Hi. I am new to these forums and have read previous posts which have been very helpful.
A little bit about myself.
I was diagnosed with KD approx 14 years ago. It started with trembling in the hands and after an initial diagnosis of essential tremors it was discovered through a genetics test that I have KD.
I am in my mid-forties now and have noticed symptoms building up which I presume is due to KD.
My job requires me to work in front of the computer only so I am lucky in that sense. However, I noticed recently I even get tired from sitting in one place all day. For example, after a day sitting, I usually try to go for a decent walk which I find more difficult after sitting too long. I know it doesn't make sense to me either.
I've noticed in the past year more prominent symptoms such as:
feeling of loss of balance
difficultly speaking (especially noticeable if tired (Eg: end of day or speaking for too long))
one leg weaker than the other
impossible to climb steps without the use of a rail
Fatigue (this one is hard to pinpoint but sometimes I wake up feeling extremely tired)
More difficult going down stairs (going upstairs was already more difficult a few years back)
I have avoided getting a cane to help with my walking because I believe once I start using it I will become weaker (maybe a false belief)
I have lots of stairs at home that I can still manage to get up (sometimes with the help of my hands on the step and slowly).
I see it as if you don't do it you will lose the ability.
I'm at a point where I don't know if I should try to get time off work through disability. The main issues I find with work is that sitting all day makes me more tired at the end of the day and speech problems which impacts my interactions at work.
How do I know when to slow down?
I'm just wondering what others peoples experiences have been.
Chinup, thanks for telling us your story. You are doing well and I would encourage you to continue your exercise routines. With balance becoming more of an issue, a cane can be helpful. I used a cane for years at work and also had a walking stick I used when hiking. Both helped maintain my balance, especially when fatigued.
As the condition progresses, safety becomes more important. Several times I fell because I lost my balance or my legs wouldn't carry me any further. A few of those falls resulted in broken bones.
Since you are sitting for so many hours each day, I would also recommend a short break every couple of hours. A short walk around the office might help keep your energy level up.
Have you discussed your condition with your manager? I feel that is an important step in the process. He/she needs to know what is going on. As my condition progressed, I found it much easier to discuss next steps and potential transition points because he/she knew the situation and were willing to help my through the process.
How do you know when to slow down? You'll know when the time is right. Until then, enjoy your work.
Location: Chicago, IL
Chinup, welcome to the KDA forums. I hope you stick around.
All your symptoms sound fairly typical and roughly match what I experienced in my mid-forties. For me it was a period of rapid decline. At the time it didn't seem like anything I was doing was working and I switched to focusing on preparing for increasing disability.
Looking back, what I wish I had done, and what I am doing now is making a careful attempt to measure my physical performance. And I'm trying to track what I do that impacts my performance for good or bad. To measure performance, pick one or more activities important to you and do them regularly in a way you can measure. For example, if you need to climb stairs you might count how many stairs you can climb in a fixed amount of time, say 15 minutes. Or you might time how long it takes you to go up and down your stairs 5 times in a row. I've primarily been measuring my performance by using a GPS tracking app on my cell phone to log the speed and distance of my walks and bike rides. More recently I've added weight lifting to my routine and I'm just starting to figure how I want to track that. I've also started taking photos of myself in a somewhat consistent fashion as I think that might also prove to be useful in the future to see how well I'm doing.
Things that may impact your performance: diet/nutrition/supplements, medications, type and frequency of exercise and activities, injuries, sickness, stress, sleep, etc. Do what you can to track these things. Then as you make adjustments you'll have a better chance to see what helps. Some things with rapid/major impact you may figure out fairly quick. But try to do all of this in a way you can sustain and evolve over time as many things will be slow or subtle in impact. For things like exercise, there is going to be a sweet spot where too much or too often may be little or no better than doing none at all. And the sweet spot for exercise will change as you adjust other elements like diet and medications, so it's a challenging situation and no matter how well you are doing there's likely still room for improvement.
I believe this approach is the best way to help yourself. And if you share what works for you it may help others as well. I'm writing up my current regimen and my thoughts regarding each element. I should get it posted within a few more days. That might give inspiration for things to try. We should look to see what is working for others but as we are all different the better we can each evaluate what exactly works for ourselves, the better our odds for success. And I expect this will apply to whatever medically approved treatments for our disease which will be eventually offered. The better prepared you are to test and evaluate the better off you will be.
Thank you for your replies.
I certainly try to eat right but at the same time I do allow myself unhealthy treats
Why does it seem like its the bad stuff that taste so good.
I tend to use housework as a form of exercise but unfortunately the amount I can do is getting less. Also when I overdo it I usually don't know until the next day when I am extremely tired.
I have not discussed my situation with my manager yet. I feel it's hard to go down that road but I know I may eventually have to. I guess it's the uncertainty of the situation that makes me hesitant to go down that road.
Some of our largest muscles are within our hips and can be the first to lead to problems if ignored. If you have access to a physiatrist or physical therapist trained in sports medicine, I would book a visit. Some targeted exercise/ stretches may help lengthen those butt muscles and improve your balance. Spending some time on an exercise ball or backless office chair may help. The biggest thing is to treat yourself like a recovering athlete and mean it. Don't accept treatment designed to help you cope with your infirmity, that is a sure fired way to be a better invalid. If a muscle hurts find out when and why and deal with it.I recently complained to my physio guy that I was having more and more trouble erecting scaffolding especially with balance as the unsupported ends wavered -- he told me to talk to a scaffolding company as it wasn't his specialty and I did -- sure enough, there is a little clamp you can add from below that holds the section stable until you put the braces on. The moral of the story is to seek help and advice for problems as they arise to keep safe and not blame everything on KD. Having said that, poor sleep and resulting fatigue, and trouble climbing stairs (especially with a load) are KD hallmarks. There are studies suggesting mitochondrial dysfunction and supplements you can try, and others as Todd has suggested. I'm 64 and if people want me to slow down, they had better get the job done before I show up, yes there are days when it hurts and for years I was almost the last one out to my car at the end of a shift. I am not stupid, I've used canes, braces, a walker and a wheelchair when they were needed, but currently use none of the above unless my wife wants me to meander through a mall or maneuver through an airport (both considered torture by the UN) As for getting time off for disability, sure if you think that will improve your life and give you the time to go back to school or start a business where you can stand when you need to and accomplish more in an email than you can with a speech. Seriously, if you can leverage the disability to profoundly affect your life for the better, go for it. I'd be happy to hear your plan, but if pizza and beer are holding you back now, don't expect it to easier without a work schedule. (sorry for the rant, but hey, its 4am, I'm not sleeping and my hand hurts where they took the stitches out)
Location: Chicago, IL
chinup, 4 months ago I would have said the same thing. Common foods for me were grilled cheese sandwiches or frozen pizzas. I felt pretty virtuous because I'd buy fairly high quality bread, cheese and pizzas and then improve them with produce from our garden such as slices of tomato, leaves of spinach and basil, and a fresh bell pepper, etc.
I would have been taken aback and perhaps even insulted by BC Paul's comment, but now I absolutely love BC Paul's ass kicking attitude.
In hindsight my improved high quality pizza and cheese sandwiches while perhaps better than what most of my peers eat were not that good. Most of the calories I was eating were high glycemic carbohydrates with quite a bit of saturated fat and loaded with salt. And I'd grill my sandwich to a pretty and tasty brown in a buttered hot skillet. I've since learned that the browned foods have large amounts of advanced glycation end-products and they sound particularly bad for those of us with SBMA.
My virtuous addition of veggies to my pizza would contribute at best 10% of the calories of the meal and likely a heck of a lot less. There's not many calories in spinach or even tomatoes but a lot of nutrition.
Which means there's room to do so much better. I now try to get the majority of my calories from quality foods such as fresh vegetables, fruits and nuts, etc. and accent with small amounts (calorie wise) of cheeses and other foods that have less nutrition per calorie. And I completely avoid empty calories such as the refined sugars used to sweeten almost all processed foods. And the sensitivity of my taste to sugar has increased such that an onion tastes intensely sweet on its own and putting any commerical barbeque sauce on it would make me gag.
Making the switch wasn't as hard as I expected and got easier quickly. It is nearly effortless now. Things that used to result in nearly irresistable cravings such as potato chips and ice cream I now mentally associate with being diseased. I now crave foods I associate with health and find them increasingly satsifying.
The biggest change for me was transitioning from a belief that I had an untreatable disease and decline was inevitable until someone smarter came up with a treatment to a realization that SBMA is more like being dealt bad hands in a game of poker. It's not the end, keep focused and play the hands well.
As far as your work goes, sitting idle for long periods of time at a desk job is undoubtedly hard on anyone, especially as we age and even harder on someone with SBMA. So make it better. Find frequent excuses to get up for a drink of water or consult with a coworker. When you are stuck sitting don't sit idle. Tap your toes, flex your muscles, never stop coming up with new things to try and keep track of what helps. If you look hard enough you will find things that help and you can slow, stop and even reverse the decline that before seemed unbeatable. And that will be tastier than anything you give up.
Kennedy's Disease Association
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