Unconditional love

[K3ts55]

My heart goes out to all the patients who are suffering with this disease and to all the people in their lives who are caring for them. #unconditionallove. My husband was diagnosed with PSP/Parkinsonism 3 years ago and has progressed rapidly in the past a year to full wheelchair use, barely speaking, problems with swallowing and eyesight. I’ve been thinking about clinical massage at home to help with the stiffness and pain in his arms and legs. Any feedback on how to find a good therapist who has experience in this field? Are doctors prescribing clinical massage therapy and will insurance cover it?

[Tippyleaf]

Welcome to the forum. Helpful to say which country/state you are from so those who have more local experience can share. I am in the UK, massage is not provided by the NHS but some Hospices offer massage.

My husband lived with PSP for 6 years and apart from the last 6 months had a weekly massage which really helped with aches and pains from the falls and also the stiffness. Sadly when the massage therapist who cane to our home went on maternity leave we could not find a replacement. She had adapted to his deterioration and needs over the years but no other therapist would take him on sadly. We moved to weekly Accupuncture instead which was also helpful.

Hope you can find something which helps your husband

Love Tippy

[K3ts55 in reply to Tippyleaf]

Thanks for your feedback and we are located in the US. Blessings 💕

[Christine47 in reply to K3ts55]

You might try checking on the CurePSP forum (SmartPatients.com). Since it is US based there might be someone there who can give you an idea of what you are looking for.

[K3ts55 in reply to Christine47]

Great tip, thank you!!

[Hidden]

I’m in the US. We have to pay for a masseuse to come into the home. It’s worth it. She was giving Larry a full body massage on a table. Help for a year or so then he felt it wasn’t doing much. Various areas on his body became off limits. Seemed to hurt more than help. Took a year break. Resumed about two months ago. This go round she does his neck and shoulders (a real problem area for PSP people) for half and hour. I have her do my feet for half an hour. My feet are in terrible shape. So far it is beneficial. My feet really like it.

[K3ts55 in reply to Hidden]

This is great insight, thank you so much for your feedback!!

[Hidden in reply to K3ts55]

I found the woman who comes to our house by asking friends. She is a daughter of a friend of a friend of mine. An issue for me was getting Larry to a place outside of the home. He had one massage outside of the house. Then I had to get him home after he had been turned into jelly-o. Try googling in your area to see who is around. Ask around. The woman we use also does massages at a spa. She makes more money doing it in people’s home cutting out the spa. She’s not suppose to take her spa clients on privately but has done so with one guy who asked her if he could give her number to friends. Then he called. Not only did he want a massage his wife and two daughters did as well. They are a very athletic family and needed it.

[K3ts55 in reply to Hidden]

Great ideas thank you😇

[AJK2001 in reply to Hidden]

And I think your feet really deserve it Jeff. Your comment made me smile, thank you.

[Dadshelper]

Welcome to the site. A massage therapist will probably not be covered under any insurance in the US but if you can get your doctor to sign off on a physical therapist or chiropractor doing the massage it may. You need to check with your insurance provider to see what they will cover.

Ron

[K3ts55 in reply to Dadshelper]

So it’s been hard to find a massage therapist with the right experience or a physical therapist who will do massage. Thanks for your suggestions!

[golftennisdad]

Sounds exactly like my father. I have a massage therapist go to his home once a week. She tells me that they communicate non verbally and that it relaxes him and loosens his muscles. I have not found that insurance will pay for this.

[susantigner in reply to golftennisdad]

Funny,my husband would never get a message before his disease and I asked if he would like it now as covered by hospice and I got a definitive No! Usually his yes and no get mixed up but not this time. I would love to take his message!!!

[K3ts55]

In caring for my husband and trying to do the right things, I had a meltdown this week. I sent a text to his entire family thanking those who have stepped up and provided support but at the same time it called out those who have been distant. To my continued disappointment I got no response other than his mother. I’m baffled, just don’t understand. Am I out of place to express how I feel? I’m not asking for anything other than for them to reach and let him know how they feel before it’s too late. My family and our friends have engaged more than his own family.