Last reply 4 years ago
New User – hello!

Hi, I’m Nick and have SPMS, and am now wheelchair bound, having been diagnosed 16 years ago at the age of 42. I am married with three children, the youngest of whom is now 21. So the disease struck in the middle of their childhoods, which was the toughest part of it for me and my wife. We have been married for nearly 30 years, and I feel desperately sad about what this affliction has heaped on my family. I know it’s not my fault, but it’s them I feel for.
I have been looking around this site and find it truly refreshing, even where there is uncertainty and anxiety. I love the honesty people share, the willingness to be candid, and the receptive encouragement from fellow MSers.
I now work from home in Kent. I used to drive up to London every day – whilst the upside of not doing that anymore is obvious, the downside part was worse than I anticipated. I miss the camaraderie of an office and the day-to-day banter, adult conversation and the exercise of the little grey matter! And so I have started a blog, where I share my passion for classical music. I would not be so presumptuous as to include it here, but I am only too happy to give its address if encouraged to do so – it’s very light-hearted.

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Anonymous
4 years ago

Hi @nicholaschh We are at similar stages in life. My only son is 23. And yes I too was struck with this in the middle of his childhood. It has been incredibly tough for us! I have been lucky enough to stay out of a WC, but only barely!! I am not a good blogger, but I suspect that you will find many here who might be interested. Best wishes!


harconan
4 years ago

I would like to read it if you wouldn’t mind being homebound myself I find myself searching for things to do. You sound like a strong hearted guy. I am sorry that you have so many disability’s but like you I try to keep my chin up. Thank you
Ryan


nicholaschh
4 years ago

Thank you for these warm responses already. Ok, with trepidation…manuscript2016.wordpress.com

Hope some may enjoy it.

Nick


stumbler
4 years ago

Hi @nicholaschh , and welcome.
You almost mirror my story. I had my first episode when I hit 30, but wasn’t diagnosed for the next 12 years. I have two sons, both grown up now. I also used to travel up to London each day, by train.
I’m now SPMS. Doing my best to stay out of the wheelchair, but am being sorely tested at the moment. I do intend to get myself going again and get back to my regime of swimming, yoga and Pilates.


potter
4 years ago

Welcome to the forum I am slightly older than you I am 63, I was diagnosed when I was 55, my son was 24 and getting married. I feel the same way about my husband as you do your family. I have ruined his upcoming retirement years, if fact he is going to keep working for a while so I can get good medicine. I am sure you will be a great resource of information for the recently diagnosed. Potter

Welcome to the group. I’m 43 and have SPMS now. Was diagnosed in 2009 but now I look back I was getting symptoms when I was 31+. I’m still working full time and not fully WC bound yet. I am very lucky that I work for a large company and any adjustments that need carrying out get done and I don’t feel too stressed…….we all know what stress can do!! I understand your pain as I love the banter and camaraderie too.

I’ll take a look at your blog and give it a read.


cherish
4 years ago

Good morning to you @nicholaschh

Welcome ?

Hope you are wellish today?

I began my ms journey in 1996 with optic neuritis. I chose to ignore it, I had a 3yr old and an 8mnth old.
They are now 24 and 21.
I gave in (not literally) in 2005 and let them diagnose me.
Like some of he above I’m not in a wc. I use 2 smart crutch (don’t go out often).

I’m about to read your blog.

Have a nice day Nick.

Lisa xx


tessa
4 years ago

Great blog Nick!


nicholaschh
4 years ago

Thank you! Much appreciated and uplifting too. And thank you all for the welcomes, confirms my view of this site.

Nick x


Anonymous
4 years ago

Welcome to the site! I’m kinda new too 🙂


claudia
4 years ago

thanks for the greetings. I’m new to this kind of site so may not be very active. Got a physio coming to see me soon so may write more later.
🙂


stumbler
4 years ago

Hi @claudia and welcome.
This site isn’t about being active. It’s just here when you want it. To answer questions, socialise or have a quick vent……….. 😉


jdunbar
4 years ago

Hi, newly diagnosed with PPMS? Having a hit of difficulty getting my head around it all. Feeling that every ache, pain or twitch is indicative of progression. Guess this is normal and find keeping busy helps . Prescribed Gabapentin but reluctant to take due to suggested side effects. Any ideas. J


stumbler
4 years ago

Hi @jdunbar and welcome.
MS can give us all kinds of nasty sensory symptoms, so do try the Gabapentin to give you some relief. All medications come with side-effects. It’s not that surprising as we are introducing something new into our bodies, so we have to allow our bodies a few days to get used to it.
If the side-effects are that intolerable, there are other medical options.


jdunbar
4 years ago

Hi, thanks for that. I think my concerns about side effects are a response to not being in the right head space yet. I’ll get there but appreciate the advice. It’s all a bit scary still! J


sarahjay
4 years ago

Hi @nicholaschh I love your blog, thank you for sharing it. I have wanted to learn more about classical music for ages but never quite know where to start so this is perfect. Someone suggested an audio version – I think that would be brilliant. I’ve recently been listening to audiobooks while doing all boring jobs in the house when I’m at home on my own and I love having something interesting to listen to.


nicholaschh
4 years ago

Hello, sarahjay, how kind of you to write that, thank you. I am thinking about putting an audio link on it too, just got to head my head round the tech! Nick

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