6.
These are my feelings and my thoughts, no one else's, just mine.
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In June 2013 my Dad was dealt the card of Motor Neurone Disease, a horrible disease. MND attacks the central nervous system and causes muscles to weaken and waste away. People with MND have to struggle everyday with activities that wouldn't have affected them before. It can be different with each person but sadly the outcome is always the same, there are no survivors, only true fighters! There is no cure...
In some cases of MND the person can also have Frontotemporal Dementia. A less common form of dementia but nevertheless devastating. My Dad also has this...
I first realised that something wasn't quite right around January 2013, my dad and I were sat in a cafe and he couldn't open a folded lottery ticket my exact words to him were "can't you use for hands or something" his reply was "no, my hand has got really weak" I asked him to make a fist with his right hand and he couldn't. I immediately was concerned, I contacted my brothers asking if they had noticed anything but they hadn't. Around this time he had become quite obsessed with moving down south but to me that was nothing new because he's from there and often mentioned it but slowly I was noticing that his behaviour and his general tone was different.
Every time I saw him after that day I was asking how his hand was, I was trying to figure out what it could be. I told my work colleagues about it and they kept telling me not to worry because he was having tests. It wasn't until my mum mentioned MND and showed me a website all about it I really started to worry. I felt deep down that I knew it was that, muscle twitching is a big sign so I would sit and stare at his arms, I'd watch as the muscles in his arms and legs were going crazy. He never complained. In May 2013 I went on holiday and I believe it was around the 8th he was having final scans and tests. By this time I had pretty much convinced myself it was MND, his right hand was unbelievably weak and his left was starting to deteriorate as well. They started to look hollow, I'd never seen anything like it before.
In the June my Auntie (his sister) came up for the results. I will always remember her face when they returned from the appointment as she got out the car. It was MND. I didn't react, I didn't cry I just stood there awkwardly not knowing whether he wanted fuss or to be left alone. That afternoon I went to work and before I started I told the women I work with the results, I think they may have reacted a bit more than I did at that point. I imagine my lack of emotion was shock even though I thought I knew. I expect the worse but hope for the best but there was no best in this situation. It wasn't until the Saturday at work when my reaction came out, I balled my eyes out!!
Over this last year, it's been really difficult I won't go into details of things that have happened because of the FTD and MND but its been hard. Back in June of this year the family and social workers made the decision and so did my dad that he would be safer and better off in a nursing home. For the times that no one else can be around we all know that he is safe.
At the moment my dad is still able to walk, he can still talk but the FTD affects how the thought is articulated into speech, when he talks many words are missing and he often goes from one thought to another as though its the same. He has phrases and words that he sticks too. He has no filter so I often find myself telling him that he can't call strangers 'wankers' (it is quite funny at the time but still). He struggles with food due to the weakening of the muscles in the throat and his arms are now becoming very weak so opening car doors or pulling himself from a seat is proving difficult.
Seeing a loved one going down this awful route of life is just that, awful! Since the diagnosis I have tried to talk to others who have experienced this and I have tried to ask people for advice. I've known the physical outcome to this since the start so mentally I've been preparing myself for the day he might not be able to walk and talk. I can not prepare myself for what the dementia will do to my dad. Each week I see him I find it harder to accept. I am very angry about it and I cry because it's so shit! I wish I could take these illnesses from him and make him better. I wish there was a better future for people with MND and FTD.
I wish there was more awareness!
If any of this comes across as selfish I haven't meant it to be. I can't go into much more detail about things that have happened. It wouldn't be fair for me to do that. And it's too upsetting. I will blog again about my dad as things develop and progress.
Much love
Beth x
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I lost first my Mum then 5 years later (last year) my older brother to MND. My brother showed some signs of what we thought was dementia but he & his wife would not discuss his mental state. You have my sympathy as it is so hard for the family to deal with xxx
ReplyDeleteBeth thanks for sharing your thoughts. my dad also has mnd and the dementia element. it is such a frustrating and sad time isn't it seeing our dads lose strength. my dad has bulbar type so his speech is getting much worse. that was his first symptom but hes also getting weakness in his hands. like you me and my sister didn't react with great displays of emotion at the time. it is such a big shock and huge thing to take in. we have known a year but I still think we haven't fully absorbed it. like your dad mine also muddles words and cries uncontrollably at things he would once not have and also laughs at innapropriate things. such a cruel cruel disease. we send our love xx
ReplyDeleteHi Katie, I can not express enough how much your situation and your dad mirrors that of ours! if you have facebook or twitter please feel free to contact me again just to talk if you ever need too. I also send my love to both you and your sister xx
DeleteHi Beth,
ReplyDeleteSo sorry to hear about your Dad.This is the first time I have ever written anything about MND and what it has done to me and my family. My sister and I both live in Malaysia, My mum had been going for test as her voice started having a strange high pitch to it , November 2012 my sister and I had a skype call and our parents told us what mum had been diagnosed with. .My sister has medical background so she new what it was. . and I had no idea so spent the whole night on the Internet. It was heart breaking at the time and then all we could do was carry on. . mum lost her voice first, then her mobility started getting wobbly and she couldn't it through her mouth, now as I'm visiting her she can hardly walk or lift her head up. This is so difficult to see, but I still stay strong and happy in front of everyone as mum always has a smile on her face. But at the same time I feel devastated and very bitter towards things I shouldn't. I guess it's nice to let it all out on here. I am moving back in Dec to be with Mum in this precious time.
Sorry for letting it all out on your blog but it felt like a place I felt comfortable to do so.
Hope everyone stays strong
Ali xx
Hi Ali
DeleteThank you for sharing your story with me, a complete stranger, sometimes strangers are the easiest people to open up too emotionally. Im so sorry that your mother has been diagnosed with MND it's difficult but we all have to remain strong. Do tell people how you honestly feel if your having a bad day, I can be awful to my husband sometimes because Im not telling him how im feeling.
Feel free to find me on facebook or twitter if you want to send me a message.
I'll carry you and your family in my thoughts.
Much love
Beth x