Making memories for our young family as we live with Motor Neurone & Fabry's Disease

How I have dealt with changes in my life

September 2nd, 2016

I apologise in advance for the bluntness of this post.

Both Liz and I get asked for advice in one way or another about all aspects of mnd. I wish to express my views on this and they are mine not Liz’s. I wish to start at the beginning and touch on all the aspects of mnd that have affected me and made changes in my life.

I was diagnosed in August 2013 at this stage I had muscle weakness mainly in my right arm and hand, also in my left hand and my walking was becoming different.

Diagnosis was very hard to accept and took around 2 to 3 weeks to begin to understand. The first thing that changed was that I notified work of this and they were understanding and stated I could continue to work as long as I felt safe to do my job but they would intervene if necessary. Meanwhile my wife Liz did lots of research and none of it was great to hear. In all honesty I switched off a bit and didn't really want to hear it and wasn't particularly keen on the idea of disability living allowance, infact if I had filled it in , I would have got nothing as all was well as I saw it, I now know that to be denial . Initially we got middle rate however after obtaining a DS1500 we were then awarded high rate and Mobility. As at the time I could drive ok I rejected an automatic car and got a manual however within 6 months I regretted this choice and wished I had got an automatic. Meanwhile we obtained a disability scooter through the mnda with the help of dove House Hospice. Once I got used to the idea it was great and enabled me to get about safely, especially as I was falling a lot and had a season ticket to minor injuries, also it was fun as the kids rode on to.

During a visit to Sheffield hospital, it was advised I should consider non-invasive ventilation and decided to put the wheels in motion to obtain one from the local ventilation service. The idea of this sounded ok however in reality I don't get on very well with this, mainly for two reasons, I don't particularly get on well with it during the night and I have not felt any of the benefits that I was advised, at the moment I don't consider it helps me as my breathing still remains over 50%. My ventilation nurse maintains I am non compliant and makes a joke of this. I do believe when it is needed I will wear it and that I am very familiar with how it all works and feels.

All the time I was slowly deteriorating and losing weight, this was addressed at Sheffield hospital where they suggested a feeding tube. We went away and after the week or two I decided to have one fitted as I had lost 2 stone. I ended up with a Rig as I had a NIV – none invasive ventilation machine. I won't go into the details but I did do a video on this which is in our video section. After several months I had regained all my weight and to be honest felt a lot better. Infact 2 weeks after having my rig fitted I Walked Halfway across the Humber Bridge for the mnda. I had an assessment for an electric wheelchair which I was against and Opted for a manual one, so it could be left in the shed and deferred the electric till later. This in its self was not a great idea as when we ordered it, it took over 3 months to arrive and we had to fight for a riser function which would have cost us a lot of money had the mnda not helped us out with dealing with the local wheelchair services.

Due to my decreasing lung capacity I was given a cough assist machine which I do get on with and also feel the benefit from, especially when I have a build up of secretions or a cold / chest infection. If I get a chest infection, it is vital to get rid of this as soon as possible and also prevent the chest infection getting worse, so I use the cough assist daily and more when required although the machine is turned up to maximum as my capacity is still reasonably good.

By March 2015 Liz had in place a care package which amounted to 24 hours of care per week which we employed through direct payments 1 carer to do 3 days per week, within the matter of two months this has been extended to 44 hours per week enabling us to have a carer 5 days per week.

This helped a lot as by this point I was unable to lift my scooter from the rear of the car as I needed help to basically go anywhere. We had started to look down the route of an adapted vehicle and after months of assessments and the stress of trying to find vehicle, we finally were visited by an Motability assessor who to be fair was very Blunt and told me it would have to be a wheelchair accessible vehicle to cater for the future also and at this time I was more suited to my Wheelchair as the scooter did not offer the support I needed, also at this time we had no method of transporting the 25 stone wheelchair. As the process of getting a wheelchair accessible vehicle is rather lengthy, I was also at the stage where I was really struggling to get out and about and likely to fall and seriously damage myself. Our only option was a Mercedes Sprinter van which was 2 years old as a new one with take over eight months to arrive. Obviously I didn't have 8 months to wait so in January 2016 we had the van delivered. we needed a vehicle of this size as there are four of us and a carer to transport and also this allows me to be able to drive the van still which I do to this very day. I was reluctant to go for a vehicle this size but after receiving the vehicle and trying it out I now believe it was the best choice for our situation, I can also go out on my own if I so wish.

I had been struggling for some time with thick secretions at the bottom of my throat, meaning I had to swallow all the time to try and clear the blockage. Also choking and on occasions, causing the inability to breathe. So after speaking to my ventilation nurse they suggested a suction machine, this enables me to suck out thick secretions as far down my throat as I am prepared to go. I have found that if I put it far enough to make myself gag then it helps me cough and bring up all the thick secretion and clear any blockage. I mainly use the suction machine when I have a cold / chest infection as this is when my throat is the worst. I have to say this is not a particularly pleasant experience however; it is a means to an end of clearing the blockages and hence saving the possibility of choking to death

I recently acquired a nebulizer for the purpose of loosening thick secretions. I get on with this machine and feel the benefits and it only takes around 10 to 15 minutes a time.

My Care Package has been increased further this includes an evening Call for one hour to allow me to get showered and ready for bed, also care on a weekend. Again I was reluctant to accept help with personal care but when it gets to the stage that you can no longer wash your hair and your wife has to look after two small children, I felt I had to embrace change for the better and for my family life. Having carer’s means we can still enjoy life and get to go all over and do lots of crazy things as a family. If Liz hadn't sorted all these things out and I hadn't accepted them then I have no idea where we would be. I do know if I hadn't accepted certain elements, the feeding tube, I would most likely be dead now. I don't like all these changes or been in a wheelchair but now I accepted these changes, I have a great quality of life and enjoy lots of family time. We meet lots of great people and have made lots of new friends.

I don't feel I have been obstructive too much however I do acknowledge I have been very reluctant to accept certain help and equipment, but I understand now that these choices are instrumental to my survival and I have to decide carefully what to do when information and equipment is offered to me, more so I have learnt that lots of these things you have to ask for as they're not always forthcoming. All of this is down to my wife Liz who has fought for my rights and survival, but don't get me wrong it takes a lot of effort and been damn right stubborn towards the disease to not let it get the better of me.

Going to the toilet has recently become a big problem and still is but we have recently been given a convene set and this works out very good for me but Liz is not too keen on this, I am not really sure why but I guess as I am entitled to my choices, so is Liz.

The choices I have made have been the right ones for me, whether those choices were pushed onto me or made by myself. The top and bottom of it is if those choices had not been made I would no longer be here, so I am thankful for what I have now. Not only do the choices I make affect me but they affect those around me and those around me want me to stay so that is what I will do. We do this blog as a way of creating memories for my children but also to try and help others find strength and comfort in the knowledge they are far from alone. Please feel free to ask us anything, all our details are on the main page.

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