Parkinson's is getting worse...meds seem to do little for relief. Fell this week and was injuried more than I ever thought. Now having active dreams, shaking, memory loss.
It has taken only a month to feel much worse even with speech. Is this normal?
I HA VE PSP NOT PARKINSONS AND IT WILL GET WORSE - I KNOW hat
BUT I TRY TO BOUNCE BACK AFTER EACH SETBACK - FALLS ARE THE WORST THING AT HTE MOMENT
but I know the additional things like bladder and bowel probs really get me down as well and the frustration of no being able to do things for myself like buttons and zips
keep smiling though I know it is difficult
lol JILL
I understand this. Had a difficult fall last friday...and the bowel problems are getting much worse. Ann my Neurologist wants to change my medications.
I had to fly to Dallas, Philadelphia, Ocean City, Maryland, Phoeix and Tucson and at the end of that trip I did not know if I was going to make it.
hang in there Jillian. i'm having big problems with my bladder and bowels. i have a bladder
that has been diagnosed as spastic. and colitis. i found that two rounding or heaping Tbls. of ground flax seed, in a smoothie or cereal. is the answer to my prayers. have been trying different pads to see which works best.
i've been taking a another pill twice a day, for my eyes. and i kept feeling nausea. then i looked at the bottle, and it contained SOY. which goes really bad with Parkinson's
coughing and sneezing and throwing -up can make that bladder behave badly.
Do you think something is affecting your PD at the moment?. Perhaps you have an infection, that can make PD symptoms worse. You should talk to your PD nurse (if you have one) or ring your neuro for advice.
PD is generally a slow progressing condition so It may be worth considering what else might be going on. Have you changed / increased meds? I don't tolerate meds well and felt dreadful for a long time before the correct drug regime was established.
Hope you feel better soon.
Caroline
XXX
I agree Caroline,
So many other things like the weather, digestion, infections and drug changes for other conditions affect the symptoms of Parkinson's. Sometimes infections go unnoticed because people with Parkinson's may not always have a temperature with one. A specialist will be able to advise, but it's worth seeing one sooner rather than later. Hope all is sorted soon,
Sue
I had noticed pre and post dx that I can feel very ill sometimes but no temperatuirrMy recent blood test lymphocytes showed that I have been fighting something which tends to confirm that it is not the PD
or in the light of theories involving inflammation as a factor perhaps it is the PD.
Same thing happening with my husband,he has had a couple of falls,is walking and speech really deteriorated,quite confused,our GP does not think he has PD,our Neurologist says he has ???
My hubby is same as yours with walking , speech and confusion. Been to 5 doctors - 3 said he had PD and 2 said he didn't so don't know what to believe. He has now lost control of his bladder and bowels, dementia has started and no medication seems to be working. Very confusing and it seems to be fast moving for him.
Have either of you seen a Movement Disorder Specialist? They are the most knowledgeable in PD, as well as other Movement Diseases. May be worth considering.
We are currently seeing a movement specialist and he is one of the doctors who says he doesn't have PD. He is only on Sinemet for the PD (which I thinks help some) and Namenda for the dementia which doesn't seem to be doing anything. Doctor is calling it Progressive Non-Fluent Aphasia with Parkinsonisms.
hni i agree a movement disorders specialist is the person to dx u one way or another
e g PSP is sometimes dxd as parkinsons (by mistake) i hav been upbea tsince my dxs as i know i have a problem 8& what to expect
lol jiLL
:
My husband who's 65 has been in hospital since last November, has had aspiration pneumonia. 3 times due to difficulty swallowing, now being peg fed,
Has p/d, depression/dementia, medication not well tolerated,only being treated for depression, waiting for ECT which has worked in the past!
There is a test called a DAT scan which confirms Parkinsons I did not believe the Dr5. but I asked for the test and it shows consistant with Parkinsons
Rely on the neurologist. No questions about this. In fact, see sherrywolz above--a movement disorder specialist has the most training and knowledge. Become an advocate, please.
my pd is worse but they will not up my med,s .
Dennis
Very sorry to read that you are feeling worse. You ask about a rapid change in symptoms and it could be something like an infection.
I find that my symptoms are even for quite a while then take a sudden dip and i need my medication adjusted. Many if not most of the others I have talked to have the same experience.
A treatable condition called normal pressure hydrocephalus is characterized by incontinence, gait disturbances and confusion. It is often confused with Alzheimers disease. I only know about it because a friend's father was diagnosed. PD has its ups and downs but one doesn't usually deteriorate so rapidly. Urinary tract infections and pneumonia often cause similar symptoms and are pretty easy to test for.
Thank you for your hjelpful reply. At the xyphoid is the most pain like someone tapping the xyphooid. Below the xyphoid are the bowels which
make me look as if I am expecting a baby. Constant pain unless I am
laying down. The pain is so bad it prevents me from walking. It is now
beginning to get to me. drmhdjr@aol.com
Hopefully you will start to have a few good days, I would also call your DR and check out your meds
ERIC
My PD progressed very swiftly the first 4 years then I had DBS and that made all the difference. My quality of life is now a day to day thing. Some days good, some not. I take each day as a gift and I am grateful for every day!!!!!
The weather has been affecting me I think the huimidity has something to do with my finger joints swelling and pain in just about every other joint it feels like Arthritis. The neurologist said it was probably that, though my GP says it is the PD so I just carry on and ignore it.
Very interesting. My joints have been so much worse this summer and the Neuro says it is NOT from the PD.
It is much cooler here today and my husband does seem a little better the hot humid weather was a killer for him .
My husband has times when his PD seems worse and then he'll come back to baseline. PD progresses slowly and he's mostly been about the same. Still, last winter he fell twice and lost confidence. Right now, destressed and enjoying time at home, he's good. This sounds like a scary place to be. What works for him is exercise, and avoiding sitting and lying down too much. He needs not just exercise but to be physically active during his day. I don't know what will work for you but I/we wish you well. Take heart! There is usually something that can be done to improve things.
PD is not just one slow decline. My husband gets worse and then gets back to doing things he used to do. Keep hope alive.
hello anyone heard of know anyone with coticobasal degeneration
it is similar to patkinsons but life threatrening and limiting.
hi
cbd is like PSP but affects 1 side of the body
check I tout on the HEALTH UNLOCKED PSP site which I go on swell as this site
lol Jill
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