September 30, 2016 at 9:12 am #138660Reply To: Hello
welcome to forum. we are a friendly bunch. feel free to vent, moan and share those good days too.
Im from Scotland and have CMD fault on the SPN1 gene.
"""""""What doesn't kill you makes you stronger""""""September 30, 2016 at 10:33 am #138664Reply To: Hello
I’m Sarah from East Sussex. I have Ullrich Congenital Muscular Dystrophy.
Glad you have joined us!
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adamssar78ModeratorPosts: 2,246Joined: 05/03/2015October 9, 2016 at 6:19 pm #139222Reply To: Hello
I am completely new to this site, having been diagnosed with CMT in 2012.
You sound like a nice lady and I must admit it would be fantastic to communicate with someone who understands and appreciates what I am going through.
JulesOctober 9, 2016 at 10:15 pm #139226Reply To: Hello
Hi, I’m Shevvy and have an unspecified type of Limb Girdle MD. It would be great to hear from you and how you’re getting on. The forum is a good way of being in touch with others who face similar challenges. Welcome aboard!
ShevvyOctober 14, 2016 at 3:23 pm #141969Reply To: Hello
everyone, I’m so pleased to meet you Catatude, Sarah, Mike, Weeble,Jules and Shevvy. How are you all doing ? I’m sorry it’s taken so long for me to reply. Some days are better than others and I haven’t been online to check my mail recently. I’m still trying to figure out how to use the site. I’d love to know you all better and how your condition is effecting you all ? I’m a good listener. I’m pretty positive on the whole, but tbh I do struggle sometimes with the ever changing tides of my condition. I feel like I have got lots to offer still and want to channel my energies into meeting or speaking to folks in a similar position. Birds of a feather and all that jazzChelleParticipantPosts: 0Joined: 29/09/2016October 15, 2016 at 11:46 am #141981Reply To: Hello
All eminently good goals, and you should remember that no matter how bad the MD gets there is always something that you can offere to others, even if, as you say, its just listening. many of us with family and MD are probably reluctant to tell our loved ones how bad the condition is for fesar of worrying them. I for one have not mentioned the prolonged worsening of my FHSD since last Christmas.
You can always get involved locally by spreading the word through your GP suregry and similar locations that folk with MD do exist and have particular needs. Get involved witht eh site by responding to posts where you can, creating others that you think may help, and if all else fails just having a good old rant about something in your life.
Above all the site helps you remember that you are not alone with your problem. there are others here who care and above all udnerstand what you are going through. Do come back often it really is worth it.
So many love songs, so little love.October 16, 2016 at 6:04 pm #141993Reply To: Hello
Good to ‘speak’ to you again. How was your weekend? I’ve not done much myself. Then again I have a bit of a ‘man-cold’.
How are you feeling this evening? I always find this time non a Sunday a bit naff (unless I haven booked the Monday off work of course)!
I still can’t believe how many people stare at me when I am out and about with my stick. I think I’m less paranoid now, but you’d think no-one had ever seen a young(ish) bloke with a walking-aid. Children finding it odd I can understand. Even animals! But grown adults?
Apologies; Jules has had his mini-rant.
JulesOctober 16, 2016 at 9:25 pm #142001Reply To: Hello
Hi Chelle, Jules and everyone else!
How are you all? Has your weekend been alright? Back to work tomorrow unfortunately!
You would think that in this day and age people wouldn’t stare at someone with a stick. I think young children are probably more accepting of walking aids etc .. I am a Teacher of the Deaf. I work in a primary school with a provision for Deaf pupils. We also have many other children with additional needs – autism, cerebral palsy. They see me with two sticks, see me on my stairlift and some even on my scooter which I use to enter and leave the building and rarely say anything. If they do ask I say I need my sticks to help me walk and that’s it really. One child with Cerebal Palsy uses a wheelchair and a walking frame. My role is now purely assessment due to my reduced mobility. I no longer ‘teach’ as such. Do you think the Paralympics helped people like us in 2012? As stated I use a mobility scooter to get around. I have a hoist in my car so I can go out. However, going out is not always easy due to access, suitable seating and facilities. This I do find a struggle to accept. I have lost some confidence in going out socially. Sit to stand is a real challenge at the moment.
I only work three days, which is more than enough! I haven’t really done much this weekend either. I have completed my Performance Management paperwork and done other bits of work – yippee! I also watched my football team win today, which was great. They were on Sky.
I don’t know anyone else with MD so this forum is a good way to be in touch with others who are maybe facing the same challenges. At least we can share the challenges we face and hopefully come up with solutions as well. I look forward to keeping in touch, now that I have found people who have MD with whom I can empathise and share my challenges and hopefully the positives.
Enjoy your week and hope to hear from you.
ShevvyOctober 17, 2016 at 10:48 am #142945Reply To: Hello
I had a weekend watching peeps paint my house and do DIY lol. add in a little spot of Christmas Card making lol should have started that job in March lol.
Dont work a Monday so off out for some retail therapy.
"""""""What doesn't kill you makes you stronger""""""October 17, 2016 at 6:37 pm #142986Reply To: Hello
Productive Mondays all round then!
As the evinings (and mornings) become darker and the temperature lowers, I am slowly becoming more aware that Christmas is soon to be upon us. Luckily though my birthday is @ the tail-end of October and so I refuse to think of Xmas until the start of November at least. 2 months is plenty of time to be in the Christmas spirit I reckon?
JulesOctober 17, 2016 at 10:46 pm #142991Reply To: Hello
I don’t think my brain can cope with Christmas until mid-November!
Today I have been catching up with emails, renewing my wheelchair insurance and laundry. Dreaded dentist tomorrow
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adamssar78ModeratorPosts: 2,246Joined: 05/03/2015October 18, 2016 at 11:46 am #143034Reply To: Hello
We haev seven children and currently 6 grandchildren soon to be increased to 9, not to mention the cats, chickens and other animals that will need presents. Starts in December of the previous year for us, to make sure its affordable.
So many love songs, so little love.
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