ALS Patient, young woman...mid 30's I need your advice!

[Ernesto]

I am working with a woman in her mid 30's with ALS, I see her at least one time per month, maybe twice. As you can imagine, everytime I see her, she is declining. Our sessions have been light hearted and I believe relaxing to her but as her condition worsens she is confiding in me about her home life and her situation in general. I feel I do not have the training to offer her the professional assistance that she most likely needs at this time, other than being a good/active listener. She may all ready be seeing a professional (medical and/or spiritual) with training in this area, I do not know, but I will ask her about this the next time I see her. I will approach a friend of hers who also happens to be a doctor about my concerns.

Have any of you been involved in a situation such as this, if so what advice can you give me. I feel I can adapt the massage sessions to accomodate her condition, that is not the problem. I guess it is her emotional and my emotional well being that worries me. Hopefully the doctor friend will be able to provide some guidance for the both of us.

I will check to see if there are local ALS support groups in our area, I will also go on line and search for ALS groups and chat rooms, as I am sure they have been down this road before. If any of you are aware of such support groups that will be most helpful. I will also check with the local Hospice programs in our area.

Any advice is appreciated

 

[Pompal 09.]

I'm very sorry to hear about this. This is going to be tough. ALS is a really really raw deal.

If I remember right, ALS starts in the SI joint and moves cranially, eventually rendering the whole spine motionless, in a state of slight forced flexion. This client will need to work with you very closely and you'll also have to insist that she see a good chiropractor (and you two should be in frequent contact) to at least maximize the ROM and prolong the amount of time she'll have that ROM. It will be very important that she stays in EXTENSION as much as possible, and avoids flexion(!) So, I wouldn't do much on her back. I would instead do pecs and abs, and I would give her exercises such as back extensions (or better yet, have her orthopedist or chiropractor give her the exercises). At least, that's what I would do.

Hope that helps! Best of luck to you and your client!

 

[DAR]

Movement training is a critical piece for managing the progression of ALS. She needs to work with a chiro and probably also part-time with someone qualified to teach her movements/exercises appropriate for maintaining her mobility. The method is not really important, it could be yoga, martial arts, gymnastics, functional fitness training, etc. It just needs to be something she enjoys enough to practice consistently (DAILY) on her own initiative. Her health pros and movement instructors should be in contact regarding her condition so their efforts can be coordinated to maximum effect.

How much of this you wish to share with her is up to you. Don't feel the need to be all things to her... she needs to lead a team of people who are all working together to help her. Do what you can do and let others do what you can not.

Best of luck!

 

[freeekle]

Your presence is a lot

I worked with a patient with ALS (very advanced seforum.xxxes) for over a year.

The fact that he was unable to communicate verbally to me made our sessions even that much more challenging. I focused only only relaxation and being a comforting touch during his final months.

I know it is hard watching the condition deteriorate but I found myself more and more grounded each time. Because I like to think of myself as a 'facilitator' of healing, and not a HEALER I was very humbled by the whole experience.

I agree with the other posts that there should be a TEAM around her. Your recommendations are just recommendations but they could mean a lot to her.

Good luck and remember to do things that will keep you focused on professionalism, quality and attentiveness. When you are working so close with people it can be easy to let the lines of professionalism blur.

If you want to talk more in depth you can contact me directly. I have been working with special needs for 6 years and providing massage to that specific group of clients for 2.

Stress Less,

 

[SureThingBATMAN]

I agree about the additional support system but don't underestimate how your listening can be very helpful to her.

Something you said stuck out:

"I will approach a friend of hers who also happens to be a doctor about my concerns. "

Please don't forget about confidentially issues.

 

[Katrina]

Hi Michael,

I wanted to mention Chronic Lyme Disease as a possiblity in regards to ALS. There are some physicians who specialize in chronic lyme treatment and one specifically in CT who is starting to see many patients who were previously diagnosed with MS who are responding to antibiotic treatment and are testing positively for lyme and tick borne coinfections.

Testing for Lyme is not 100% accurate and most physicians run what they call an ELISA test first which just tests the body's level of antibodies to the infections. In the case with chronic lyme what they are finding is that some of the sickest people are testing negative with the ELISA because the body is not producing antibodies to fight the disease.

There are some common misconceptions in regards to lyme, such as you have to have a bull's eye rash if you have contracted lyme. This is not true.

I don't want to get into all of the details about this here but just know that the medical establishment at large does not understand chronic lyme and in my personal opinion, and some physicians there is a strong possibility that some ALS and MS patients may be untreated and undiagnosed cases of chronic lyme disease and associated co-infections.

There is a great documentary that is being shown now across the country called "Under Our Skin" and it represents both sides of the story in regards to chronic lyme and the controversy. Open Eye Pictures is the website if you want to view the trailer. You can find them by googling, I don't want to put a web address here for security issues with the board here.

I share this information because I hope one day they are able to solve the mystery of what causes ALS and MS and as well, I pray that the medical establishment understands the extent that Lyme disease and destroy a person's central nervous system so that more people will get proper diagnosis and treatment.

If you think at all this could be a possibility for your client you may want to mention it may be a subject to explore with her physician and to research herself.

I hope she finds some answers soon...