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David

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Your help participating in an online survey is needed.

The survey takes approximately 30 minutes to complete.

Please read the following to ensure you're comfortable with the subject content of the survey and meet the eligibility requirements.

This survey does not collect personally identifiable information and is completely anonymous.

Study Homepage: http://www.alssurvey.org/

Eligibility:

ALS participant
To be eligible you must:

  • have a diagnosis of probable or definite ALS by a doctor,
  • have seen two or more doctors regarding your symptoms of ALS,
  • have been diagnosed with ALS by one or more doctors,
  • have been diagnosed by a doctor who works at a MDA/ALS certified
  • center, ALS Association certified center, clinic, or university, and
  • be between 18 to 80 years of age.
  • Click here to join the survey if you have been diagnosed with ALS.

Romantic partner of a person diagnosed with ALS
To be eligible you must:


Study Overview:

Carisa Bielecki and Ryan Howell, PhD, at San Francisco State University have developed a survey about sexuality in ALS. This study is IRB approved by SFSU. The goal of the survey is to learn more about sexuality in ALS and to improve the quality of life for persons with ALS and their romantic partner. The information gained through the survey will be used to evaluate sexual behavior, disease progression, quality of life, and to help foster ALS research. For persons to participate they do not have to currently be with a partner.

Study Duration:

The study will run tentatively until March 2010, depending on how many participants are enrolled after 3-6 months.

Study Abstract:

This study aims to determine when sexual satisfaction, subjective sexual well being, and quality of life for persons with ALS and their romantic partner/caregiver is likely to decline and the extent to which decline occurs, as compared with before date of onset. This is an anonymous online survey. Patients' disease status will be correlated with their sexual health status. Partners' health status will be correlated with their sexual health status. The patient's disease status will be assessed by the self reported ALSFRS-R and their sexual health status will be assessed by the Sexual Self Report Scale (developed by Dr. Wasner et al. in Sexuality in ALS and six sex/intimacy questions from the ALSQOL), subjective sexual well being (four questions developed by Dr. Laumann et al. in A Cross-National Study of Subjective Sexual Well Being .), and quality of life assessed by the Satisfaction with Life Scale (Diener). The partner's health status will be assessed by the CBI (Caregiver Burden Inventory) and their sexual health status will be assessed by the same questionnaires as patients.

Sexuality in people with amyotrophic lateral sclerosis has not been thoroughly researched. A person with ALS can continue to experience and express their sexuality. The disease does not directly, but indirectly interferes with sexual functioning (Wasner, Bold, Vollmer, Borasio, 2004). Sexuality influences a person's quality of life and should be regarded as a topic of concern for the patient and caregiver (WHO, 2002). Though the disease presents many complicated issues for the caregiver/romantic partner and patient to deal with, sexuality continues to be an issue of concern and significance to them and should be addressed accordingly.
 
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1Adam12

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PALS
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03/2000
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US
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ca
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fresno
Anyone want to discuss?
 

t34gib

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Sure, let's discuss this. Who wants to start?
 

kelly

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Zzzzzzzzzzzzzzzzz..
I took the on line Research Study...hope my info helped.
My ZZZZZZZzzzzzz's were for the need to sleep as a caregiver.
 
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SteveS

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Joined
Sep 23, 2008
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Loved one DX
Diagnosis
11/2008
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CA
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BC
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Campbell River
I guess like all things sexual most don't want to discuss. Is old attitudes and beliefs I think anyways. Hopefully without embarrassing her I will begin to discuss this as it is an important part of any couples lives. I will say (without too much detail, to spare the rest of you) that it was one of the first things that changed in our household. At 43 I wasn't ready for this part of my life with my wife to be over, but it is and has been for quite sometime. Seems men and women deal with stress differently and our sex life was an early casualty. I have tried to discuss this with the wife a few times but don't want to push the issue. I guess at the end of the day, my wants and needs are not really that important anymore and when or if she feels that she wants to discuss or even try I will be there. I do miss the closeness and comfort that it brought but again, don't want to bring more stress and strife to our already upside down lives.
 

Marjorie R. Wilcox

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10/2007
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New York
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Richmondville
Rick is the PALS, me the CALS. As his ALS progresses I am sure our lovelife will change.
We have been married only 2 1/2 years so the bloom isn't off the rose, or the honeymoon isn't over, however I want to put it. We are 60 and 61. Our newfound love has made us feel young again.

There are adaptations that need to be made if he feels weak or tired, but his desire or his performance is the same as before progression was ongoing.

I think that lack of interest in sex is only a pattern of a longtime relationship that leads to monotony. The romance fades if you don't work at it and make the "moves," interesting and new. It is a challenge to keep the spark going.

I don't think that any disease can affect your sexual relationship unless there is a man's impotence or disinterest in either partner. Also, I believe that if desire is lost, you can rekindle it with effort and a co-operation.

A note of interest. I was married 38 1/2 years to a highschool sweetheart and had 6 children, now grown of course. Sex was all we had that was good, it seems.

I think your attitudes on sex are within yourself. Some people think that no one does it after 40. I was one that thought that. You know, our parents do THAT?
 

rose

Extremely helpful member
Joined
Mar 29, 2008
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2,925
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DX MND
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7/2008
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Maryland
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Anytown
As the PALS, I've hung onto the promise that this disease at least does not affect desire and ability. I hope this continues to be true. It does take two to keep it on track. He's been as willing to work with my growing lack of strength, as I have been to work with his growing prostate LOL. I would really miss the closeness if this was taken from me too. ..... BTW we're eight years into our relationship.
 

1Adam12

Member
Joined
Jan 22, 2009
Messages
19
Reason
PALS
Diagnosis
03/2000
Country
US
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ca
City
fresno
My turn I guess. The questionnaire made me feel a little violated lol. I just turned 38 and am still functioning correctly - like a teen sex aholic that gets excited when the wind blows. However, there has been no intamacy [sex] in 7 years. This may be the reason for my increased desire. This has affected our relationship in some ways. She's scared plus has no desire, I still mention it 1x/day. Just the other day she asked why my parents were coming over to watch me so often. I replied [joking/sarcasm] 'because I'm having a craigslist girl over for sex' lol her reply 'not on my side of the bed' hm.
 

jojo99

New member
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May 13, 2009
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Diagnosis
01/2009
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US
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ct.
City
hamden
sexuality

I have a form of als i have pma but it seems like my relationship has not changed my wife and i. She is very supportive and she still loves me for the man that i am if the dr. says well no more sex then that is the way it is but until then everything is a go when i took my vows 34 yrs. ago it was for better or worse richer or poorer well i am not rich i am not poor the main thing in that vow was in sickness and in health and i took those vows under gods presence so we go on in life together sex or not.The main thing is the relationship that we have between each other my sickness will not change me and will not doubt about anything . I know that one day they will find a cure for als-sma-pma and any other thing. I may not be here when they do but i know they will i have granchildren and other young family and they may see it after i am gone but thank god in research.I beleive that if you are married or have a relationship with anyone that shouldn't stop you from any kind of desire to want or desire to have sex with your partner it is a vital part of life that is one of man's and woman's way to enjoy life in spite of, if the dr. says no sex then guess what ? I will ask him can i use protection.
thank you for listening or reading this, i can go on and on but i must stop thank you.
 

Al

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10/2003
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CA
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On
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NW of Toronto
I can think of no earthly reason your doctor would tell you no more sex. He might give you trouble if you were into acrobatics and injured your muscles but that's the only reason I could see. As they say, use it or lose it.

AL
 

jimmybob

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Joined
Feb 3, 2009
Messages
36
Reason
PALS
Diagnosis
10/2006
Country
US
State
florida
City
plant city
I took the survey in March. As far as sex with my wife - 5 times in 7 months, but she was rarely the initiator, even when I was healthy. Yeah, "it" still works. Unfortunately, my wife is not coping very well with my disease, emotionally, and she is sucking the remaining life out of me. I informed her I was divorcing her. One thing I've learned about this disease: it brings out the weakness in one's character, and selfishness in one's actions. Luckily, I have the financial means to be cared for, in all ways.
 
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