Hi I’m new on here im 30 with a 7 yr old little girl and a very supportive partner, I got diagonesed with spino cerebellar ataxia type 2 when I was 27 which was very hard coming to terms with and I still suffer with depression. I used to be able to take my daughter to school, dance lessons, day trips out and I used to be able to work and go out with friends or go on shopping trips. I have noticed when I’m tired my ataxia gets worse is the case for other people or am I alone ?
Definitely not alone I too get worse when tired or over do it.
So many of us begin our sentences with " I used to be able to..." You are not alone in experiencing a dramatic life change. No matter what our age, it is frustrating and depressing to see your abilities shrink before your eyes. Our joys are taken from us. Stupid disease!
I have gotten to the point that I don 't want people to see me lurching and staggering around, being totally clumsy, coughing and slightly slurring my speech. I have cut back on my driving, shopping, walking (well, it is the snowiest winter ever in Boston!), etc. But, I have noticed that people are kind and move quickly to help me carry things, hold doors, take my arm,, volunteer to pick me up and so on. The good comes out in many folks when they see another struggling.
I wish for you a good friend who will go with you to your daughter's dancing lessons, take you shopping , take you for a ride and just be there for you to talk with .
umigal
I have a very supportive fiance
Umigal said:
So many of us begin our sentences with " I used to be able to…" You are not alone in experiencing a dramatic life change. No matter what our age, it is frustrating and depressing to see your abilities shrink before your eyes. Our joys are taken from us. Stupid disease!
I have gotten to the point that I don 't want people to see me lurching and staggering around, being totally clumsy, coughing and slightly slurring my speech. I have cut back on my driving, shopping, walking (well, it is the snowiest winter ever in Boston!), etc. But, I have noticed that people are kind and move quickly to help me carry things, hold doors, take my arm, volunteer to pick me up and so on. The good comes out in many folks when they see another struggling.
I wish for you a good friend who will go with you to your daughter’s dancing lessons, take you shopping , take you for a ride and just be there for you to talk with .
umigal
Dear Betty, First of all a HUGE welcome to this site. You'll find wonderful people on here for support and understanding! Yes, tiredness does make ataxia worse! I was diagnosed with Sporadic Cerebellar Ataxia eleven years ago (unknown cause/symptoms 24/7). I try to pace myself when I do things, For instance, if cleaning the house, I'll do a bit and then rest a bit! I also take an antidepressant (originally started for a different reason, twenty years ago) which helps me (it's NOT a happy pill, just balances the chemicals in your brain) think more clearly and feel more at ease, especially with ataxia! I also exercise for strength and balance, as well as stretch my tight muscles each day. I eat as healthy as possible (nothing processed, little sugar or dairy), which helps me. My neurologist tells me to be as active as possible (easy for him...,ha!). I try to be, although it's difficult and frustrating! Ataxia is a constant balancing act, especially with a young child (mine are grown and out of the home, although I do have three precious young grandchildren). You are not alone in your journey! My best to you..., Hugs, Rose ;o)
I am going through the same thing for about 14 years. I also had an active life. I was just diagnosed with the same (type 3). I knew it was spinocerebellar ataxia, I always knew because it is hereditary, my grandfather, father and aunt all had this and all passed away in their mid 40's, except my father who was 46. I am 47. Thank GOD! I pray that I will live a long life. I am keeping up with the latest medical research.
Hi Betty!
I am 29 (will be 30 next month!) and I was diagnosed with SCA3 about 4-5 years ago. My fiance is very supportive of me, as well. We do not have any children at the moment, but will be planning to have at least one in the future. I know that it will be difficult to do anything on my own with a child, but we will make it work. I have been working on strengthening my muscles and my balance; which is helping me overall. (My goal is to walk down the aisle with no "problems" and to be able to "dance" the night away at my wedding in September!) I wish you the very best and know that you are not alone with your struggles.
~Jeannette
Im also planning to marry my fiancé and would love to walk up the Isle I wish u all the luck in the world for you to carry out this wish x Netta4885 said:
Hi Betty!
I am 29 (will be 30 next month!) and I was diagnosed with SCA3 about 4-5 years ago. My fiance is very supportive of me, as well. We do not have any children at the moment, but will be planning to have at least one in the future. I know that it will be difficult to do anything on my own with a child, but we will make it work. I have been working on strengthening my muscles and my balance; which is helping me overall. (My goal is to walk down the aisle with no "problems" and to be able to "dance" the night away at my wedding in September!) I wish you the very best and know that you are not alone with your struggles.
~Jeannette
I wish you a wonderful wedding and be proud of who you were and of who you are...
AML Ozzy
I am new here, too, Betty. My husband was just diagnosed with SCA 2 and we have three children. Welcome. I am sorry to hear about your condition but happy for you that you have a supportive partner. I think that's worth a lot. I know it's really hard physically and psychologically. This is a great place for information and support I have found!
Hey there Betty. Yes, I think fatigue, darkness, crowds and anxiety make ataxia worse.I was recently at my great niece's coming out party which was full of darkness, loud music, dancing and very crowded, and I thought I would die, faint or fall None happened. Happy you have a supportive partner and I wish you a great wedding. My spouse is correct but not supportive at all. He seems to think I can actually get out of this mess if only I exercised more. He refuses to believe it can get worse and makes plans for the future regardless of anything. Be strong. This requires a village of support. (Not that I have one at all.....)
Hi neta I’m so sorry to hear your spouse is not suportive of you having this horrible disabilty if you ever need to chat im here
neta said:
Hey there Betty. Yes, I think fatigue, darkness, crowds and anxiety make ataxia worse.I was recently at my great niece’s coming out party which was full of darkness, loud music, dancing and very crowded, and I thought I would die, faint or fall None happened. Happy you have a supportive partner and I wish you a great wedding. My spouse is correct but not supportive at all. He seems to think I can actually get out of this mess if only I exercised more. He refuses to believe it can get worse and makes plans for the future regardless of anything. Be strong. This requires a village of support. (Not that I have one at all…)
I'm sorry your husband isn't supportive. Maybe he needs to do some research on ataxias and hopefully he will realize that ataxias are incurable and progress at whatever rate it wants. Just keep being as active as you can and try to keep positive about all this. And when you are frustrated and don't know what to do, there is a ton of people on this website that understand and will support you.
neta said:
Hey there Betty. Yes, I think fatigue, darkness, crowds and anxiety make ataxia worse.I was recently at my great niece's coming out party which was full of darkness, loud music, dancing and very crowded, and I thought I would die, faint or fall None happened. Happy you have a supportive partner and I wish you a great wedding. My spouse is correct but not supportive at all. He seems to think I can actually get out of this mess if only I exercised more. He refuses to believe it can get worse and makes plans for the future regardless of anything. Be strong. This requires a village of support. (Not that I have one at all.....)
Hey Kay and thanks. I think he is in denial and would rather believe that more exercise and hard work will improve things. He refuses (to my knowledge) to read about ataxia even suggesting it is ''all in my head" He is very correct towards me but forget about a hug or a good word. He comes from a family where either you have Stage 4 cancer, a major heart attack or you r fine. There is no in between just laziness. I am not sure how to deal with this. There is one disabled person in his wider family (not CA related at all) and she is either pitied or looked upon as a pathetic creature--half human. She never married or had kids or was in a relationship and everyone thinks that's just fine and normal.
Kay said:
I'm sorry your husband isn't supportive. Maybe he needs to do some research on ataxias and hopefully he will realize that ataxias are incurable and progress at whatever rate it wants. Just keep being as active as you can and try to keep positive about all this. And when you are frustrated and don't know what to do, there is a ton of people on this website that understand and will support you.
neta said:Hey there Betty. Yes, I think fatigue, darkness, crowds and anxiety make ataxia worse.I was recently at my great niece's coming out party which was full of darkness, loud music, dancing and very crowded, and I thought I would die, faint or fall None happened. Happy you have a supportive partner and I wish you a great wedding. My spouse is correct but not supportive at all. He seems to think I can actually get out of this mess if only I exercised more. He refuses to believe it can get worse and makes plans for the future regardless of anything. Be strong. This requires a village of support. (Not that I have one at all.....)
neta said:
Saving…
Dear Neta, Even if your husband is not supportive, for what it's worth, you are NOT alone in your journey! Keep commenting on this site, as you do have a "village" of support and understanding here! We know better about ataxia, even if loved ones don't acknowledge or understand. Sometimes I think it's easier for them to be in denial, as they don't like to seeing someone they love having to deal with this. Could (?) be the case with your husband! My husband and family are very supportive, although they can't truly understand what's it's like to deal with ataxia, as they don't (thankfully) have it. They can only go by what I express at times. My parents are in their 80's, so I don't talk about it with them. Don't want to cause them worry! My best to you always..., ;o)
Your husband is so close-minded I feel sorry for him. There are thousands of health issues that are not life threatening. I hope he realizes that people aren't being lazy. If I were you I'd be spending a lot of time on this website where you have the support.
neta said:
Hey Kay and thanks. I think he is in denial and would rather believe that more exercise and hard work will improve things. He refuses (to my knowledge) to read about ataxia even suggesting it is ''all in my head" He is very correct towards me but forget about a hug or a good word. He comes from a family where either you have Stage 4 cancer, a major heart attack or you r fine. There is no in between just laziness. I am not sure how to deal with this. There is one disabled person in his wider family (not CA related at all) and she is either pitied or looked upon as a pathetic creature--half human. She never married or had kids or was in a relationship and everyone thinks that's just fine and normal.
Kay said:
I'm sorry your husband isn't supportive. Maybe he needs to do some research on ataxias and hopefully he will realize that ataxias are incurable and progress at whatever rate it wants. Just keep being as active as you can and try to keep positive about all this. And when you are frustrated and don't know what to do, there is a ton of people on this website that understand and will support you.
neta said:Hey there Betty. Yes, I think fatigue, darkness, crowds and anxiety make ataxia worse.I was recently at my great niece's coming out party which was full of darkness, loud music, dancing and very crowded, and I thought I would die, faint or fall None happened. Happy you have a supportive partner and I wish you a great wedding. My spouse is correct but not supportive at all. He seems to think I can actually get out of this mess if only I exercised more. He refuses to believe it can get worse and makes plans for the future regardless of anything. Be strong. This requires a village of support. (Not that I have one at all.....)
Thanks Rose for your kind words. I think we broached this subject once. Strange how I dont find my family members particularly supportive. Yes, maybe they are too freaked out.What an odd reaction!! I should not complain because I am not profoundly affected although I, of course, think-feel that I am. Anyway I think my husband's main complaint is that I am no longer working, just sitting around. I think he finds this awful. Like most people he's unaware of ataxia and what it does. How elementary its damage is-can be.... walking, talking, writing.... I mean that wipes out or diminishes like 90% of human activity!! I feel alone because I have never met another Ataxian like me, neither in NYC nor anywhere for that matter. Each visit to my HMO requires lengthy, often strange looks. Its nice to know that Ataxians support each other, but we remain anonymous. However useful this site, we are sadly strangers. Despite it all,I wish you just the best and thanks for your comments. N
rose said:
Dear Neta, Even if your husband is not supportive, for what it's worth, you are NOT alone in your journey! Keep commenting on this site, as you do have a "village" of support and understanding here! We know better about ataxia, even if loved ones don't acknowledge or understand. Sometimes I think it's easier for them to be in denial, as they don't like to seeing someone they love having to deal with this. Could (?) be the case with your husband! My husband and family are very supportive, although they can't truly understand what's it's like to deal with ataxia, as they don't (thankfully) have it. They can only go by what I express at times. My parents are in their 80's, so I don't talk about it with them. Don't want to cause them worry! My best to you always..., ;o)
Thanks Kay again 4 your words. I think my husband is close minded despite all his sophistication and fancy degrees (humanities) from Princeton and Yale. Alot of this, I think, has to do with his father who died at age 94 and believed in never giving in to anything. He took pride, (the father) for example, that he once walked up a steep hill with a broken leg . (Had no idea it was broken.)
My mother in law is younger (85) and a tough cookie too. Complaining or asking help of these folks is just useless. It reminds me of the saying "one never knows where help will come from." I once met a simple cleaning woman from the Philippines who told me that she used all her extra money to help buy her mom a house, and send her niece and nephew to medical school. A moral giant in my living room!
Kay said:
Your husband is so close-minded I feel sorry for him. There are thousands of health issues that are not life threatening. I hope he realizes that people aren't being lazy. If I were you I'd be spending a lot of time on this website where you have the support.
neta said:
Hey Kay and thanks. I think he is in denial and would rather believe that more exercise and hard work will improve things. He refuses (to my knowledge) to read about ataxia even suggesting it is ''all in my head" He is very correct towards me but forget about a hug or a good word. He comes from a family where either you have Stage 4 cancer, a major heart attack or you r fine. There is no in between just laziness. I am not sure how to deal with this. There is one disabled person in his wider family (not CA related at all) and she is either pitied or looked upon as a pathetic creature--half human. She never married or had kids or was in a relationship and everyone thinks that's just fine and normal.
Kay said:
I'm sorry your husband isn't supportive. Maybe he needs to do some research on ataxias and hopefully he will realize that ataxias are incurable and progress at whatever rate it wants. Just keep being as active as you can and try to keep positive about all this. And when you are frustrated and don't know what to do, there is a ton of people on this website that understand and will support you.
neta said:Hey there Betty. Yes, I think fatigue, darkness, crowds and anxiety make ataxia worse.I was recently at my great niece's coming out party which was full of darkness, loud music, dancing and very crowded, and I thought I would die, faint or fall None happened. Happy you have a supportive partner and I wish you a great wedding. My spouse is correct but not supportive at all. He seems to think I can actually get out of this mess if only I exercised more. He refuses to believe it can get worse and makes plans for the future regardless of anything. Be strong. This requires a village of support. (Not that I have one at all.....)
Hi Betty,
Welcome to LWA. I hope you find the site as helpful as I have and I'm sure many do. The folk on this site are some of the nicest you are likely to encounter and usually bring with them lots of useful knowledge regarding ataxia and health in general.
You are certainly not alone in feeling that tiredness makes ataxia seem worse! Tiredness, fatigue (there is, arguably, a difference), stress and feeling that we have 'over done it' can all make ataxia much worse.
Unfortuneately, there are no easy answers when it comes to tiredness or fatigue and what may help one person may be of no help to another. Maybe a talk with your GP about this issue could be useful. One of the worst things I find about how quickly I can get tired, fatigued, stressed or even frustrated is explaining it to others! I have found the 'Spoons Theory' usefull for explaining how I feel to others; http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/. That is a long story and a bit extreme but usefull non the less.
I truly hope you can find a way to successfully tackle your tiredness problems. Kindest regards.
BTW: Weddings! There must be something in the air. Congrats and good luck to those of you about to embark on that particular wonderful adventure. :)