but then, I'd be using a stick if I didn't have MS..but then, MS did this to me…Anyway, I changed my life and reassessed what will make me too tired, or if my knees can do an activity or not. If I started to progress and lost my leg strength, I think I'd just turn my face to the wall. I hope it never gets that bad, but of course, this is MS and without a crystal ball…The wheelchair issue has a huge NO!, like an emotional brick wall. It would be the beginning of the end for me.
I have PPMS. I just turned 35-years old. I got the disease pretty young and have advanced to the stage of needing to use a wheelchair when outdoors.My wheelchair has freed me up in many ways. I can go to the gym, gigs, cinema and out with my friends with greater ease than before. I find it offensive when PwMS start crying at the thought of having to use a wheelchair and declare a death wish. What a stupid logic to have. You have to either adapt or die when it comes to MS, therefore stop being weak and get a backbone (no pun intended).I hope there is a breakthrough in treating progressive MS, but I won't let the lack of one hold me back. Life is for living and I intend to live a good a one as possible considering my limitations. It is massively myopic to presume that a wheelchair signifies the end of one's life. It doesn't. If I continue to get worse then I'll order a powered wheelchair; if it gets worse than that then I'll deal with it too. I shall not end my life because of the stigma of being in a wheelchair.However, I do support the right to end one's life if they live in pain and are bereft of dignity. I think the UK is very primitive in terms of legislating on the option for right to die for those with terminal diseases.I remind you: MS is not terminal.
It may not be terminal, but it takes away your life, hopes and dreams. You're approach is just different to mine. There's no right or wrong. But for every wheelchair user who is positive like you, they'll be someone like me who has a different take. I ran, I played sport competitively, I love to track through the wilderness. Life was like the finest steak. Once you've tasted such great food, living on the scraps isn't for me. Life should be fun and carefree. Being ill everyday is not life, in my view. Best wishes.
Yes, I agree and have friends who use wheelchairs to help them walk. I was thinking about wheelchair warriors comments and of course, his situation is different. My big 'NO' to wheelchairs was a gut reaction. So what I did was I read a lot, took advice from others with RRMS and inspiration from the people who have recovered their strength. If you aren't disabled with RRMS and have given up walking or exercising through fatigue, then do try and get back some stamina with help from neuro physios. Stamina must be built.I had a couple of knee operations just before diagnosis and was told quite firmly by the physio, that my muscle strength would deteriorate after just a few days. The messages don't always reach the brain, but keep up – Tai Ch'i exercises are a good start. Dr Terry Wahls' 'Out of the chair' is also inspirational. Roger McDougall's article was the reason that I started to make changes to my life. You can fight back. But if you have RRMS and are sitting at home, eating junk and smoking, then you will deteriorate faster.Oh and don't stop your DMDs. Take the drugs and do the exercises and eat a healthy diet and take D3 or live somewhere nice, with less humidity and grey days. I got my life back. I never thought I would, having struggled to walk 10 metres in 05. We all have to find our own way through this. Walking may be difficult, but it won't get any easier if you stop.
No, being able to walk and not wanting to use a wheelchair is not a 'man thing'! Wanting to use 'snazzier' technology is not a man thing either! It would be great to be able to use Segways in the UK – you can get them with little perching seats on, I believe.
Using a chair doesn't hold the same horror for me as for some of the MS'ers above. I use a stick when out of the house, a stylish walker if I'm accompanying my partner on a dog walk and have a chair for family days out when I know my stamina will have run out before the end of the trip. I want to stay mobile as long as possible and a stick or chair are simply a means to an end.What frightens me is losing my sight and/or losing my wits. I can't yet wrap my head around how to maintain a good quality of life with severe sight problems. And gross loss of cognition is the stuff of my nightmares.