Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The KDA web site is a source of real information and even stories of other guys with the same problem. All of a sudden I was not alone, and also the information about the research going on gave me hope."

2018 Chat Room Transcripts

Topic: Open Forum  
     
ronmoffett   Hello David
ronmoffett   Hello myla
DavidOhio   How are you Ron?  Is it any warmer up north?
ronmoffett   YES. Yes . Yes. Finally, had some warmer weather and I feel alittle better. I didn't think I would survive the winter. It was endless. How about there ?
DavidOhio   We have a week of very summer like heat, humidity, and thunderstorms.  Today it is cloudy with more spring like temps and I enjoy that much more than an early summer! 
ronmoffett   Yes. me too. seems like the same weather her
ronmoffett   How have you been feeling ?
ronmoffett   Myla, not sure if I know you. Are you new to the KDA chat and website ?
myla2828   Good morning, this is my first time in the chat room.
DavidOhio   I am currently experiencing a little more pain, but then again as my therapist pointed out, it is spring and that means more activity outside.  She is right I do help Margy some with a little clean up and I am still able to walk behind the mower for a section of the lawn,
ronmoffett   Good morning. Myla, where you from ?
myla2828   California
myla2828   My husband was diagnosed with KD last November and we both have been reaching out for knowledge.
DavidOhio    HI myla, today's chat has no specific topics and we typically just catch up on how each of us is dealing with their "life with KD"
ronmoffett   David, I am experiencing the same increased pain. Probably like you said. Increased activity. Do you use a scooter or wheelchair at all ?
myla2828   Where do we go to find any remedies for the pain of cramps
ronmoffett   Myla, Cal is nice for KDers. Its warmer which helps. How old is your husband
DavidOhio   Ron, no I am still using a cane, but I did acquire a rollator and plan to use it on our trip to Rocky mountain National Park which we will start in late May.
myla2828   54
ToddAllen   Hi all!  Can't stay, just dropped in to say hi.  Hope everyone is doing great.
ronmoffett   Doing ok Todd. Thanks. How about you. 
ToddAllen   I had a rough winter with several colds.  Getting over what I hope is the last of the season.
DavidOhio   HI Todd hope all is well for you.  I am doing better than I deserve so far this spring
ToddAllen   This morning though had a record setting walk for me, 1 mile in 40 minutes.  2 years ago I could barely complete a mile in 90 minutes.
ronmoffett   Myla, I have had a lot of cramps come on in my life when I was younger. Woke me up a lot. It has been less now. I make sure I drink a lot of water and I am well hydrated all the time. Cramps is one of the first signs of KD. Not sure if there is medication to prevent them
DavidOhio   Myla you found this chat so I am sure you have at least visited the website.  I would encourage you to make use of the resources found there, in paritcular the Forum pages.  It is basically a open discussion of all types of topics.
ToddAllen   Glad to hear it David!
myla2828   Thank you for the information will go into the Forum pages.
ronmoffett   Todd - very nice. I am not sure I could walk a mile. Do you sit down during the walks ?
ToddAllen   I used to.  That's why my pace was so slow.  This morning I managed it with just a few pauses.
ToddAllen   got to go.  Bye!
DavidOhio   Myla, one thing I want to emphasize is that from what I have learned since being diagnosed in 2009 is that each person experience is different.  There are of course a number of symptoms but we each seem to have different experiences.  The other caution is to not fall into the trap of thinking all symptoms are KD related.
ronmoffett   Myla - one oof the best resources that helped me understand what its like to live with KD is Bruces blog. Living with KD Blog. He has KD and and a background as a writer.
ronmoffett   Take care Todd
DavidOhio   The one thing I did early on was to read the "smart exercise" guides on the website and then get my doctor to prescribe physical therapy.  I printed out that material and then presented it to the therapist so that she would know about our unique needs
DavidOhio   Myla I am still working with that same therapist and I have about two sessions a month now.  I attribute the fact that I remain mobile with just a cane to the daily and periodic movements I work out with her advice and encouragement.
ronmoffett   David. How far or long can you walk now in the Rockies 
ronmoffett   David, if you don't mind me asking. - with the PT. Are you private paying that or does insurance cover the sessions
DavidOhio   Ron, right now I am able to take a 30 minute walk with my wife around our neighborhood and not feel fatigued afterward.  Our plan out west is for me to have the rollator so that I can sit down a rest for a few minutes while we walk around one of the mountain lake that have "all persons" trails.  There are 6 or 7 of those at that national park.  We will attempt one each morning and just see how things go.
ronmoffett   David - I didn't know about the all persons trail. The rollator should help. i have one. If I walk too much. I get a lot of pain in my muscles thats hard to get rid of
ronmoffett   David - how has your cousin Tom been feeling ?
DavidOhio   I do not mind at all Ron, my "insurance" technically covers the PT.  However the benefit I get from that "insurance" is just the discount that they negotiated with the hospital for those services.  My monthly out of packet is about $400 for PT.  
ronmoffett   David - it sounds like it is worth it.
DavidOhio   Tom is doing fairly well right now, he is back to sending out his daily history tease and I trade periodic messages about family times.
ronmoffett   Good to hear
DavidOhio   Hey Ron before I forget, do you have an update on Mike and Paula Goines?
ronmoffett   Yes. They seem to be doing fine. They went for a short trip camping to see how Paula would feel. It went ok. I am supposed to connect with him this weekend or later next week. 
DavidOhio   As for the PT cost I agree that it is well worth the financial cost.
DavidOhio    Good new about Mike and Paula, please tell them I said Hi and hope that they can get out an enjoy traveling again.
ronmoffett   David - I will. Sounds like he can. 
ronmoffett   David - do you have any problems with acid reflux or swallowing 
DavidOhio   Ron, do you have travel plans.  The last time we chatted I think you were considering trips to potentially warmer new home sites.  How is it going?
ronmoffett   Yes. I am going down to TN next week. Look around. I have a friend down there which I will visit at some point during the trip. Its not too far for me to drive. About 9-10 hours 
DavidOhio   Yes I take a daily OTC generic prilosec tablet each morning for acid issues.  And I have to be careful about certain foods.  I used to love spicy foods but now I am need to avoid anything more than very mild "heat".
ronmoffett   I also take something. I had Barrett's years back so I am very careful on what I eat. Just feels that it has gotten worse now that I have gotten older and my swalowing issues have increase. Not sure if the Reflux is KD related or not.
DavidOhio   I agree about the drive time, our travel plans are to limit actual time on the highway to between 6 and 7 hours on the way out and back.  And we will definitely stop at least once for an extended period of time to move around.
ronmoffett   This is what I do. I can't drive more than 6 or 7 hours. Then I am done. I don't have the endurance to do it more than a couple days. Thats why I am looking just south. Florida would be nice for me to live but I would never be able to make the trip back here to see my son
DavidOhio   I do not think the reflux is a KD item but it is something that impacts our already weakened throat muscles.  Have you seen a speech therapist?  I been to one on two separate occasions and both times we worked on throat muscle activities and that helps.  Aspiration is a definite risk for KD men and we need to do all we can to avoid that problem.
ronmoffett   Yes. Been to one and a ENT. Having a lot of issues where my throat gives out, my speech stops. Aspirate a lot. Having a lot of pain in the throat from the reflux and tightness. I am going to the MDA clinic next week. Hoping the DR will have some words of wisdom
DavidOhio   As for travel to/from Chicago in the future you should check out Megabus you might be able to leave the actual driving to someone else.  I think there might be a direct route to/from somewhere in TN.
ronmoffett    Never heard of MEGA bus. Sounds perfect. Have you used it ? Is it different then Greyhound ?
DavidOhio    One of the things that Bruce suggested based on his experience was the use of a bed wedge to elevate your head while sleeping.  I have been using one for years now and we travel with it.
ronmoffett   Yes. I am going to buy one today for the trip. At home here. I have my bed on raised 6 inches on the one side. It helps
ronmoffett   Do you remember the brand you have ?
DavidOhio   Yes I used it to visit Anita. The Cincinnati to/from Chicago route has multiple times each day and it takes about 6 hours with a couple of stops.  The only  problem is you have to be able to do some steps and that is now very hard for me.  And yes it is different from greyhound service.
ronmoffett   Thats fast. I don't think I could drive that distance that quickly
DavidOhio   No I do not recall the brand but I got it from a Medicine Shoppe pharmacy.  
DavidOhio   Well Ron I need to move on to other tasks today, but we can always continue to share thoughts and actions using email.  Hope you can get out and enjoy some sunshine in the Windy City this weekend!