sneakyandzip
New member
- Joined
- Jul 18, 2009
- Messages
- 3
- Reason
- Loved one DX
- Country
- NZ
- State
- Auckland
- City
- Auckland
Hi there,
I'm a sixteen-year-old girl from New Zealand, and my mother was sort of half-heartedly diagnosed with PMA sometime in the past two years. She has been suffering symptoms for roughly 3+ years, namely the foot drop, weakness, cramping, etc. She knows in far more detail when things started happening and what, it's all been a blur for me. Anyway. It has progressed quite far, and she is completely wheelchair-bound now. She has a mobility scooter at school (she's a secondary-school teacher) and a motorised, smaller "Go-Chair" at home, both of which are blessings considering that they allow her to continue working full-time. She uses transfer boards and we've got a lift installed so that her chair can go in and out of the house.
Her legs are pretty severely atrophied, calves and thighs. She cannot stand. The atrophy has spread to her hands and she now has flat palms and you can see there is little or no muscle between the fingers, meaning she has limited dexterity now, and struggles with fine-motor skills.
Basically I wanted to talk here because reading about these conditions online can be so terrifying, and they are couched in such clinical, brutal terms. I have had very few conversations about the details of Mum's particular illness with my parents, I actually really just don't want to bring it up, as what I can see tells me enough.
But I have a lot of questions. I have a lot of fear and dread about what is yet to happen. Part of me wants to escape it, because it's devastating to see my mother deteriorate. I also have selfish questions which are hard to find the answers to, surrounding the hereditary nature of these conditions. Can you tell me some more about that?
Also I've noticed that if she coughs it has become weak-sounding, and that strikes me as being related to the PMA as it's fairly recent. Could I get more information on that? I'm terrified that it means it's spreading to her throat.
So yeah . . . I'm glad to have found some people who actually know what they're talking about here. I feel that I've painted a picture of my mother as a weak victim but she is a trooper and her incredible bravery and strength is something I have to mention. My dad is a hero, he is so devoted and loving and he takes care of Mum amazingly. So I have a lot to be grateful for. I see that.
Thank you, and I look forward to your responses,
Katie.
I'm a sixteen-year-old girl from New Zealand, and my mother was sort of half-heartedly diagnosed with PMA sometime in the past two years. She has been suffering symptoms for roughly 3+ years, namely the foot drop, weakness, cramping, etc. She knows in far more detail when things started happening and what, it's all been a blur for me. Anyway. It has progressed quite far, and she is completely wheelchair-bound now. She has a mobility scooter at school (she's a secondary-school teacher) and a motorised, smaller "Go-Chair" at home, both of which are blessings considering that they allow her to continue working full-time. She uses transfer boards and we've got a lift installed so that her chair can go in and out of the house.
Her legs are pretty severely atrophied, calves and thighs. She cannot stand. The atrophy has spread to her hands and she now has flat palms and you can see there is little or no muscle between the fingers, meaning she has limited dexterity now, and struggles with fine-motor skills.
Basically I wanted to talk here because reading about these conditions online can be so terrifying, and they are couched in such clinical, brutal terms. I have had very few conversations about the details of Mum's particular illness with my parents, I actually really just don't want to bring it up, as what I can see tells me enough.
But I have a lot of questions. I have a lot of fear and dread about what is yet to happen. Part of me wants to escape it, because it's devastating to see my mother deteriorate. I also have selfish questions which are hard to find the answers to, surrounding the hereditary nature of these conditions. Can you tell me some more about that?
Also I've noticed that if she coughs it has become weak-sounding, and that strikes me as being related to the PMA as it's fairly recent. Could I get more information on that? I'm terrified that it means it's spreading to her throat.
So yeah . . . I'm glad to have found some people who actually know what they're talking about here. I feel that I've painted a picture of my mother as a weak victim but she is a trooper and her incredible bravery and strength is something I have to mention. My dad is a hero, he is so devoted and loving and he takes care of Mum amazingly. So I have a lot to be grateful for. I see that.
Thank you, and I look forward to your responses,
Katie.