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How are you dealing with Kennedy's Disease in your life?
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Registered: 10-22-2005
Posts: 142
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When I was at my "crampy-est" I had an electric blanket folded in half under the bottom sheet. It was frustrating to try to sleep so warm that you were sweating, but it sure beat cramps. As soon as I try to sleep "cold", something will cramp big-time to show me the error of my ways...
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Registered: 09-28-2005
Posts: 654
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Good afternoon, we are snowed in again and cannot go anywhere for a few days.

Michael Bingham sent me an emails on a few topics that he wanted me to share in our chat room. I missed the last chat and thought I would share the information in our forum since it might be of interest to many now and in the future.
___________________________________

I'd mistakenly assumed that the CAG repeat was actually a linked short chain CAG polymer rather than an unlinked repeat of usually > 25 separate molecules.

I was also intrigued by the change in physical chemistry which allows some of the carrier/donor's DNA components of A : T (keto purines) and C : G (keto pyrimidines) to presumably split and reform as CAG

On other KD related topics, I've a couple of items of practical experience that may be of interest to the wider KD fraternity as I've yet to make the chat rooms.

1. Excess saliva production - night time swallowing/choking problems.

For some time I have used anti-inflammatory soluble 1 pd 50mg dichlophenac sodium tabs and some months back my physician prescribed a 1 p.d. anti-reflux "omeprazole" being 20mg Losec M.U.P.S. (Astra Zeneca) as a stomach lining coating. I have found when taking Losec with water at night my saliva levels have markedly reduced and last year's onset of the scary awakening choking problems have'nt occured for 4 - 6 weeks.

I've informed my neurologist who plans to suggest its use by the UK's scant KD population and is also considering it for MS sufferers.

2. Leupro and gose relin - suggested anti- KD candidates.

I was diagnosed with atypical prostate cancer in Oct 2007. PSA and testosterone levels were successfully reduced and controlled via a 3 months NHS outpatients Urology clinicical trial using sub-cutaneous injections of 11.25 mg tripto relin. Tripto relin s.c. injections are not finally approved for UK general use, so my treatment continued via three-monthly intra-muscular injections. It is a viscous product after pre-mixing prior to injection. On three occasions its "thickness" required the pack-supplied needle to be changed to a larger diameter version so in July 2010 my treatment changed to a subcuteaneous stomach injection of gose relin which has worked OK.

However, last February (fortuitously?) I had a KD related fall when my right knee collapsed involuntarily and I badly damaged my right ankle's ligaments and outer tendon. There was no bone damage but the X Ray clinician noted a loss of bone density. I recalled this may be a side affect of tripto relin and other relin family hormone derivatives. A detailed DEXA bone scan showed my spine was OK but the hips showed values in the osteopenic range, the right being -2.1 and the left -1.7. (I hope someone understands the significance of these values?)

To counter this demineralisation problem I'm now taking 2 p.d 50 mg calcium/vit D tabs plus a weekly oral bisphosphonate (alendronic acid) 50 mg tablets.

So use of relin derivatives for KD could have dramatic side effects and speaking personally the last thing we KD sufferers need is a brittle bone problem..

3. Flight compression knee stockings
It may interest KDA members that only recently I have discovered that occasionally wearing flight compression knee stockings alleviates the pain/stiffness in my calf and lower leg muscles.

Sincerely
Michael Bingham
Registered: 09-17-2010
Posts: 56
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I found KD 2 years now, Leuprolin works on me, but I inject this every continus 3 month and stop 1.5 month until the testosterone level coming back, this last almost 1 year,I still have the sex 3 times/month, no too much change for KD progress, hope keep this way until I finish stem cell injection in 2012 after it become no risk
Registered: 09-17-2010
Posts: 56
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at nov 2010, the first guy 52 years old , KD man inject stem cell in china, he still alive, result say not bad, walk longer, I just wait , if nothing hapen i will have this injection
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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Swallowing and Speech Problems

Hi my name is Silvano Tonini am 63 years old and live in Australia. 3 years ago I was diagnosed with Kennedy's Disease and all tho my mobility is still ok.

I was developing speech and swallowing problems,4 months ago a friend told me about Stem Tech I started taking Stem Enhance and Stem Flow within one month my speech and swallowing started to improve. Now 4 months later I can talk and swallow with no problems, my quality of life has improved out of sight.

If you could pass this information on to other people with Kennedy's it may help them as much as it has helped me. Thanks for the work you are doing

[Note from Bruce: I have not heard of either of these products, but felt I should pass this information along. If you have any experience with either of these products, please add your thoughts and comments below. Thanks]
Registered: 08-02-2009
Posts: 206
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quote:
Originally posted by Bruce:
Swallowing and Speech Problems

Hi my name is Silvano Tonini am 63 years old and live in Australia. 3 years ago I was diagnosed with Kennedy's Disease and all tho my mobility is still ok.

I was developing speech and swallowing problems,4 months ago a friend told me about Stem Tech I started taking Stem Enhance and Stem Flow within one month my speech and swallowing started to improve. Now 4 months later I can talk and swallow with no problems, my quality of life has improved out of sight.

If you could pass this information on to other people with Kennedy's it may help them as much as it has helped me. Thanks for the work you are doing

[Note from Bruce: I have not heard of either of these products, but felt I should pass this information along. If you have any experience with either of these products, please add your thoughts and comments below. Thanks]


StemEnhance and StemFlo are scam products. They are based on a form of blue-green algae that is rumored to stimulate stem cells. There is no proof that they work, and they have been found to contain toxic blue-green algae along with the allegedly beneficial algae. Even worse, they raise false hopes because they are sold expensively through a multi-level marketing (MLM) scheme. Most likely Mr. Tonini is part of the scheme.

For the complete lowdown on these products, refer to the following web pages:
http://www.mlmwatch.org/04C/Stemtech/stemtech.html
http://www.drdalepeterson.com/...d879733af43e7cd.html
http://bayblab.blogspot.com/20...ian-drapeaustem.html

This message has been edited. Last edited by: Dan B,
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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Below is an email I received today. Those of us living with Kennedy's Disease reach out in many different ways.

"Hello friend,

My husband is suffering Kennedy Disease. He is 48 and I am 47 years old. He is so weak, I feel very sad. We are in Beijing, China. My husband's older brother is also KD, 59 years old, he is more weaker, and walks with a stick. My husband works in an office everyday, tired. His brother retired in his 50 years old. My husband takes Creatine everyday, and he also takes Chinese medicine, herbs. Life is very hard for my husband and I. I know all KD families are the same. Life is disruptted because of this disease. I write this mail is for telling my sadness to the people with the same fate.

Haiyun Zhao
Beijing China"
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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DUTASTERIDE! AVODART! [I am moving this post to Medications]

I have been taking this drug for ten months now and found it to be very helpful. It seems several others have had good success with it also. However, there are the exceptions.

A friend wrote: "I am considering stopping it, I have had my worst 9 months ever. I have pain in my hands which I have never had before and I generally seem to have much less energy. I know everyone can react differently but are you aware of anyone else who has stopped this medication for side effects. Any comments welcome."

I told him I would post his question on the forum and my Living with Kennedy's Disease blog. So I am asking all of you what your experiences have been with dutasteride. Thanks for your input.

This message has been edited. Last edited by: Bruce,
Location: San Luis Obispo CA
Registered: 10-10-2005
Posts: 161
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I've been taking Avodart for several years w/o any unexpected side effects. I believe it has helped me and it did restore some capability. My KD is still progressing but I'm still ahead of were I was several years ago as far as fatigue goes.


=================
email:rheitzman at gmail
Registered: 09-17-2010
Posts: 56
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merry christamas and happy new year, I amd 40 years old and find SMBA two years, in the begaining I am feel frastrated. right now iam ok, I use leuprilin Q10, B100, curcumin and body exercise for 7 months, it is strong one to reduce your sex ability, for my walking just feel better, very good for you choking, during that perod almost no choking and swallow problem, because it is injection , too expensive not cover by medicare in canada, so i begin my dustrate, Q10, B100, curcumin for another 6 months, but i can fell my breast have alittle bigger and alittle pain,choking happen some time dustrate is good and it do not even reduce sex ability , for the point it more acceptabe than leinprilin, check with Dr, say no problem, under Dr saying i change back to lenprilin one month choking gone and breast pain gone, so i change back to dustrate again, walking and clibing stair is same as before , i will keep this way to new drug coming out.
Registered: 09-17-2010
Posts: 56
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DUTASTERIDE/ AVODART side effect for me is breast became alittile bigger and a little pain and not reduce your sex ability, twice /a week sometime choking happen. walking ability better

Leupro reduce night time swallowing/choking problems to minimum and reduce to sex ability twice /3 week, no breast pain/and bigger happens
walking ability better

all the above for me , i do not know other people feel.
Location: United Kingdom
Registered: 05-26-2012
Posts: 1
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My dad has Kennedy's disease and now my uncle has recently been diagnosed. I found out when i was very young at 8 years old and was very confused on what was happening. The doctors we saw here in the UK, knew little about this disease and said that my father would die of it and he only had a few years to live.

I was too young to understand what was happening, my mother at the time who had separated from my dad, tried to prepare us the best she could.

I grew up, trying to prepare, seeing my dad get worse and have found it extremely hard, especially when he falls over and is unable to get him self back up.

We were later told that the doctors were wrong and that it was a condition that he would live with for the rest of this life but also me and my sister carried this condition and it would be passed on to our children.

I am now 21 years old, and seeing my dad the way he is, is the hardest thing. My dad still wont ask for help. He doesn't exercise regularly and therefore is a fairly big guy, making it even harder for him to get around and when he does fall, he falls pretty bad. It takes three of us to help him to get to a seat or to his feet, as we cannot lift him on our own and he wont accept anyone else's help. He stubborn and almost embarrassed.

We have had choking incidences and an ambulance has had to be called, broken bones and hundreds of bruises.

I hate to admit it but the best way i deal with this whole situation is not seeing him often, as i cannot cope seeing him the way he is.

I am worried about the future.

Annoyed that my dad isn't trying to help himself.

Worried about passing this on to my children - as far as im aware the uk do not allow you to remove genes for medical purposes.

And annoyed at myself that it has taken me this long to really look into this disease and its only now i am trying to cope with the fact that my dad has KD.

Thank you for letting me tell the truth
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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Stephanie,

Thank you for sharing your thoughts on what it has been like "living with Kennedy's Disease."

Frustration, anger, guilt and a feeling of helplessness are all emotions that many of us go through including family members. I have written many times that I feel family members also go through the highs and lows of living with the disease as much as the person with KD (father, husband, or child).

Reference some of the personal conflicts you are experiencing, perhaps my "Living with Kennedy's Disease" blog ( http://kennedysdisease.blogspot.com/)might help. There are several hundred articles reflecting personal experiences, hope for the future, care-givers, carriers, etc. as well as some excellent comments from readers.

Reference your concerns about children, I would direct you to the following articles:
1. Charles was part of His plan for me
2. Genetic Counseling Helps Answer Many Tough Questions

Reference some other articles that might be of help:
3. Can women have KD?
4. Living with Guilt
5. The Nine Stages
6. Learning how to just 'be there'
7. The Maturing Process

I hope one or more of these articles as well as others might help.

One thing to remember, Stephanie, most of our struggles are internal battles focused on should's and shouldnt's as well as guilt, anxieties and frustrations. Let go of your past and start living in the moment. And, when you are feeling a little down or a situation seems out of control, remember that 'this too will pass'.

And, from my perspective, there is nothing more beautiful or wonderful than holding a loving child. This comment comes from a 'great grandfather'.
Registered: 07-02-2007
Posts: 4
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Stephanie
I live in the UK and have KD. I have three daughters in their 20s who have all been tested positive as carriers but are not ready to start a family. However, when I was tested positive in 2004 we were referred to a genetics clinic. It appears that Guy's Hospital will now consider PGD for KD. I am not sure of the technology but it does mean you could have KD free cells implanted. The procedure is that you need to get you GP to get you tested as a KD carrier. The GP can then refer you to the PGD centre at Guys. Alternatively the GP can refer you to the local genetics centre. I hope this helps.
John
quote:
Originally posted by Bruce:
Stephanie,

Thank you for sharing your thoughts on what it has been like "living with Kennedy's Disease."

Frustration, anger, guilt and a feeling of helplessness are all emotions that many of us go through including family members. I have written many times that I feel family members also go through the highs and lows of living with the disease as much as the person with KD (father, husband, or child).

Reference some of the personal conflicts you are experiencing, perhaps my "Living with Kennedy's Disease" blog ( http://kennedysdisease.blogspot.com/)might help. There are several hundred articles reflecting personal experiences, hope for the future, care-givers, carriers, etc. as well as some excellent comments from readers.

Reference your concerns about children, I would direct you to the following articles:
1. Charles was part of His plan for me
2. Genetic Counseling Helps Answer Many Tough Questions

Reference some other articles that might be of help:
3. Can women have KD?
4. Living with Guilt
5. The Nine Stages
6. Learning how to just 'be there'
7. The Maturing Process

I hope one or more of these articles as well as others might help.

One thing to remember, Stephanie, most of our struggles are internal battles focused on should's and shouldnt's as well as guilt, anxieties and frustrations. Let go of your past and start living in the moment. And, when you are feeling a little down or a situation seems out of control, remember that 'this too will pass'.

And, from my perspective, there is nothing more beautiful or wonderful than holding a loving child. This comment comes from a 'great grandfather'.
Registered: 07-22-2013
Posts: 3
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Hello,
I am 36years old from Greece.
When I was 16 years I noticed hand weakness and
doctors told me I had SMA.
Today I have progressive weakness in my right hand and low sperm count and mobility.
I did gene test for SMA and turned to be negative
and I will have a BSMA gene test.
I have only hand weakness, low sperm count and mobility and no others symptoms. I play football, basketball, weight lifting, breath, chew etc normal.
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