PSP Association
5,299 members7,299 posts

Could someone explain what a peg is?

I live in Mississauga Ontario Canada. My husband was given the diagnosis of PSP after several years of searching for answers concerning his health issues. I figure he has had it now for 8 years. He has been in a Nursing Home now for 2 years. Last fall he began experiencing pain in his arms and hands which seemed like muscle spasms. With his limited speech ability we tried to put the pieces together as to what was going on--- a burning, throbbing and at times grabbing pain. He spent 3 weeks in hospital where they tested for several things only to find out what it isn’t. One Neurologist had described it as neuropathic pain. He has had 2 rounds of Botox injections to help with spasticity and hopefully pain but as time goes on this pain is becoming harder to control. There seems to be no consistency to when it occurs or how long it will last or the severity of it. As a result it is a guessing game as to what pain medication to use and when to administer it. Right now he is getting hydro morphone 3 times a day and up to 2 extra injections if needed. As soon as they change the schedule of the medication , it works for a day or two and then it doesn’t seem to be effective enough and we’re back to square one. He is a diabetic 2 and has neuropathy in his feet but no one has said that this is neuropathy in his hands. Would love to hear from others if you have heard of similar situations and any suggestions for help. It is awful watching him suffer like this--- you feel so helpless.

1 Reply

Hi Springm ! Yes. It is probably one of the most heart wrenching and stressful situations to be at a loss to help someone, especially someone you love ! PEG in the context that I believe you're referring to stands for Percutaneous ( through the skin ) Endoscopic (placed with the assistance of an endoscope used to assure correct placement ) Gastrostomy . A surgical procedure is performed to place a G Tube ( all sorts of terminology are used) through the person's abdominal wall into their stomach for different reasons, but typically to provided nutrition when the person is unable to ingest food by mouth as in the case of PSP if they are no longer able to chew/swallow successfully. These are also commonly called feeding tubes. Medications can also be administered through a feeding tube.

The decision to have a feeding tube or not is a big decision and should be tackled by you and your husband and hopefully a caring physician who can explain the pros and cons of having a G-Tube placed. In the best case scenario, your husband is still able to make his wishes known to you after all of the information is presented to him and he can make an informed decision. Hopefully both you and your husband already have Living Wills where you have stated just what measures you want used in the event of certain medical situations. Hopefully you both also have completed Health Care Proxies which state who can make decisions for you in the event you are unable to make them for yourself; those decisions related to health care interventions. I don't know what the legalities are in Canada related to these issues, so what I'm saying may not even apply there as I'm in the U.S.. I would be surprised and shocked to learn that such an important decision wouldn't be based on the patient's wishes.

Regarding your husband's pain , has anyone suggested using a form of delivery of pain med which is in patch form; delivering a continuous dose of pain medication through the skin? Fentanyl patches are what is often used here . Of course, you, your husband, and the doctors would be in a position to know if this would be the way to go. Having diabetes really makes all of the treatment choices more complex! Muscle relaxants can be helpful also.

I wish you all the best in finding solutions that would aid in helping to increase your husband's comfort level. It's obviously one of the most important and difficult challenges we have to deal with . Take care and push to get the answers that you need.


You may also like...