I am not understanding you as a person. You were not a klutz just did not find pleasure in sport you liked other things. For anyone, understanding information as best as you can but given any information thoughtfully to others with the best attitude you have is the best that anyone can do.
Hutchy, I’m very glad you had the opportunity to consult with a speech language pathologist (SLP). I’d like to suggest that anyone experiencing difficulty with swallowing (e.g., coughing/choking/ with food/drinks/pills) consult an SLP or other professional (e.g., occupational therapist) who specializes in swallowing disorders (dysphagia).
Don’t put off seeing a swallowing professional - there can be long wait lists for outpatient swallowing studies (up to a year in parts of Canada). The SLP will be able to give you some strategies to help improve your swallowing.
Some strategies are general. For example:
- Sit up all the way (90 degrees) when eating or drinking and stay sitting up for 30 minutes after meals (60 minutes if you experience reflux or heartburn)
- Eat slowly and take small bites and sips
- Chew thoroughly before swallowing
- Completely finish one bite/sip before taking the next
- Avoid distractions (don’t watch TV or talk while chewing/drinking)
- If you’re having difficult taking pills, try taking them one a time with a spoonful of applesauce or yogurt or pudding
- Practice good oral care!! Brush your teeth frequently.
Some strategies are specific to the person (such as lowering your chin to your chest when swallowing). What works great for one person may be harmful to another. The SLP will (or should) trial these strategies during a video study of your swallow so she can be certain that the strategy is helpful.
Coughing while eating/drinking, is your body’s way of making sure that food/liquid is not going into your lungs. If food/liquid goes into your lungs, you run the risk of developing aspiration pneumonia. The BEST way to reduce this risk is to take really good care of your teeth! See a dentist/denturist regularly. The less bacteria there is in your mouth, the lower your chances of developing pneumonia.
If you cough when eating/drinking and you start to develop symptoms of pneumonia, please go see your doctor.
Note: The information in this reply is NOT professional advice. Please contact your SLP or other swallowing professional if you are experiencing swallowing difficulties.
More information can be found at:
I’ll be honest here. I find myself doing the “why me” thing now and then. My life wasn’t supposed to turn out like this. Having this illness made my life detour. Sorry to rant some here but it helps to express myself to folks who understand.
I feel your pain my friend, it just isn’t fair.
You are not alone in having these thoughts. There is at least one other on this site (me) feeling this way. I would imagine there may be more.
And to make matters worse, I get so tired of hearing “look what you can do”. Blah, blah, blah!
On the bright side we are not alone. And we share hope like no others.
It’s highly probable everybody has really discouraging thoughts at times, and the best thing is to voice them if you can, don’t bottle it up…
You know what really gets me sometimes? And this is super unfair because there are a lot of older ataxians here. When I was first diagnosed in my late twenties I became aware that I might never be elderly, and I started to feel jealous of older people.
It doesn’t happen much anymore, but it does still happen. What someone who complains about being old even though they’re healthy or a person who I think throws away their health with an addiction or general inactivity.
We’re all human. We get it.
Thanks for sharing. Very well put. I can only say I feel like this many times. I’m not a bad person, I just miss my old self sometimes.
I can relate but in a sightly different way, I had year’s of frustration of not being able to do thing’s but not knowing why! But still asking the question to myself and my husband. I couldn’t understand why a women of my age and active, reasonable fitness couldn’t ride a bike, dance classes, aerobic classes etc. There where time’s of desperation when I would just cry and times when I really did want my husband to be in my shoes but that was before I was diagnosed, I certainly don’t wouldn’t want that now!
Yesterday, I said to my Husband ‘If you could spend half a day in my head, you’d understand perfectly’… My Mother (never diagnosed) had times when she coped as normal, and then other times she was zoned out with fatigue… She had a terrible time with my Father, he thought she was ‘putting it on when it she felt like it’
I’m always glad to hear what you have to say. Funnily enough my husband has been used to my fatigue form the on set of our relationship. I have ceoliac disease diagnosed at 11mths of age. Although friend’s and family found it amazing how I could just go and have a sleep then ever. I’m sure they thought I was just being lazy! At other times I wouldn’t help out at family or friends places with the cleaning up and that most certainty conjured up some raised eyebrows.
So now more than ever with the added bonus of ataxia and coronary artery disease fatigue is a major part of life!
So be it!
Family and friends are more in tune with all my health issues now and are all very compassionate, helpful, supportive and loving.
Very Lucky Lady!
Sorry to rant again but it does help to post here. My friends who are supportive but do not understand are all good people but think that I’m trying to ignore them when they want to do something that is difficult for me. I guess that this is for family as well as many of you have posted about or even experienced yourselves. Because I don’t use or need any aids, but still have severe problems, most folks think that my physical problems are not severe. Boy, are they wrong.
One of my friends has Chrons Disease [spelling?]. So, I reached out to him because I thought that he would be the best to understand since he has continuing problems. The only difference with his illness is that there is a treatment of sorts while Ataxia really has nothing at this time. The only thing that is beneficial to us is exercise. I kinda explained to him but he said something yesterday in the presence of my healthy friends that shows that he doesn’t really understand or maybe doesn’t want to. That hurts. I can see why Ataxians lose relationships! My saying no doesn’t mean that I don’t want to do it. It’s just that I know how difficult it would be to do for me through my experience so I have no other choice. They only know that it’s not difficult for them so it should be easy for everyone.
Sorry about the rant!
EDIT: I think that friends not really understanding about your difficulties makes the illness worse, IMO. I kinda wish that I could give them my Ataxia for an hour so they could experience my difficulties and then they would know.
Well touching on the friendship topic again, I went away with a girlfriend over night to the city. We went to a show, dinner and a walk around the city at night and she was very helpful and caring. I did explain to her I’d need assistance walking, stair’s uneven path’s etc she was very kind. Only one incident a security guy gave me a filthy look because of course I needed assistance down some stair’s with out rail’s. So I just held my head up high and walked on! I did notice by the time we got home my friend looked as worn out as I was lol… So it will be interesting to see if she offer’s to take me again?
And there it is again!
good on you Linda, let idiots stare, you shld be proud of yourself…
No it’s not bad thinking. I feel the same way sometimes. I used to have a full-time job which required much walking. Now I am in a nursing home stuck in a wheelchair most of the time. I cannot stand up without getting help. Thank God the place where I live is very supportive of my concerns. Please keep the faith and don’t give up. It also helps to have a sense of humor. I hope this helps.
I was never gifted at sports.Crashed so many cars in my 20’s I ended up being sent for 3 MRI and similarly to yourself was diagnosed with a shrinking cerebellum but was also told the shrinkage had stopped. Despite numerous blood tests they could not make any further diagnosis other than ataxia of a undetermined type. Since my late 40"s I am now 58 my condition has gone rapidly downhill and now I am totally wheelchair bound, double vision which prevents driving etc… my question is how do I retrain a shrunk cerebellum ???
Wish that I had the answer to that. Coping is the only answer I have. Sorry to hear of your difficulties.
I’ve had Ataxia for a looong time now and as time has gone passed I find myself thinking of different things and thoughts. First thing [I’ll be honest] is that I’m very jealous of healthy folks. They know NOTHING of what they have. They might be sympathetic but they have no understanding. It’s been over 50 years since I developed Ataxia and although I’m not depressed I do feel down and dream [wonder] what my life would have been if it were different. I still do things [well, some of them anyway] that I would always do but my interest is not as strong as time has gone by. Which kinda means that I couldn’t fulfill my goals and dreams.
We all here can understand what I’m saying. So what’s your thoughts?
Sometimes I look at old pictures, before I developed ataxia and think.