With first introduction, my name is Elizabeth. My sister Sue has been diagnosed with anti-gads also know as stiff person syndrome. She has been ill since November and was diagnosed 2 months ago. she can not walk nor speak due to speech becoming slurred.She has no hope and I thought with others similar to her she would receive encouragement. She is currently at:
Suzette Murray
Mt. Ascutney Hospitol and health center.
289 County Road Windsor Vermont, 05089
The doctor has admitted that they have never worked with this and is trying their best to help, but there is no improvement which stress can cause this.I just thought maybe a card from strangers would somehow change her outlook. thankyou Elizabeth
Hello Elizabeth,
This is a wonderful idea. I am going to do this right now. I hope it will raise her spirits and when spirits are up, often, the health improves.
You are a very caring sister. Thoughts and prayers go to her and you and your family,
Take care . Please keep us posted.
Dear Elizabeth, I can tell you are are a wonderful, supportive sister! Suzzette sounds like she's dealing with so much! Sending cards is a great idea, and I will put one in the mail to her soon! My thoughts are with both of you...,;o)
hello Sue - there is a lot of support here and good advice - as with any of these sorts of illnesses find out as much as you can - I think there is an association with gluten sensitivity so please do look into this and especially the work of Prof M Hadjivassiliou in Sheffield. Stress always makes things worse so finding ways to deal with this condition and feel as well as possible is really important and will help a lot.
there is a lot of support out here for you and what a wonderful sister you have in Elizabeth - please dont forget that!
Do ask anything and come to chat too - surprising what a bit of social chat can do!!
Thankyou so much. Such a show of support. She is a microbiologist and understood what the diagram of her disease is-better than the nurses.) We lost mom to breast cancer this was the trigger for her disease. She is my older sister as I am the youngest living far from her-i feel helpless .thank you all for such a quick response with no hesitation-i feel through you she can be reached .I told her I found you all and will speak for her until she can.as of this morning her speach is sluggish and slurred-she can not walk or use her hands well.she is having pool therapy today and occupational therapy. I thankyou again with all of my heart . Elizabeth
Elizabeth - you are a wonderful sister - Sue will improve Im sure and as a microbiologist she has a head start in understanding this illness and the research - that is the way to go and find out and understand, please do look at the prof MH studies.
Elizabeth, this is what support groups are about: helping each other. I second Gill in saying that your sister will get better. We are all rooting for her. Go Suzy! Don’t give up. And you neither, Elizabeth,
Lots of hugs to both.
Dear Elizabeth, Your sister Suzzette is not alone in her journey. There are many people on this site with different types of ataxia for many reasons, some hereditary, some not, etc.(hope I said that properly, please forgive me if I didn't). The thing we all have in common is the symptoms we are dealing with in having ataxia. For instance, my speech is very slurred. Although I'm still able to walk, I use a quad cane (to prevent falling) and am going to get a rollator soon, as my balance is highly compromised. Motor skills are affected and sometimes I cough/choke. Anyway, were all here for each other for support and understanding. Please let your sister know were here for her too, as well as you..., ;o)
I do understand exactly what you have said.it is right; she carried the disease and moms passing just triggered it all at once. My concern with her is she was always strong-and now I believe her mind set is she has been weakened that she is not strong any longer I dont know how to convince her without the help of here- im so glad I found you all and know if she hears your stories of I can this just might bring it back to her. I hope I make sense! Thanks for reaching out
Has your sister got an email where she can be reached? If so, message me privately as I know someone who has SPS and it's possible they may be support for each other.
I really liked this idea so posted a card to Suzette at the above address when I went out this afternoon. It's coming from Australia so may take a week and a bit to show up.
Poppy,Sue has a facebook email which is ■■■■■■■■■■■■■■■■■■■■■■■■■■■■■ I have asked her husband to bring the computer with him to log on and show her she is not alone.i am also looking for a keyboard that might allow her to use a computer again.thankyou so much.
Lucy, I think a card from Australia would be just wonderful! As I explained to dad, sometimes being family doesnt make a difference. We tend to say we understand but logically we really dont.she needs re-enforcement from others that honestly do understand. I caint imagine being the only one in this facility that has this condition. I always would like to get her husband to participate on here because he needs much support. Thankyou
Lucy, I think a card from Australia would be just wonderful! As I explained to dad, sometimes being family doesnt make a difference. We tend to say we understand but logically we really dont.she needs re-enforcement from others that honestly do understand. I caint imagine being the only one in this facility that has this condition. I always would like to get her husband to participate on here because he needs much support. Thankyou
The people here are all very supportive and we all can understand although no two cases of ataxia appear to be the same. I have never heard of anybody with symptoms exactly the same as mine. We have many of the same symptoms but there are always differences. Things can almost always get better with understanding and support. You are a wonderful and supportive sister and sending a card is a marvelous idea so I will send one but it has to get there all the way from New Zealand so it may take a week and in the meantime I am thinking of you.
Hello Elizabeth, when our daughter Cassie was in the southern general for a couple of days, she was sharing a room with a lady who had stiff persons syndrome. I had never heard of this and she said it was really rare, so much so that her bloods had to be sent to America for a diagnosis. She lived on a farm in Aberdeen but travelled to Glasgow to the southern general every once in a while for treatment which she said is going well. It took her 2 years to get a diagnosis. Is your sister being treated? If not it may be an idea to contact the southern and ask how they are treating it. This was about a year and a half ago when Cassie was diagnosed with sca2. Hope this is helpful and keep up the fight.
