The Slide

A while back I wrote about "the slide" I was going through. When I saw my neurologist in May, he had never heard of something like this before. He questioned whether I was just having some physical symptoms because of some emotional issues. I believe I convinced him that what I was experiencing was real and nothing to do with anxiety or depression. He wanted to hear more about it and I need to let him know the next time a slide occurs. He is a great doctor who listens and learns from my experiences. He is also an advocate of the KDA. I am fortunate to have him as my doctor.

I believe a few others over the years have expressed experiencing something similar to "the slide." If you have ever experienced something like this let me know.

"I am going through one of those times where I am weaker. I call it the slide because life is good and everything seems to be going along just fine when one day I wake up and find it difficult to do what I have been doing. I call the 'life is good' period 'the plateau'. It seems like my body and strength has stabilized and I am pretty much comfortable with everything. 'The slide' period is the most difficult for me both physically and emotionally. My muscles ache, exercises are more difficult to perform, just getting up and moving around is more difficult, and I can sense a weakness that wasn't there before. The emotional aspect of 'the slide' is difficult because I don't know when I will reach the new plateau and where I will end up strength-wise. Fortunately, the plateaus last a lot longer than the slides allowing me to become comfortable with my new level of capabilities. Often, through focused exercise, I can come back a little."

Yes, there is definitely apprehension, but we are staying positive and will be glad to have the surgery behind us. The waiting has been tough! I so appreciate all of the support we have received through this forum and will keep you updated. Thanks again

Hi all this my first post. I had to respond to the slide comment. I was just diagnosed last year. I have had symptoms for about 20 yrs. I have been having problems lifting anything more that 20 lbs with my left arm. This has been going on for about 2 months now. Other than that, my slides seem to be day to day. Left hip on thursday, left knee friday, saturday and now (this is new)...right leg on sunday :-( Today was a good day, lets see what tomorrow brings. Hope everything went well Auntie Robbie2.

Just a quick update on my husband Terry's progress. He came through a very long (6 1/2 hour) surgery today, under general anesthetic, and did extremely well! There were no problems, his surgery went smoothly and they were able to extubate him in the recovery room. He had a minor laryngospasm after the tube was removed, but his doctor said he recovered from that quickly. Terry will be in ICU for the next 48 hrs for close monitoring and has an epidural catheter in place, providing excellent analgesia. When we visited with him in ICU, he was awake, alert, talking and in great spirits. We still have a long ways to go, but we hope we have been able to conquor the biggest hurdle today! Thanks to everyone for your support, prayers and encouragement!

re: THE SLIDE

Welcome Bruce! You will find good information and great support here : ) Your Uncle Terry did great today! Take care.

Robbie, thanks for sharing the results of the surgery. I cannot even imagine how difficult it must have been for everyone during those 6½ hours. Let us pray that the worst is behind Terry and that life will be one positive step after another.

Robbie2, Glad to hear your husband came through the surgery well! Nice to have you back in the forums too! Sorry for the delayed reply, just been busy the past few days.

Has anyone experienced weakness in any one finger? Mine is my trigger finger and for work this is crucial. Other fingers are unaffected at this time. X-rays show no arthritis....etc., so I am wondering if KD has taken it's toll on that finger. Thanks for any insight.

Finger strength ...

Ray, over time your fingers will lose strength as well as your toes. Some become weaker than others. If you have checked to make certain that it isn't anything else (cause), it most likely is KD related. Check with your neurologist, however, and he may be able to help diagnose the problem.

There is also some excellent finger exercises that help maintain strength in those muscles. If interested, check them out on our web site.

Thanks Bruce.

Future Clinical Trials; In the News ...

Just a short note to let you know that there is the possibility of two-to-three clinical trials in the next two years. We could have a drug trial within the next six-to-nine months. The trial would be using a drug where a portion of the initial research was supported by a KDA research grant and worked on at NIH.

The second trial could be the effects of exercise on Kennedy's Disease. This trial would determine whether there are any benefits to a regular exercise program including the type of exercises that are beneficial and those that are not.

The third potential trial has a few more hurdles to go over before it is ready and could take 18-24 months before being ready. It is another drug where a portion of the initial research was supported by a KDA research grant in 2007.

I cannot go into the details of any of these trials at this time, but just wanted to let you know that things are brewing at NIH. More information will be forthcoming.

The results of the previous clinical trial will be available shortly. Those that participated in the program have already been notified of the results. A paper is being prepared for publishing on the trial, but is still not available for distribution.

RE: FUTURE CLINICAL TRIALS

This is exciting news Bruce! Looking forward to reading more about it in the coming months

Thanks Bruce! My husband has mentioned he may possibly be interested in participating in future trials. Please e-mail me & let us know what is required for participation and how to become involved. That information would be most helpful in the decision making process. Thanks!

Robbie2 - I just wanted to say I hope all is well with your husband! I hope to talk with you on the chat sometime!

Thanks for enquiring after my husband, Terry I am pleased to tell you that he is doing great and his pathology report came back showing no cancer cells in any of the sampled lymph nodes. This means he requires no further treatment, other than to see his urologist twice a year for the next 2 years. No chemo, no radiation, and no further surgery - the best news ever! It's been rough at times, but the outcome made it all worthwhile. Today we are celebrating our 39th wedding anniversary! Life is good Sorry - I keep forgetting about chat, but I will make a point of getting there! Thanks to everyone in the KD Forums for all of your support, it has meant more than you can imagine and I am very grateful. xoxo