Forum Replies Created
March 25, 2018 at 4:00 pm #155405Reply To: Working with LGMD
I also have LGMD. I am not in the medical profession but work in the teaching profession. I am a Teacher of the Deaf and now work three days, which is plenty. I no longer ‘teach’ due to my lack of mobility but assess children, which is an area of need in all schools. Children come to me as well. I hope that the medical profession can accommodate your needs — surely your profession should be able to do that for you and, one would hope, have more knowledge than other professions and workplaces.
I hope you get the support you need.
ShevvySeptember 7, 2017 at 10:54 pm #151570Reply To: Finding it hard to accept LGMD
I have an unspecified type of LGMD. I have yet to receive an actual diagnosis with my last muscle biopsy being in 2009. I suppose I have had LGMD for about 18yrs now. There has been a steady progression which has been hard to come to terms with more recently.
Please do feel free to reply about your struggles and if I can I will try to share strategies that work for me, There can be challenges both physically and mentally/emotionally.
Cheers for now
ShevvyMarch 18, 2017 at 6:22 pm #148490Reply To: Signs of Spring
Agreed, just getting outside without wrapping up. I’m a season ticket holder at the marvellous league 1 side Walsall FC, but when I go, I find myself wearing 2 pairs of trousers, 2 t-shirts and a hoodie + windproof jacket. Can’t wait till I can go in just my Jeans and Walsall top.
I don’t know when spring ends but the end of May, we always go down to Newquay for a family holiday, something else to look forwards to!
Yes, thank goodness the winter is over for another year. One of my friends is also a season ticket holder at the Saddlers! She is Walsall through and through. Not a good result today down South though. I am a Southampton FC fan but haven’t been to see them for a few years now. I have supported the Super Saints for many years. I have been to both St. Mary’s and the Dell. I aways look out for Walsall.
ShevvyFebruary 23, 2017 at 11:33 pm #147819Reply To: New type of chair, great for MD Sufferers.
Thanks for the link and to see it in action.
I have an unspecified type of Limb Girdle MD. Sit to stand is becoming much more difficult for me now. I have a rise recliner, which does the job for me for now. I now have to have all seats with arms on so I can use the arms to help raise me up.
ShevvyFebruary 23, 2017 at 11:22 pm #147818Reply To: LGMD 2B Experiences?
I have an unspecified type of Limb Girdle MD, which I believe is a rare type. I’m still hoping for a precise diagnosis. I have probably had LGMD for about 16 years now. It is in the last 4-5 years that it has really impacted upon me. I started to use a stairlift about 4 yrs ago. I have a stairlift at home and at work. I have used a mobility scooter for about 4 years now. I have limited walking and only with two sticks. I have a hoist in my car for lifting the scooter in and out of the car. Sit to stand is a challenge and I do find that this gets to me. I can only manage a step of 50mm in height now and with a grab rail. I am just starting to find that it is getting harder to raise my arms as my shoulder girdle becomes weaker. I seem to have little core strength.
I remember the times when I could go in to London on the underground and wander around. I can’t do that now. It’s hard sometimes to think about how my life was before and even in the early years of having LGMD and then think about it’s impact now. So it’s best to live in the present and not think too much about the past or future.
The forum is a good way to be in contact with people who face similar challenges as I really don’t think that my able bodied friends have any idea. I hope you find the forum useful.
ShevvyFebruary 7, 2017 at 10:48 pm #147358Reply To: new member with limb girdle dystrophy
I am in an electric power chair when out which raises me to standing. I have to use a bottle standing up but if I need to sit on a toilet I cant. I have a raising toilet seat at home but no where else has these. It makes it difficult going to see friends also so I dont go out as much as I would like to.
I know exactly what you mean about meeting up with friends. Like you I don’t go out as much as I used to or would like to. I use a mobility scooter when out. I have a hoist in my car which I can operate at the moment to get the scooter in and out. I have limited mobility and cannot walk very far. I have to use two sticks when walking. I also now cannot manage stairs. I use a stairlift at home and also have one at work for just a few steps. Sit to stand is another challenge for me. I have to sit in chairs with arms. If I do go out I sit in my scooter.
It can be quite isolating in that I don’t think my friends or work colleagues have any idea how difficult everyday tasks are and the impact the condition has upon me physically. It is good to have contact with someone like yourself who is going through exactly the same and completely understands.
I look forward to hearing from you again.
ShevvyFebruary 5, 2017 at 5:34 pm #147261Reply To: Limb Girdle MD – anyone out there with it?
My type of Limb Girdle is also unspecified at the moment. I use a mobility scooter when out and use two sticks at other times. Sit to stand is a big issue for me at the moment. If you din’t mind me asking what difficulties do you find you have?
ShevvyFebruary 5, 2017 at 5:28 pm #147259Reply To: new member with limb girdle dystrophy
I also have Limb Girdle MD. I know exactly how you feel as I am experiencing the same difficulties when out. It as if I have lost confidence in going out. Unfortunately disabled toilets can be too low for people with Limb Girdle MD as it progresses.
I am very happy to talk further with you on this forum about this and other topics.
I hope you find the forum helpful.
ShevvyNovember 11, 2016 at 11:23 pm #144294Reply To: Work
Hi, I have an unspecified type of Limb Girdle MD and work part time. I am a Teacher of the Deaf and work in a primary school with a provision for Deaf pupils. I no longer “teach” as such due to my reduced mobility. My role is now purely assessment and working upon data. The children come to me for assessment. Your place of work should make “reasonable adjustments” so that you cam continue working. I suppose it could be a change of role, as mine was. I was a class teacher for 15 years and a Teacher of the Deaf working with small groups for nine years before changing my role to purely assessment. I now work three days, which is plenty. I’m sure that your will find another suitable role within your profession. Do post any news.
ShevvyNovember 10, 2016 at 10:46 pm #144269Reply To: Just to talk
I have an unspecified type of Limb Girdle MD. Your post resonated so much with me as I have days when all’s okay and then days when it seems hard to cope with simple everyday tasks, which a few years ago were not troublesome. I think that you have to focus on the positives and what you are able to do. Also you have to stay in the present and not think about the past when life was more manageable nor think about the future as that’s unknown. Mind you that’s easier said than done! I can also empathise about the loneliness of having MD as none of my able bodied friends and work colleagues have any idea of what it is like to live with a progressive condition. You are not on your own in having good and bad days. Recently I have to admit that am finding it hard to cope mentally with things and have even lost confidence in going out socially. The forum is a good way to be in touch with others who understand what life is like. I have recently started to check it out fairly regularly. I can definitely identify with your post. Please do post again. In the meantime take care and focus on everything you can do.
ShevvyNovember 1, 2016 at 9:58 pm #143632Reply To: Writing a children's book about Muscular Dystrophy
What an excellent idea! For such young chidren I think the illustrations will be important- bright and colourful. Also the presentation will be important, such as a book with flaps???
Although I think that it needs to highlight some challenges such as mobility it is really important to highlight all the steps to make the child feel included and as much part of their class, when at school, as anyone else. It could have a theme such as getting a piece of equipment which enables the child to join in. A before and after scenario.
I think that it is vital to bring out positive messages and the fact that the child is included in all aspects of life – at home and school. Also that the child with MD just wants to lead a life like their friends and that they can with the help of specialist equipment, adults at home and school and their friends.
I look forward to hearing more about your venture.
ShevvyOctober 23, 2016 at 10:02 pm #143227Reply To: Hello from new poster with Myofibrillar Myopathy
I have an unspecified type of Limb Girdle MD. I work part time, which is plenty! I have limited mobility now. I walk with two sticks and use a mobility scooter, which is great. Like Marc, who posted after you, I do find, at times, life difficult. Sit to stand is my main struggle at the moment. However, I suppose you have to hang on to the positives and what you can do. The forum is good to interact with others who experience similar challenges.
ShevvyOctober 23, 2016 at 9:43 pm #143226Reply To: Limb Girdle MD – anyone out there with it?
Diagnosis can take a long time. I have an unspecified type at the moment and am still awaiting a diagnosis. House adaptations are necessary over the years. When we moved into our house many years ago I didn’t even know I had LGMD. We have had to make adaptations such as graduated steps to enter, grab rails and a stairlift. I assume that your daughter has an Educational Health Care Plan(EHCP) to ensure that her needs are met in school.
The forum is good for ideas and support. The MDUK website is also very useful for all sorts of information.
Hope any adaptations that you are making are going well.
ShevvyOctober 16, 2016 at 9:44 pm #142002Reply To: limb girdle 1b
Hi Jagger and everyone else,
I have an unspecified type of LGMD. It has been progressive over the years. I now use two walking sticks and a mobility scooter. I also use a stairlift now. I have a hoist in my car for the scooter, which means I can go out. Although going out is stressful and difficult due to access, seating and suitable facilities. I am a Teacher of the Deaf but my role is purely assessment now due to my reduced mobility. I work three days, which is plenty! I suppose that it is in the past three or four years that my condition has really impacted upon me.
Hope to hear from you soon.
ShevvyOctober 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.