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Darlene 09-11-2014 01:26 AM

Nice to meet you!!
 

Deb,

:Wave-Hello: It is great to have youcome and be with us. There are a great number of dear friends to listen when you are in need of ears. Please let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. :smileypray:

Darlene :hug:

kidztales 09-13-2014 08:13 AM

Reply to Lara
 
Hi Lara,
Thanks for the welcome! I've been mis-diagnosed with MS for 30+ years. I changed to a new neuro about 3 years ago. He's the one who found the mis-diagnoses & that I have spino cerebella ataxia. I want to learn about what I have since knowledge is power. Are there any magazines or websites that do this? I mean ones that explain in plain English & not all those medical terms.I hope I get some answers from all those tests too.
Deb

Lara 09-13-2014 01:27 PM

Hi again Deb,
How are you doing?

There is straightforward info on this first site I think.
Second link is from same place but has downloadable Fact Sheets.

Ataxia causes
Ataxia resources and FAQs
From the National Ataxia Foundation.

http://www.ninds.nih.gov/disorders/ataxia/ataxia.htm
NINDS Ataxias and Cerebellar or Spinocerebellar Degeneration Information Page

Hard to find ones that are less "medical", Deb but there are some older posts here in the forums from people who have been diagnosed with spinocerebellar ataxia. If you use the search feature that I post below you can type in keywords and it will bring up those threads and posts.

NeuroTalk Forum Search Feature

You could start a new thread in either
Movement Disorders Forum
or in
General Health Conditions and Rare Disorders Forum

I would make the title "Spinocerebellar Ataxia" and that way if people are searching for this particular condition the thread will come up in the search more easily.

Edited to ask: Do you by chance have celiac disease?
Any family history of ataxia or have you had any genetic testing to determine a particular "Type" of spinocerebellar ataxia that you could have (as some are hereditary).

take care there and sorry to be so long-winded.
Lara

Texan in UK 09-18-2014 07:41 AM

Similar story
 
Quote:

Originally Posted by Andy_Pablo (Post 1094820)
Hi. Im Andy. Im 35 & have severe chronic pain due to a crushed & trapped nerve in my pelvis from long distance cycling.

My story story started three years ago when my father passed away. Me & my pops were extremely close before a falling out put distance between us. When he passed away, I didn't know how to deal with him never being around again & also never being able to patch things up. This ate away at me & I unfortunately locked myself away in my own head & became a bit of a 'character recluse'. This took a terrible toll on my thirteen year relationship & eighteen months ago, my girlfriend decided enough was enough & walked away. Cant say I entirely blame her, as I can see now that I wasn't the easiest to live with & love anymore. She summed it up by saying that she didn't think I was 'in love' with her anymore & that I wasn't the "happy go lucky cheeky chappy" that she had been in love with for many happy years...

After my relationship ended & I lost my home, I threw myself into a mixture of alcohol, cocaine & my job... Working 15+ hour days for five days per week & then drinking & snorting myself into oblivion for the other two, was how I lived my life for months after the split. I finally decided to sort myself out about July last year. Was going to the gym, running & cycling. I had always been extremely active with football, running, kickboxing, weights, surfing, etc, but I had never cycled. I had friends who cycled a lot, so I figured I would just join them. I picked up a road bike & set about regaining my fitness. Started off with small rides of about 15-20 miles & regained my fitness levels in a few weeks, so as I had a desire to push myself, I started to do 20-30 miles a few times in the week & my last cycle was a 50 mile ride. Unfortunately, as a complete novice, I was totally unaware that a bike needs to be set up for individual body size. My bike was set up completely wrong for my body shape/size & with doing so much, so quickly, I did damage to my pelvis & that crushed & trapped nerves. This has caused excruciating pain which starts from my hips & distributes itself down through my groin, to my knees.

It took a couple of months bad form from the cycling to make the pain become constant. I had ignored it to that point thinking I should just "man up" & it would sort itself out over time. Twelve months on & it has become worse & worse. It cost me my dream job as a graphic designer in the sports industry. In the space of three years, I had lost everything & was in pain I didn't realise existed so I looked for a way out. I was helped by my brother to get through the worst of my slide into my dark place.

As of today, I am in the process of receiving cortisone & anaesthetic injections to try & reduce pain & inflammation on the ligament to try & 'untrap' the nerve & hope it can settle itself over time. They don't really help much. I am told that it is unlikely that my injury will ever fully recover & the most probable scenario is that the pain becomes "manageable. I am practically housebound twelve months after initial injury & have had exactly six blissful days which have been what I would class as manageable.

I find it incredibly frustrating to have gone from being extremely active, to having to ask for help with the simplest of tasks. I also find it very difficult coping with not being able to continue with my career.

But despite all of the above, I am trying to look forward. I have a favourite quote which reads, "credula vitam spes fovet et melius cras fore semper dicit..." The translation for that is "credulous hope supports our life & always says that tomorrow will be better..." Despite the overall definition of credulity being one of gullibility, I choose to interpret it as 'trusting positivity'. I choose to have hope that tomorrow will be better, despite how unlikely it is. I have been at the bottom of a dark hole feeling the floor fall away & its not a fun place to feel like the loneliest person in a room even though you are with people who love & care about you. So I choose to try & see the good in most situations. I choose to believe in hope...


Cripes, that is a long post! Its good to get things off the chest though, so thank you for reading.

Hello Andy,

I've never done drugs or abused alcohol but there are some striking similarities in your story.

To be brief, I lost my mum after she essentially disowned me when she became an addict/alcoholic because she started self-medicating as they say. She was ill, had Lupus, and I was her caregiver until I was 20.

I worked 2 jobs, went to Uni, and devoted my life to her. I took her everywhere she needed to go, assisted her at home, etc. I will never love anyone as much as my mother. She was the most amazing person I've ever met (and I don't use that word lightly like everyone else these days). Even though our relationship had many troubles, she loved me and she was my best friend for many years. Once she started stealing from me and inviting drug addicts over, I had to leave. After that, she called when she wanted money, would refuse to let me into her house, and even forgot how old I was and what I looked like eventually.

I got a call at work 8 years later from my old job telling me to call a distant relative. I knew immediately what it would be. I rushed to the hospital (I lived in another city) and saw my mum that night, with foam coming out of her mouth and blue fingertips after she had been taken off life support. To this day I wish it had been me.

To make matters worse, my job forced me to work the day of her funeral so I missed it and then her family stole her multi-million dollar estate from me, her only heir. They even took the photo albums.

I was hit by a drunk driver just over a year later. Many people have said to me in the years since that they can't believe I made it through all of this without turning to drugs and alcohol (I literally have no support system as I am completely estranged from all family and my friends got tired of helping me out and hearing my excuses as to why I couldn't go out). It's just never been my thing but I can understand the allure of it when in the depths of pain and despair.

I once had a gorgeous pinup/marilyn monroe body, never skinny but damn I looked good (I now realise). Inabilty to exercise has caused me to gain more weight than I could ever have imagined. I used to be pretty and talented, now I'm a horrific looking blob even though I'm vegan and only eat once every 48 hours. I hate that people think I stuff myself with cheeseburgers and milkshakes all day when I'm actually having hunger pains constantly.

I'm from the States and have lived in England for over 2 years now and I'm sorry for being an internet weirdo and sending you a friend request but I am eager to meet others in the UK who can understand and relate to at least some of what I'm going through. I apologise for such a lengthy response, once I get started it's hard to stop. I wish you all the best and hope you find some comfort here.

Andy_Pablo 09-18-2014 01:42 PM

There is no need to apologise at all. This place is fantastic for people like us who have had a difficult time & are in need of support. Thank you for the friend request. Where are you based in England?

Any time you need to chat to someone, drop me a message :-)


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