Parkinson's Disease Community

My mother has had PD for approximately 8 yrs. She is 86 years old and nearing the end of her life. She has lost all mobility, can't really speak any longer and is now experiencing increasing difficulty in swallowing. Is it possible or likely that she will lose all ability to swallow? If so, will she need to be fed through a tube or I.V., or is it likely that her body will shut down at that point? Neither she or I want to prolong her life needlessly, but I am wondering if her body will continue to function if she loses all ability to swallow. How common is it for PD sufferers to lose the swallowing function?
Thanks very much.

Hi, irisson.
I am sorry to read about your mother. The loss of ability to swallow is not uncommon in people with very advanced PD. I would suggest you involve Hospice in your area to help you with these difficult decisions. They are phenomenal people and will help you and your mother with many things. They will also help with the decision of IV or Feeding Tube (FT) for nutrition and hydration. I have reviewed criteria for a feeding tube in a post this week, but in general an IV is less distressing in the short run, while a FT is more convenient over weeks and months. She may wish to receive IV hydration each week, and forego the FT, but placement of a FT is not arduous, and the tube is not cumbersome.


Remember, most people with PD do not lose their memories and ability to think - your Mother may have people to see, and things to discuss with family, friends and you. Take some time, and give her an opportunity to share.

Kind regards,

Hello,

My husband is on quite a few PD meds, including Sinemet 50/200 (12 a day), 25/100, Azilect, Artane COMTan, Amantadine, and Seroquel. At times he experiences dibilating episodes that include: face freezes, profuse sweats, 90 degree arm angles, extreme and severely painful side tightenings, throwing up, and toe curling. Recently said that breathing is difficult during these times. Any idea as to what may be causing this and making these episodes so severe? They can last anywhere from 15 minutes to a couple of hours and just leave him exhausted and in lots of pain. Another question I have is if this is a chemical imbalance or is this a product of all the meds he is taking? Thank you very much.

Anon_13036,
I am sorry to read of these difficulties. The sweating episodes, toe curling, and muscle cramps are most likely from "wearing-off"
from medications. The sweating usually results from a rapid decline of a high blood level of levodopa to a low level (levodopa is the active ingredient in Sinemet). The nausea is likely from a "peak-dose" of medication and is also associated with abnormal wiggling or muscle spasms. I think these are the arm movements and the face freezing. The breathing difficulty can occur in either or both of these states.

I do think your husband is on a lot of medication, but it may be an appropriate regimen. Here are some things to consider:

Artane is a medicine for tremor. It may not be necessary any longer, and may cause difficulties with memory and bladder emptying. It may aggravate hallucinations.

Seroquel is for treating hallucinations. Perhaps this may not be as necessary after stopping Artane, but do so with your doctor's supervision, by decreasing it by one pill per day each week until it is stopped.

Amantadine is a drug I use to treat dyskinesias and wearing off, and usually only one or two a day.

Comtan should be taken with Sinemet - but no more than 8 Comtan per day.

Try taking the Sinemet CR at regular (every 4 hour intervals). That would be 2 tablets 6 times a day, and hold on the regular sinemet. (Break one of he CR tablets in half - but take both halves - to get a bit steadier blood level.

Good luck,

Dr. Stacy,
Please read my story that follows & let me know if you think that I should find a doctor & get checked for the possiblity of PD? How strongly do you feel that this is possibly early-onset PD?
I am very concerned about multiple systoms that have developed over the past 3 to 4 yrs. I have a fear of "overreacting" & looking foolish. I am 33 yrs old & it is effecting my daily life significantly.
I started taking notice about 4 yrs ago & went to my primary doctor, which was unusual I avoid the doctor office. I only went if I was sick for more than a week. My symptoms at that time were: tremors, nightmares- extremely life like & traumatic, aching shoulder/aching hand (coming & going), exhausted all the time, easily aggitated, no motivation. The tremors started long before and progressively worsened & the other symptoms gradually started; not all at once. The doctor asked questions & examined me. He ordered blood work, MRI, another scan that required dye & told me that he did so to rule out other possibilities. In the same breath he told me I suffered from depression & put me on an antidepresent. (First time ever). At follow up visit I had slight improvement with my mood. My blood work & MRI came back fine & my diagnosis was depression. He told me that I was imaging these things happening to me with exception to the tremors. FYI: When I had the MRI, the tech told me they did not need to do the dye one.
After a lot of medicine changes, I found a psychiatrist after a few trial & errors over several months finally got me to the best I had felt in a long time. The meds are: Adderall 20 mg twice daily, Adderall-XR 30mg, antidepresent. (about 2 yrs ago)
A few months ago I woke up to my husband shaking me & covering my mouth. He said (and I remember doing this in my dream as well) that I started screaming in terror and thrashing violently & he had to cover my mouth in fear our children would wake up. I told him it was real and I was so scared that I trembled until I fell back to sleep.
As for my tremors, I get asked all the time if I'm nervous/feeling ok. They are in my hands, legs, & somtimes my tonque. They never occur all at the same time & are random as to which side of my body. If I am holding a cup my drink swooshes to the point that I spill it on my self (not always). This occurs much more frequently these days.
The muscle in my upper back/shoulder randomly hurts for days at a time. (feels like whiplash) At work, I sometimes have pain when focusing on trying to control my mouse to click on a specific item. I have difficulty trying to seperate pages when they are stuck together & writing is messy sometimes (hurts).
Most recently, there are instances where I suddenly become aware that I'm tense. LIke I'm preparing for a car crash. Also, I always had an excellent memory & never had trouble with it, in fact, it was one of my greatest strengths. Lately, I can't remember things and it's affecting my job performance. I constantly ask the same questions because I can't remember and on occasion don't remember asking the first time. I often have difficulty focusing and that's after I've taken my three doses of Adderall. Also, I have been biting my checks (so painful) when eating. At first I thought nothing of it, but then it became a regular event. Sometimes at night I feel that aching discomfort feeling & switch positions. Lastly, I feel at times that after (occasionally during) an arguement I realize (but don't tell my husband) that I was completely irrational and temporarily had lost my mind.
One more thing to note, everyone has commented on my extreme weight loss (smallest I've ever been; size 2). I dropped about 30 lbs (average weight over yrs) in 2 months without changing my diet or exercising. Exhaustion is really bad. I can't sleep at night but in morning I have extreme difficulty getting up. Can stay in bed all day at times.
Sorry for the length of story.

Hi, stacymacs
The dreaming and weight loss may be side effects of the adderal. I think you may wish to talk with your doctor about these symptoms. I do not think you have symptoms of PD, but your doctor can talk with you about your tremor, and whether you should see a neurologist.

I have PD about 5 years, 68 years old and currently taking carbo/levo 25-100mg up to 12 times daily and Selegiline 5mg twice daily. Sometimes, when I "hit the wall," instead of taking my meds, I can take one or two "Life Savers" and within 15 - 20 minutes feel just as well. Any suggestions?

My grandfather is 75 and was diagnosed with PD about 4 years ago. He is currently on meds to help slow the progression. He has had terrible tremors until June when he was diagnosed as a diabetic. Since then he has had very slight tremors occasionally. He is still slow when he walks and shuffles his feet, he is falling backwards more frequently and he is drooling more frequently among other things. All of these things I knew to expect along with memory loss but I am not sure at what point forgetful stops being a sign of old age and becomes a part of PD progressively taking him. When he was visiting for Christmas I noticed several times just how forgetful he has become. He would try to make a joke of it and say "Don't ever get old girl. You'll start to fall apart." But I became concerned after several times of him saying he was going to lay down for a while but when he would leave he would go to the kitchen instead of his room which is on the opposite end of the house. He told me not to worry and that he just gets turned around sometimes. He says that it's all part of getting old. Should I be concerned and if so what is the best way of dealing with the situation, talking to Papa or to his doctor?

Hi, Papasgurl,
Thank you for your note. I think the memory issues you describe may be due to a number of possibilities. Cognitive changes from PD may be what you see when he is not able to make a joke. This is similar to what you see when he is moving slowly. This symptoms may both respond to medications, such as levodopa. The next possibility can be from dementia or depression or stress. This is sometimes difficult to determine, and I would suggest that you have a conversation with your grandfather. Tell him of your concerns, and that you would like him to ask his doctor if increasing his medications could improve his memory. If that goes well, and possible, you may wish to ask if you could accompany him to the next appt.

HELLO, I'M MALE,64. I'VE HAD PD FOR 12 YEARS. FOR THE PAST MONTH, I'VE HAD A COUGH. IT COMES FROM MY THROAT. THERE SEEMS TO BE SOMETHING IN MY THROAT.FLIM OR FOOD IS MY GUESS. IT TICKLES MY THROAT. I HAVE TO COUGH TO MAKE IT GO DOWN. THE ORST TIME IS WHEN I EAT. ALSO, WHEN I DRINK LIQUIDS I CHOKE AROUND THE 2nd OR 3nd SWALLOW. I HAVE TO COUGH MULTIPLE TIMES TO CLEAR MY THROAT.

I AWAIT YOUR ANSWER. THANKS, PHIL SCHEIB

Dear Phil
There are a number of swallowing or coughing problems that are associated with PD. I have found a careful evaluation by a speech therapist the most effective way to sort this out. I would suggest you contact your physician for an order to have a speech therapy evaluation, and see how it goes. I would be happy to try to answer your question with that information.

Dr. Stacy,

I am hoping you can help me with some advice. My 49 year old boyfriend was recently diagnosed with Parkinson's.
His symptoms at this point was some pain, rigidity, and immobility in his left arm, and fairly persistent headaches as well.
His neurologist suggested a physical therapy regime which he has been on for a couple of months now. While his arm hasn't improved much, his headaches have gotten extremely severe, to the point where he is barely able to function a lot of the time.
We are at a little bit of an impasse right now about how to address his pain.
Is this something you have seen at all, and would you have any suggestions for us?
I would be most grateful for any advice you can give us.

Thanks!

Dear Grace
Headaches in early PD are fairly uncommon, but are usually from low blood pressure. I would suggest you ask the PT to take his blood pressure sitting and one minute after standing at the beginning and end of a session, and for you to do the same when he reports that his headache symptoms are severe.

If this is not a blood pressure symptom, I would ask his Neurologist specifically about this bigger problem. An evaluation may include an MRI of the brain, blood work and a lumbar puncture (spinal tap).

If the work-up is negative - that is good, except for the pain - would consider starting him on medications for PD, in hopes that everything gets better.

Thank you so much Dr. Stacy.

So it seems like the headaches might be a separate and possibly bigger problem after all then, correct? Outside of the Parkinson's I mean.

Thanks so much again. I appreciate your taking the time to respond.

Grace