Hi… your post so resonnated with me. I too am new to this site, and found myself crying reading the posts from others, because they could have been mine. My symptoms really started getting bad in 2013. I was in my mid 40’s. My symptoms showed as lower back problems. After spending a year and half of 24/7/365 progressively debilitating pain I finally succumbed to spinal surgery. I thought that would take care of my problems. I was so wrong. About 6months later I started having serious problems in physical therapy. I couldn’t keep my balance, my legs wouldn’t move, my muscles tightened, I couldn’t write, and I had muscle cramps everyday. But the absolute worse was the brain fog I was having. People kept telling me what I was experiencing just meant I had to try harder in physical therapy. But after several more months of this, and my having to go back to using the Walker I was given right after surgery, I knew something was seriously wrong. After many trials I finally found a neurologist who put me on the right track. I had genetic testing and was diagnosed with SCA3. I now have a great neurologist, am on Sinemet and have to use a walker all the time. I’m now 51yo…and am quite angry, depressed and frustrated. This wasn’t part of my future plans. I had 44years with no indication that this was coming.
Hi - nice to meet (kind of) you.
It sounds like you had a really hard time getting to the root cause. I have hereditary ataxia and my mom has it so I had some inkling of it but we were always told she had a stroke so at first I figured my symptoms were totally unrelated…later once I had more symptoms I started asking questions and with the help of a neurologist we found out it was actually hereditary SCA - how my mother didnt notice that her sister (my aunt, whom I never met) had the same symptoms so what my mother had was not a stroke is beyond me. Not that it would have made a difference.
I think I first noticed a symptom when I used to take a train to work and saw other women who could easily walk through the train in high heels while I couldn’t do it even do it my tennis shoes - i noticed it but didnt pay too much attention. I really started paying attention when I had to “think” about what I was going to say and when I had a hard time running after my kid who was in football at the time and only 6. I knew something was wrong, but I was scared to go the doctor. I had the luxury of still being ok enough to choose not to see a doctor. Fast forward a couple of years and there was no more hiding.
I use a cane now anytime I leave the house (I hold on to furniture and walls at home) and although I need it, I HATE using it. I’m only 42 and I feel like I’m 85! And the foggy brain - don’t get me started! I used to do like 10 things at once and now I have to stop walking if I want to put my glasses on - I can’t just simply reach into my purse, get them out and put them on my face like everyone else seems to - it has to be a process…you know the old joke about not being able to chew gum and walk at the same time? I feel like that’s me half the time. Dont know if it happens to you…and ill be talking and say the wrong word…like I’ll say open when I mean close…i used to love reading but thanks to the Nystagmus from this condition reading more than a page or so makes me dizzy…i used to love writing (like actually writing like in a diary, but writing is way too hard now), I used to love dancing but of course that’s out the question… so I soooo understand your anger, depression and frustration- I had so many plans - with my kids as they got older and with my husband. Now we are on the brink of divorce and I’m too tired to do much of anything. The extreme fatigue drives me insane too!!! I had planned to retire close to a beach- now I know I won’t even be able to walk on the sand.
This disease sucks - it’s so freaking unfair and it seems like people who dont have it just cannot understand how debilitating and life altering it is…something that seems so simple to “regular” people seems to take forever for me…
BUT and I know it’s such a cliche thing to say, when I try to focus on the positive (are you in the U.S?) I feel a lot better because some days can be very, very dark…and although I’m always somewhat depressed and very tired there are some days that are better than others. Talking about my feelings helps.
What’s sinemet? Is it for your cramps? I dont suffer from cramps often - only once in a while but my knees and hips give me a lot of problems. So any kids, pets, single, married? Have u tried one of those balacewear vests from Motion Therapeutics?
Hi… thank you so much for your reply! I can totally empathize with you. I’m in the US, live by the beach (which I can no longer enjoy because I can’t walk there any more), have two cats and a have been with my partner for over 20 years. We’re not married and while he’s been helpful he is extremely resentful of me, and essentially reminds me daily that I have ruined his life and that he didn’t sign up for this. I still work every day, and that’s my refuge at times as my partner is retired due to his own disability (a heart condition). But there are more days than not when I don’t have the energy to get to work and then I have to stay home with him. I don’t have any children and I always regretted that until now. Not only is my relationship on the rocks which wouldn’t be fair to a child, now I have a disease that I could have passed on.
I’m so glad we “met”… no I try to think positively by remembering the rare occasions when I have a good moment. But it’s fleeting.
I’m sorry, I meant to tell you what Sinemet is. It’s a medication more commonly used in people with Parkinson’s. It’s a combination of levodopa and carbidopa which helps with the spasmodic movements and shakiness. It tends to “wear” off so I take Entacapone to make it last longer. I’m taking these medications 5 times a day every day.
Hi…what are your cat’s names? I have 2 dogs, Bear and Capone and 1 cat named Kitters. They are not really friends but they never fight and once they sniff each other they ignore each other (except when it’s cold they huddle up together ).
The reason I was asking if ur here in the US is that when we need to find things to be positive about I’m glad that I’m the US and not some 3rd world country. We took a vacation to Jamaica years ago (when I could still walk fine) and I thought to myself - if you are disabled here you basically rot in your house because there were no real sidewalks and the streets were very narrow or hilly…but I know that when it’s a really bad day that doesn’t really make much difference and we just want our old life back and it doesnt seem fair.
It’s good that you can still go to work almost every day. I work exclusively from home now. First I cut down to 3 days a week at the office, then 2, then eventually none. I miss it - never thought I’d miss the office!! But ideally if I could go in just once a week on whatever day I wanted it’d be great - basically I’d want my job to revolve around me
As for your partner I totally get it. My husband helps me out too, but it’s like he’s mad at “life”…and of course I bear the brunt of it…and I often feel bad about the “fun” he could be having without me. It’s not just the physical disabilty that has changed our lives…its all the emotions and the way it has changed me as a person…I love him but I’m starting to think we’ll be better off without each other. Hopefully he will be less irritated and hopefully I’ll be more at peace in the sense that I won’t feel guilty about ‘holding him back’ and I wont have to listen to his angry tirades about everything…sometimes I think if anyone should be angry it’s me!! - but I know something (a lot) was taken away from him too…he actually asked me for a divorce last November but we decided to try to work things out but I recently told him that although he said he wanted to work things out his demeanor doesnt show that and it doesn’t seem his heart is really in it so I’m ready to give up on us too. Dealing with this disease and the rollercoaster of a relationship in trouble is just too much!
And now to get some work done…
My cats are Gizmo and Autumn. I adopted them together, but they’re not from the same litter. They are however, typical siblings. Autumn is a bit crazy, but she always knows when I’m down and comes and stays with me. I’ve always had cats growing up and I can’t imagine not having them. Though they have been a source of arguments between me and!y partner.
I just got home from work. It was a good day physically, but now I’m really tired.
I do need to try and get some sort of life. Somebody told me that I need to focus on what I can do and not what I can’t. What do you do for fun?
Cute names! I know I couldn’t live without pets. I am utterly exhausted by the end of the work week and I work from home (so I get super brain tired) I can’t imagine still working outside my home! but that is so great you can still do it (even if exhausting). Your fun question is a good one…I was talking to a friend and she asked me the same question because things i used to love doing are too hard now…now I stick to watching movies, going to comedy shows and listening to audiobooks for fun…and I “convince” myself to do things I dont really feel like doing to begin with but then they turn out ok…like going to an acquaintances’ bday get-together…I have to “make” myself go because I start worrying about how I’m going to get around where there are people or how I can participate in conversation when it’s hard to keep up in a crowd, but I’ve found that as long as the group I’m interacting with is relatively small I can keep up and generally have a good time. I know some people really enjoy gardening (not me though - I’ve managed to kill every plant I’ve ever met). Ideas are always welcomed!!
Thank you for that, especially the gardenin piece. I too don’t play in the dirt. I think everything -unless it has flowers- is a weed and pull it. My partner, who loves gardening has come to realize that I’m a danger and need to stay away!
I’m trying to figure out what my “new” life is. Because of illness and surgeries, I have no vacation time. The last time I was on vacation was … I honestly can’t remember. In 2012 my area was devastated by Super Storm Sandy; this was followed by worsening back problems. Back surgery in 2014; and the rest, well as they say is history. So my last vacation was definitely before 2011…
My goodness, no wonder I’m physically, mentally, and emotionally drained!!!
I’m bringing a new life to this thread because it’s been invaluable to me. Especially in light of some current posts. I’ve had some current problems in the bathroom and helpful posts came here immediately. It doesn’t matter if they were the answers, it’s just that they were there. Fortunately for me, things appear to be getting better but I’m still seeing my gastro doc in a couple of days. Point is, THANKS.
It’s important to remember, often it’s the small seemingly trivial posts/ comments that can make such a difference to someone having a good day We’re all eager to hear about about medical breakthroughs, but on a day to day basis, often a few kind words can so uplifting xB