Home Login/Join My Space Help Members Forums Search Today's Active Topics New Since Last Visit
Kennedys Disease Association Homepage    Kennedys Disease Community    Forums  Hop To Forum Categories  General Discussion  Hop To Forums  Open Topic    How are you dealing with Kennedy's Disease in your life?
Page 1 ... 9 10 11 12 13 

Moderators: Bruce, SusanneW
Go
New
Find
Notify
Tools
Reply
  
How are you dealing with Kennedy's Disease in your life?
 Login/Join
 
Location: Michigan
Registered: 03-21-2009
Posts: 11
posted   Hide PostReply With QuoteReport This Post  
We got on the subject of foods and choking during a recent chat and I was asked to put my list on the forum. I have seen other posts here, so I'm adding mine here. I will be adding this to the Food topic too.

Over the years I have found that certain foods cause me to choke whenever I eat them. Taking smaller bites and chewing longer are not much help. Even drinking a beverage to wash the food down does not work entirely. I came to the conclusion it was more due to the size, type and texture of the food. This is from my hand-written list I provided during my hospital and rehabilitation center stay last year. The two swallow studies I have had seem to support my conclusions. This is the short list version. I also have a long list if anyone is interested.

Hot food should be served and eaten hot. Once it gets cold, it becomes a problem. May need to be reheated.

Nuts, grains, or seeds
Anything with nuts, grains or seeds is difficult to swallow.
Fruits and Vegetables – Berries, broccoli, cucumber, tomato
Bread or buns with sesame seeds, caraway seeds
Desserts, snacks, salads – often include other items I cannot eat too
No rice at all – too small to manage
Cold cereals

Skin
Skins on some fruits and vegetables can cause a problem
Apple, peach
Navy beans, kidney beans, corn, cucumber
Some meats - Sausage and hot dogs with the skin – get skinless

Dry or chewy
Any meats if over-cooked - beef, pork, chicken…
I get tired when chewing and risk of choking increases
Eggs – yolk is dry if fried, hard-boiled or scrambled

Stringy
Fruits and vegetables – pineapple and celery, lettuce, spinach; green beans unless cooked
Melted cheese – Mozzarella and Muenster are the worst
Beef can be stringy

Crumbly
Breads, cakes, cookies, chips, popcorn, toast
Coatings on meat, poultry and seafood – crispy or cornmeal
Coconut
Hamburger
Vegetables – cauliflower, onion – tend to break apart into smaller pieces

Sticky
Candy and desserts with caramel
Beans - Navy, Kidney, Lima
Melted cheeses

Spicy
Anything that is too spicy due to seasonings or sauces
Chili – Cayenne pepper, hot peppers. Kidney beans, onions and hamburger make it a deadly combination

Some typical foods prepared with any of the items above that can induce a choking episode. I either have to remove the item or not eat the dish.
Pastas – meat – hamburger or Italian sausage, cheese
Potato salad – egg, onion, relish
Salad – fruits or vegetables on the list
Soups and stews – may have rice, onion or celery
Chicken or Tuna salad – onion or relish
Picture of Bruce
Registered: 09-28-2005
Posts: 654
posted   Hide PostReply With QuoteReport This Post  
Stan, thanks for sharing the list. If I couldn't eat most of the foods listed, I would probably starve.

Skins on apples or tomatoes are a problem for me. If I am very careful I can normally handle them, but it is easier if I do not try.

Bread or cracker crumbs are always a problem especially if I try to breathe while it is in my mouth.

Occasionally I will have a problem with tortilla chips, but I still eat them.

Stringy vegetables are a problem if I am not careful also. If I chew them thoroughly I can normally get by okay.

The key for me is to:
  • chew food thoroughly before swallowing,
  • take smaller bites, and
  • not talk while eating.
Unfortunately, I forget the three keys quite often.

Swallowing exercises have helped me greatly. I practice them every day.

Again, thanks for sharing. Bruce
Location: Michigan
Registered: 03-21-2009
Posts: 11
posted   Hide PostReply With QuoteReport This Post  
Bruce,

Thanks for your response.

I see we share many of the same food intolerances. I am also sure that there are many others with KD that have similar issues. That is why I published my list.

Yes you are correct that the inability to eat such a wide variety of foods could cause one to starve. That is even more true in my case.

As we know, KD affects everyone differently and we all progress at different rates. In my case, I think the progression has affected my swallowing ability more than my legs and arms.

As I have mentioned in the Chats when we discussed food and choking, "If I ate any slower or took any smaller bites, dinner would run into breakfast." The general response to eat slower, chew food completely and not talk while eating does not work in all cases. Those with KD are probably more keenly aware of the importance of these rules than the general population. I would also add to "avoid distractions" too.

The swallowing exercises have only been moderately helpful.

My inability to eat so many foods caused me to lose so much weight that a feeding tube became necessary to ensure I got sufficient nutrients to maintain my weight and health.

As we all progrees with KD, getting a feeding tube is something that we all need to be aware of and expect may become necessary. Having a feeding tube also adds more complexity to our lives and more that we need to know.

Having the feeding tube does not mean I have given up on eating either. On days I feel I can eat, I will eat the foods that I can still eat. On days I cannot eat, I plug in. For other days, it is a combination of both.

I think this would be an issue to discuss more completely and in more detail in a future chat, or here in the forum. I would like to hear what others with eating problems have to say, especially from those that already have feeding tubes.

Thanks,
Stan
Picture of Bruce
Registered: 09-28-2005
Posts: 654
posted   Hide PostReply With QuoteReport This Post  
Stan, I believe a chat topic on foods, eating, swallowing, and feeding tubes would be most appropriate. Thanks for the suggestion.

Also, since you are more experienced than most in this area, any additional thoughts and suggestions would be great here in the forum.

Thanks, again.
Picture of Bruce
Registered: 09-28-2005
Posts: 654
posted   Hide PostReply With QuoteReport This Post  
The Natural History Of Kennedy's Disease

I just published an article in my blog on a 2006 study of 223 patients with Kennedy's Disease.

Living with Kennedy's Disease

The study was very interesting and I believe worth a look from anyone living with this health issue.

Let me know your thoughts?
Picture of Bruce
Registered: 09-28-2005
Posts: 654
posted   Hide PostReply With QuoteReport This Post  
Preparing for Early Retirement

A Financial Planning Guide

Over the last couple of weeks I published several articles about financial planning and documenting everything in my "Living with Kennedy's Disease" blog. I incorporated this information (and added more detail, examples and images) into a document I now call, “Preparing for Early Retirement; A Financial Planning Guide.”

The guide is an eighteen page document that will help anyone interested in the financial planning process. There are also other recommendations and tips to help you prepare for the future.

Throughout the guide I relate personal experiences as my wife and I went through this process. In the Background section, I explained that “Twenty-three years ago, when my wife and I realized that my career might be cut short because of Kennedy’s Disease, we developed our financial plan using the process shown below. It was a wakeup call. We discovered that based upon our current situation (savings, employee benefits, etc.), we would not be able to retire early unless something changed dramatically. Within a year, I had changed companies. The new company offered a pension, 401K, disability insurance, stock options, as well as other benefits. Seventeen years later we retired debt-free after exceeding our retirement goals.”
__________________________________________
Table of Contents

Disclaimer

About the KDA

Background

Overview of the Financial Planning Process

The Seven-Step Financial Planning Process
1. Evaluate
2. Analyze
3. Establish a Target and Goal
4. Execute the Plan.
5. Measure Performance
6. Review Results
7. Adjust the Plan

Other Planning Considerations
1. Document Everything
2. Short and Long-Term Disability Insurance
3. When to begin discussions with your company
_____________________________________________
If interested, the guide can be downloaded from the KDA website.
Registered: 07-23-2008
Posts: 9
posted   Hide PostReply With QuoteReport This Post  
I joined this group a couple of years ago, after my neurologist ordered me tested for SBMA.

As it turned out, I didn't have Kennedy's, but your online Kennedy's community was the first place that I found practical suggestions for living with the neurological disease that I finally found out that I did have. (After the first doctor's misdiagnosis darn near killed me.)

Thanks for helping me through a really difficult time.

It's a long story. If you're interested, I've given the details in an attachment that shows the importance of getting a second, third and fourth opinion.

Text FileThe_Fourth_Opinion.txt (7 Kb, 17 downloads)
Registered: 07-23-2008
Posts: 9
posted   Hide PostReply With QuoteReport This Post  
Sorry about the attachment. I saved it as a word doc. It didn't come out right as a text doc. Well if your try to read the illegible text aloud, you have an idea as to what my voice sounded like to other people.
Picture of Bruce
Registered: 09-28-2005
Posts: 654
posted   Hide PostReply With QuoteReport This Post  
Jim, what an ordeal ... WOW!!!!

I am always commenting about the number of times people living with KD are misdiagnosed, but your case shows another aspect of being misdiagnosed.

Thank you for sharing your story. I thought "The Fourth Opinion" explained your situation quite well.

Good Luck!
Picture of Bruce
Registered: 09-28-2005
Posts: 654
posted   Hide PostReply With QuoteReport This Post  
Interesting Patent Application for those of us with KD

KD Remedy Patent Application

Take a look at the above patent application. It was filed in 2006 and approved on June 01, 2010. I am checking with Dr. Fischbeck to learn more about this since he is in contact with several of the researchers named in the application. It was my understanding that the three clinical trials did not prove out to be effective. When I know more I will post an update.
Picture of Pocatello Jim
Location: Pocatello, ID
Registered: 05-24-2008
Posts: 109
posted   Hide PostReply With QuoteReport This Post  
Bruce, thank you for the link to the patent application. I look forward to you update. The drug they patented to study as a treatment for KD is already widely in use in treatment of prostate cancer in men and endometriosis (sp?) in women. I know that this is one step in the process and that we are a long way off, but I have read the listed side effects of leuprorelin and experiences of men who have used it and they give me pause. Weight gain (I am already 5'6" and 260lbs), Depression, reduced or non existent libido, and lethargy. As I said, I look forward to your follow up report.

Thanks,

Jim


Pocatello Jim
Picture of Bruce
Registered: 09-28-2005
Posts: 654
posted   Hide PostReply With QuoteReport This Post  
The Clinical Features of Kennedy's Disease

Please check out my Living with Kennedy's Disease blog article on this recent study. It is a compilation of information collected from the NIH clinical trial. It is similar, yet different enough from the Natural History of SBMA report.

Clincal Features of KD

On the blog there is also a link to the actual published article for further reading.
Picture of Bruce
Registered: 09-28-2005
Posts: 654
posted   Hide PostReply With QuoteReport This Post  
An AFO that appears to work ...

Murray, a past KDA board member and a person living with KD has advised me of a new AFO that is working for him. It gives him greater mobility and confidence. You can read more about it in my " Living with Kennedy's Disease blog.
Picture of Pocatello Jim
Location: Pocatello, ID
Registered: 05-24-2008
Posts: 109
posted   Hide PostReply With QuoteReport This Post  
I think my topic fits in best here. You see I had an epiphany this morning. For the past several weeks bedtime and sleeping in general have been hell for me. When I go bed, I get stiffness and cramping in my neck, arms, shoulders, calves, and feet. It starts almost as soon as I am in bed and is still there when I wake up. Saturday night, it was so bad that I put my full body massager on the recliner and slept in the recliner with heatpad and vibrators on full blast. Then last night, my wife put a mattress pad on the bed that we took off a few years ago, because it made us both hot. I slept so well!

Then this morning it hits me. I am cold sleeper. I sleep with the air conditioner cranked up in the summer and a ceiling fan on, in my skivvies with no blankets. What does cold do? Duh! Causes things to contract!

So, here KD goes again, changing my life. Pajamas, long sleeve t-shirts, blankets, here I come. This is going to take some getting used to, but if it reduces the cramping and stiffness, it will be worth it.


Pocatello Jim
Picture of Bruce
Registered: 09-28-2005
Posts: 654
posted   Hide PostReply With QuoteReport This Post  
Jim, thanks for the commentary on this subject. For years, I was the one that did not want any blankets on and had to have a fan running. Even in the winter I only used a light blanket. My wife, on the other hand, loved to have blankets and a comforter. These last few years, my lower legs and feet always seem to be cold. When I touch them, they feel warm, but the sensation coming from the legs and feet is just the opposite.

Now, I love an electric blanket and it seems to work wonders for my muscles and the cold sensation I feel. Even during these hot summer months, I have to start out with blankets on my legs and then after a couple of hours I can roll them down for the rest of the night.

The strangest thing about this cold sensation is that it keeps me from falling to sleep. Once my legs and feet warm up, my muscles can relax and I can sleep. Strange.
  Powered by Social Strata Page 1 ... 9 10 11 12 13  
 

Kennedys Disease Association Homepage    Kennedys Disease Community    Forums  Hop To Forum Categories  General Discussion  Hop To Forums  Open Topic    How are you dealing with Kennedy's Disease in your life?

Kennedy's Disease Association
PO Box 1105 Coarsegold CA 93614
Tel: 1-855-532-7762
Email: info@kennedysdisease.org