Wow People you all surprised me when you replied back. Thank You all so much. I have to apologize I was not taking into concideration that we all have different types of busy lives. Don't know why i was not thinking!! SORRY EVERYONE!!!
So anyway I will say one thing I do enjoy everyone who writes. I live 45 min away from my only child who is raising her fam. w/husband so I see them maybe twice out of the month because like many of you with children, they are so busy. But still I do miss them.
Now I have quest. for those young parents trying to raise a family and you are deling with Ataxia. How do yo deal with this and how are your children dealing.
Another question for all. Do you find doing housework to be challenging for you?
With just me and my husband I vacuum once a month, mop, and dust. Everyone thinks my house is spotless when they walk in. Boy are they wrong......... I guess I have them fooled!!! He He
It helps me to have the type husband I have as he has always picks up after himself. He has taken over the washing of clothes as they are done down in the basement. I do all folding and putting them away.
I am thinking of having someone come every four months to move furniture and complete work hard for me to handle.
I am not a big shopper or have never been one to be out on the town so I guess if I spend some money having someone help a bit. Why Not?
I have hobbies I enjoy. My problem is I have a Craft room in the basement doing silk floral decor. Unable to go down by myself (people afraid I mayfall). I am so fortunate to have people who care about these things. I love my craft room. It is so organized and I have everything right at my fingertips. Just have to go down when someone is here. Hey! Next month I will b getting my push button safety button for when I am home all day alone. I know I will feel much more at ease. Who has one? What do you think of them? Are you happy with it? I only signed up for a year to see what I think. Please give me your opinion on this gadget.
Well people one thing I will say. If I could write to each individual it would be so nice to get to know each other better. please if our time zones are different write me ans I will do my best to get back to each of you.
Have a great day guys and go out and show people that Ataxia may follow us all over but we refuse to let it overpower our life. I love my body and the life God has chose for me.
We could not be more different. I have what drs. call mild ataxia from an auto-immune source, and get some sort of treatment (which hasnt really worked in my opinion). But I don't know what they mean by mild.I feel pretty shakey and as a result l do very little and have the world's worst attitude. I have a family who is not really interested in what they call "Mom's Complaint's". My husband also thinks I am bullshitting him and am just lazy and crazy (because I wearboots even in summer). He has said, "we need a housekeeper," a diss I felt. Just yesterday he told me, "I wish I had your life" because I no longer work. Maybe everyone is in denial. I've been told by drs. most of my "problems" are psychological. I feel like I am being punished because I try really hard, work hard (excercising) and look well. As a result, I feel God has cursed me and I am worried ninety percent of the time. N
I have 'background' cleaner every four weeks - she only comes for 1-hour and very reasonable price for one hour cleaning - I cant think of any better way of spending the money. I vacuum in the centre of rooms once or twice a week and the cleaner does round the edges, ceilings, lights, mirrors, inside windows etc. Everything sparkles when she has been.
My husband is very untidy so I have to put everything away before the cleaner arrives which takes about an hour to do! However, our home does have a relaxed feel about it and I don't worry about it too much [just a little].
We each do our own washing and I do towels and bed linen too.
The main thing is to be happy .. I know that ataxia is often considered as a psychological problem but we know different dont we!
Yes,I have difficulty mopping the floor and getting down low and cleaning cabinets. … I have a double knee replace ment and ataxia. Any suggestions? I also did not consider time zones . My appologies as well. People have been answering me now and I am learning how to master the site.
First of all, I live by myself in a 1 bedroom apt. I do alot of voluteering for ohers and when I'm home I just want to relax so my place is more or less an organized mess. Luckily I have a homecare worker visit me once every 2 weeks. Now about your craft room, have you thought about getting one of those automatic stair-climbing chairs? I don't know the cost or whether you have enough room in your basement, but its an idea so you can go down to the craft room even when you're by yourself.
My suggestions is first of all you need to find a good neurologist then, talk to hubby. It sounds like
He is bitter and stressed because he has to be the back none for the family … Talk to him, question…how
long have you guys been married!?! It all starts with family supports husband pushese to do more, throw I sometimes get mad , I do like that he does that …
Hi Vickie, You sound as though you have a really positive attitude...,how refreshing! Ataxia is very frustrating and challenging, but life is short and I try not to waste time lamenting about it. I will continue to exercise for strength and balance, as well as eat healthy, as that's good for general health. My two children are grown now, and I have two young grandchildren I adore (I'm 59 years young, and was diagnosed 10 years ago with ataxia). I also have two grown lovely step-daughters from my second marriage (7 years). My first husband (dad to our children) died 17 years ago, when the kids were 12 and 14 years old. How wonderful you have a craft room, I'm envious...,ha! I do crafts on my dining room table. as I like to draw, paint (with acrylics) and make greeting cards. Yes, house work is difficult, as I would do a lot more of everything if I didn't have ataxia. I think you're idea to have someone in occasionally to clean is a splendid idea! I've tossed that idea around myself! I do laundry, as our laundry room is on the main floor. It's also good exercise for me to fold clothes, buttoning the top button of my husbands work shirts, not so much...,ha! But, I'm retired (husband still works), don't move fast, so I have the time to work on those buttons! My husband is an angel, and will do anything I ask to help! Yes, although I don't have one, I think an alert button that you wear is an excellent idea! Better safe than sorry for sure! Well, I have to get ready now, as I have an MRI today. Chat again later...,;o)
Done all that displaymom.. his heart is in the right place and that's what counts.. just isn't a tidy person. It really doesn't matter that much. He does try.
You know what Neta? Sounds to me that you need your husband to open his eyes to reality. He should be able t tell that you are going through a rough time and step it up. Neta attitude is a choice we make for ourselves. If we want to be in a positive mood we can choose to do so on our own. it is all what a person chooses for themselves. Neta I could be wrong but the little bit you wrote here tells me that your family is not supportive with you on this. Of course this is gong to give off negative feelings to you. Well Guess what Neta............give them your positive side and start showing them that you are in control of your own life. If they choose not to show you a little help just do your best at what you can do and leave it at that. Because Neta you deserve to be helped during this time in your life. Do what you can and the rest should be up to those who are more able. If they were in your situation how would they expect to be treated? They need to understand that you did not ask for this situation to happen.
Good Luck Neta..........My heart is hurting for you and I hope your family steps up and starts looking at this picture in a different way. Write me back any time. I want to know all is ok for you. Truly!
neta said:
Dear Vicky,
We could not be more different. I have what drs. call mild ataxia from an auto-immune source, and get some sort of treatment (which hasnt really worked in my opinion). But I don't know what they mean by mild.I feel pretty shakey and as a result l do very little and have the world's worst attitude. I have a family who is not really interested in what they call "Mom's Complaint's". My husband also thinks I am bullshitting him and am just lazy and crazy (because I wearboots even in summer). He has said, "we need a housekeeper," a diss I felt. Just yesterday he told me, "I wish I had your life" because I no longer work. Maybe everyone is in denial. I've been told by drs. most of my "problems" are psychological. I feel like I am being punished because I try really hard, work hard (excercising) and look well. As a result, I feel God has cursed me and I am worried ninety percent of the time. N
Thanks for that idea Michael. That sure sounds like it might give me a chance to continue with some projects I reallyu need to finish. I am going to check into that chair. Never hurts to check things out. Again thanks for a great idea.
Michael Geilen said:
First of all, I live by myself in a 1 bedroom apt. I do alot of voluteering for ohers and when I'm home I just want to relax so my place is more or less an organized mess. Luckily I have a homecare worker visit me once every 2 weeks. Now about your craft room, have you thought about getting one of those automatic stair-climbing chairs? I don't know the cost or whether you have enough room in your basement, but its an idea so you can go down to the craft room even when you're by yourself.
So sorry to hear that your family is not very supportive of your condition. This is real and not in our minds. Has your husband ever gone with you to your doctors appointments? If not, he should and have the doctors explain "mom's condition" to him and that it is a real thing. I have had my husband go with me on many appointments and he has gotten a real education himself about ataxia. Is your doctor supportive? That is a must otherwise find one who really knows the condition. It has taken me 2 years to find doctors who know exactly what I'm going through. Just found a new doctor who told me his has many patients like me. I almost started crying. This doctor is so informed and educated about ataxia and is constantly working with researchers about ataxia. Don't know where you live but he is in downtown Chicago. Let me know if you would like his name.
neta said:
Dear Vicky,
We could not be more different. I have what drs. call mild ataxia from an auto-immune source, and get some sort of (which hasnt really worked in my opinion). But I don't know what they mean by mild.I feel pretty shakey and as a result l do very little and have the world's worst attitude. I have a family who is not really interested in what they call "Mom's Complaint's". My husband also thinks I am bullshitting him and am just lazy and crazy (because I wearboots even in summer). He has said, "we need a housekeeper," a diss I felt. Just yesterday he told me, "I wish I had your life" because I no longer work. Maybe everyone is in denial. I've been told by drs. most of my "problems" are psychological. I feel like I am being punished because I try really hard, work hard (excercising) and look well. As a result, I feel God has cursed me and I am worried ninety percent of the time. N
Hello Vicki, I have one of those buttons. Mine is wore on my wrist like a watch. At first I didn't like it because I had to press the button on the main dovalaky every morning before 11am.. I have put it next to my bed so I don't forget to push the button to let them know that I'm okay. I think they are a wonderful thing. I feel much safer now .Last year I was sick with pneumonia ( I didn't know how ill I was) I fell over and I was too weak to get up. Luck would have it, my son showed up and took me to hospital. I could have died there on the floor ,if not him. That is why I have the button.
Yes, my husband has gone with me to the dr, I see the head of neurology at a big hospital, and have had this diagnosis confirmed by a prof of neurology in NYC. The last meeting (hubby attended; this is a second marriage) disintegrated into a talk about diet and exercise, secondary topics. It's a double edged sword because his "tough love" approach (his dad is 92 and weathered cancer and various shit) gets me to do more and carry on. My kids (grown)are in la-la land and, with the exception of my eldest daughter, think I should go to a spa to chill out.. Maybe hubby knows more than he let's on. Here's the take on me: I have "mild" ataxia but it get magnified ten fold because of my negative attitude. Just recently, myattitude improved somewhat. But the mornings are hard for me, when I feel rather hopeless, I will be in NYC in July. I still have to deal with my parents. Dad is 91. Mom is 89. Both are in good health. Mom a drop less. Dad is sharp as a whip and sued (and won) 30 homeowners for negligence last year when he tripped on a broken sidewalk, they had been warned to fix, and needed surgery to fix his leg and hip..
aturtle2 said:
Neta
So sorry to hear that your family is not very supportive of your condition. This is real and not in our minds. Has your husband ever gone with you to your doctors appointments? If not, he should and have the doctors explain "mom's condition" to him and that it is a real thing. I have had my husband go with me on many appointments and he has gotten a real education himself about ataxia. Is your doctor supportive? That is a must otherwise find one who really knows the condition. It has taken me 2 years to find doctors who know exactly what I'm going through. Just found a new doctor who told me his has many patients like me. I almost started crying. This doctor is so informed and educated about ataxia and is constantly working with researchers about ataxia. Don't know where you live but he is in downtown Chicago. Let me know if you would like his name.
neta said:
Dear Vicky,
We could not be more different. I have what drs. call mild ataxia from an auto-immune source, and get some sort of (which hasnt really worked in my opinion). But I don't know what they mean by mild.I feel pretty shakey and as a result l do very little and have the world's worst attitude. I have a family who is not really interested in what they call "Mom's Complaint's". My husband also thinks I am bullshitting him and am just lazy and crazy (because I wearboots even in summer). He has said, "we need a housekeeper," a diss I felt. Just yesterday he told me, "I wish I had your life" because I no longer work. Maybe everyone is in denial. I've been told by drs. most of my "problems" are psychological. I feel like I am being punished because I try really hard, work hard (excercising) and look well. As a result, I feel God has cursed me and I am worried ninety percent of the time. N
I will write back to you shortly. I have an appointment I have to get to now. If you are in the USA,it is night time for you anyway. I am on the other side of the world, where it in 9 am.
Vickie Welsh said:
You know what Neta? Sounds to me that you need your husband to open his eyes to reality. He should be able t tell that you are going through a rough time and step it up. Neta attitude is a choice we make for ourselves. If we want to be in a positive mood we can choose to do so on our own. it is all what a person chooses for themselves. Neta I could be wrong but the little bit you wrote here tells me that your family is not supportive with you on this. Of course this is gong to give off negative feelings to you. Well Guess what Neta............give them your positive side and start showing them that you are in control of your own life. If they choose not to show you a little help just do your best at what you can do and leave it at that. Because Neta you deserve to be helped during this time in your life. Do what you can and the rest should be up to those who are more able. If they were in your situation how would they expect to be treated? They need to understand that you did not ask for this situation to happen.
Good Luck Neta..........My heart is hurting for you and I hope your family steps up and starts looking at this picture in a different way. Write me back any time. I want to know all is ok for you. Truly!
neta said:
Dear Vicky,
We could not be more different. I have what drs. call mild ataxia from an auto-immune source, and get some sort of treatment (which hasnt really worked in my opinion). But I don't know what they mean by mild.I feel pretty shakey and as a result l do very little and have the world's worst attitude. I have a family who is not really interested in what they call "Mom's Complaint's". My husband also thinks I am bullshitting him and am just lazy and crazy (because I wearboots even in summer). He has said, "we need a housekeeper," a diss I felt. Just yesterday he told me, "I wish I had your life" because I no longer work. Maybe everyone is in denial. I've been told by drs. most of my "problems" are psychological. I feel like I am being punished because I try really hard, work hard (excercising) and look well. As a result, I feel God has cursed me and I am worried ninety percent of the time. N
As I wrote before, my case is seen as mild but I do not know what that means in "doctorese". To me, it's not mild unless I am seated. My shrink (I never saw one before all this and have limited faith in them altogether) who supposedly knows about ataxia, says that while he agrees (obviously) with the diagnosis, he claims my feelings of hopelessness and one-foot-in-the-grave are depression not ataxia. My lead dr, actually a prof of neurology, agrees. My second neurologist, says my "deficit" is minor. How does she say this when always feel as thought I might fall and people are always saying "what, what" to me?? (My voice has become less loud and sometimes I cannot create certain words.)
I am in a second marriage, with all that that entails, ( had a super-messy, raucous divorce frrom Hubby 1) and I don't think my current hubby necessarily signed up for this or deserves this. But he says he loves me and is doin.g his best (I think) to cope with this crazy illness which seems to have no end, beginning or middle. We are used to things like sore thoats and stomach flus at very worst heart attacks!!. He told me that next year, he will apply to teach at Johns Hopkin U which has an ataxia center. (He is an academic.) He "puts up" with all my antics but I don't think he realizes that this is forever and increasingly debilitating and I haven't really spelled that out. So far, we have had numerous disagreements about footwear to events like weddings--- about which I am super-fussy. And the fact that he cannot stand how I (sometimes) I appear. Allthis only heightens my anxieties that he doesn't quite get ataxia or that I, a young woman, have it---me of all people.. I am going with him to Italy next week, a trip which fills me with worries, although he says he will rent a car so I don't have to deal with the up and down from trains. From there, we are going on to NYC. I got over my phobia of escalators (which I never had till all this happened) so I am not freaked out by Delta's escalator-only egress at JFK airport. But seeing my parents fills me with dread. They are well and Dad is 91! and Mom,89! Sitting down makes me forget most of my problems but a certain stiffness appears if I sit too long.
As for my kids, they are grown up but don't really want any part of this. My older daughter has an autistic child (and three other healthy ones)so she has very little patience for me; my younger daughter is the mother of a five year old, pregnant, tired and busy working and getting a doctorate; my son's are not even in the orbit. They are busy with their own lives--although my older son, thinks I should check into Canyon Ranch, a spa in Florida. Maybe I should.
Neta
neta said:
Dear Vicky,
I will write back to you shortly. I have an appointment I have to get to now. If you are in the USA,it is night time for you anyway. I am on the other side of the world, where it in 9 am.
Vickie Welsh said:
You know what Neta? Sounds to me that you need your husband to open his eyes to reality. He should be able t tell that you are going through a rough time and step it up. Neta attitude is a choice we make for ourselves. If we want to be in a positive mood we can choose to do so on our own. it is all what a person chooses for themselves. Neta I could be wrong but the little bit you wrote here tells me that your family is not supportive with you on this. Of course this is gong to give off negative feelings to you. Well Guess what Neta............give them your positive side and start showing them that you are in control of your own life. If they choose not to show you a little help just do your best at what you can do and leave it at that. Because Neta you deserve to be helped during this time in your life. Do what you can and the rest should be up to those who are more able. If they were in your situation how would they expect to be treated? They need to understand that you did not ask for this situation to happen.
Good Luck Neta..........My heart is hurting for you and I hope your family steps up and starts looking at this picture in a different way. Write me back any time. I want to know all is ok for you. Truly!
neta said:
Dear Vicky,
We could not be more different. I have what drs. call mild ataxia from an auto-immune source, and get some sort of treatment (which hasnt really worked in my opinion). But I don't know what they mean by mild.I feel pretty shakey and as a result l do very little and have the world's worst attitude. I have a family who is not really interested in what they call "Mom's Complaint's". My husband also thinks I am bullshitting him and am just lazy and crazy (because I wearboots even in summer). He has said, "we need a housekeeper," a diss I felt. Just yesterday he told me, "I wish I had your life" because I no longer work. Maybe everyone is in denial. I've been told by drs. most of my "problems" are psychological. I feel like I am being punished because I try really hard, work hard (excercising) and look well. As a result, I feel God has cursed me and I am worried ninety percent of the time. N
I find these discussions very thought provoking.. just when I think I understand something, someone will give a different angle which makes a lot of sense.
My husband is working away today [normally works from home] and it surprises me how much I can do when he isn't here - he is always making me drinks and telling me to put my feet up plus the 'treats'. I need to lose weight or at least not put more on but who can resist chocolate, biscuits, icecreams etc when handed to you!
I find that if I focus on others more than myself, I feel more positive and in control.
My husband is 72 years old, has to keep working to maintain our modest lifestyle - he has to inject for his diabetes and has intermittent knee pain from floating cartilage. We look after each other.
We never expect anything from our three sons who have their own families and just make the most of anytime we have with the grandchildren.
If I feel unable to walk or even 'stand', I get on my computer and chat with friends.. some of whom I have never met.