Forum Replies Created
October 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 10, 2016 at 9:10 pm #139339Reply To: Looking to make friends
I’m Shevvy and have an unspecified type of Limb Girdle MD but am hoping to get a precise diagnosis at some point. It’s taking years though! I am down the M11 from you, junction 7 I think. I’m interested in hearing from others who have MD and how they get on with life. The forum is an interesting place to be in touch with others and to share experiences.
ShevvyOctober 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 1, 2016 at 11:12 am #138813Reply To: limb girdle 1b
Hi, I have a type of Limb Girdle MD and am still undergoing diagnosis. I have been told that I have a rare type, which is why my diagnosis is taking so long. I’d love to hear your story or anyone else’s about how LGMD affects you.
ShevvySeptember 30, 2016 at 2:20 pm #138745Reply To: Newbie from London!
Hi, I’m Shevvy and I also have a type of Limb Girdle MD. I am still going through the long,in my case, process of diagnosis. I have been told that it is a rare type.
I live in Epping, Essex which is the last stop East on the Central Line. I work In Woodford Bridge. Where are you in London?
Welcome to the forum! It’s a good place for information and to find out if people are facing the same challenges and how they go about dealing with them.
I look forward to hearing from you.
ShevvySeptember 25, 2016 at 5:43 pm #138381Reply To: Limb Girdle MD – anyone out there with it?
A good win for us today. We hammered the Hammers! You mention that you struggle with where you live, what sort of challenges do you face? Do you find going out for a drink or meal a difficult? What changes do you think could be implemented to lessen the any obstacles?
ShevvySeptember 25, 2016 at 5:33 pm #138380Reply To: Tips for low seats etc
I’m looking in to your links for padded raised toilet seats – thank you.
Do you have any experience of using such aids or do you know of anyone who has please? I’d welcome any feedback, such as, which seat is the easiest to fit on public toilets, which is the most secure when fitted, which is the easiest to arise from etc… I am happy to try different seats out until I find one that is suitable.
I’m sorry if I seem a little obsessed with this issue!
ShevvySeptember 18, 2016 at 7:19 pm #137979Reply To: Limb Girdle MD – anyone out there with it?
Thank you for replying. Brentwood is pretty close. I often drive through Brentwood. I sometimes use the Care Co shop which is fairly close to the police station. I sometimes also go to the Black Horse but haven’t been there for quite a long time.
If you don’t mind me asking, are you under a hospital to monitor your MD, if so, which one? What sort of challenges do you find with your LGMD?
Look forward to hearing from you.
ShevvySeptember 18, 2016 at 7:09 pm #137978Reply To: Limb Girdle MD – anyone out there with it?
Hi, Although I think I have heard of your type, I’m not really familiar with it, sorry! There are so many different types. What similarities are there? What type of challenges do you come accross? Thank you for replying.
ShevvySeptember 12, 2016 at 9:27 pm #137676Reply To: New Member – Limb Girdle Muscular Dystrophy Type 2D
Hi, how are you? I’m also new to posting on the forum. I have a form of Limb Girdle and am currently undergoing diagnosis. I had a muscle biopsy seven years ago and will now be having a skin biopsy to aid diagnosis. I seem to have a very rare type – typical! It’s great that you have completed university. What will you do with your degree? How does your LGMD affect you? Hope to hear from you.
ShevvySeptember 12, 2016 at 9:13 pm #137675Reply To: Hello… New to group
Hi, I have a type of Limb Girdle MD and have used a mobility scooter for the last three years as my ability to walk has decreased. I have a hoist in my car and have enough mobility to use it. It does make a difference to me and allows me to go out. I have other worries such as accessible public toilets. I would recommend getting a scooter or powered wheelchair. You will be able to be independent.
ShevvySeptember 12, 2016 at 7:46 pm #137673Reply To: Limb Girdle MD – anyone out there with it?
Hi, thank you for your reply. The forum is a great idea to share thoughts, challenges and experiences. I shall return quite frequently to check it out as I think it can be quite e isolating when you don’t know anyone with LGMD or any form of MD. My friends are all able bodied and do not face the same challenges as I do now, especially as the condition progresses.
ShevvySeptember 12, 2016 at 7:37 pm #137672Reply To: Limb Girdle MD – anyone out there with it?
Hi, good to hear from you. You’ll be pleased to know that I am not a West Ham fan – Southampton is my team. Not going well at the moment though, I’m sorry to say – now footy is a whole new post!
How do you manage with your LGMD? Do either of you find it limiting in, for example, going out for a drink or meal? If so how do you deal with any difficulties?
I would love to hear back from you.
ShevvySeptember 11, 2016 at 5:42 pm #137613Reply To: Tips for low seats etc
Thank you so much for your reply. I have bookmarked both those padded raised toilet seats to look at later. It could be a solution, I hope, and lessen my anxiety.
As you say, raised toilet seats are not thought about at all in public places. This lack of suitable facilities for myself and others makes going out for a drink or a meal extremely difficult. Many places offer disabled facilities but that just means more space (than I necessarily need) and a low toilet seat for wheelchair transfer, which is useless to me and others.
As my condition progresses sit to stand is becoming a real issue. I now sit in my scooter if I do go out for a meal or drink, which is rare due to reasons above. But at least this is possible.
As I say many thanks for your reply. I feel more hopeful. Thank you.
ShevvySeptember 9, 2016 at 11:08 pm #137591Reply To: Tips for low seats etc
Yes, I agree re. toilet seats. I have Limb Girdle MD and am fine with seats which are high enough but toilet seats are usually low. It’s a real difficulty for me. At home I have a raised seat with arms but you don’t find this in public places. How can you go out for a drink or meal if you can’t access the toilet seat? I don’t need a huge amount of space but I would like a raised toilet seat. I find it very depressing that disabled toilets have a low seat made for transfer to a wheelchair but are not suitable for those who, for example, use a mobility scooter. I’m so pleased you have, If you excuse the pun, raised this! Can anyone help please?