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Topic steady decline or bumpy drops? Go to previous topic Go to next topic Go to higher level

By lurkingforacure On 2015.04.14 09:18
While I realize PD is different for everyone, I am wondering if there is any pattern as to the decline. Have you noticed your loved one's decline to be steady and relatively smooth (this could be a fast or slow decline, but basically steady) or is it more bumpy, where you rock along at one pace for awhile and then seemingly suddenly you are at a completely different level of functionality?

I also realize that if someone has surgery, an accident, etc., that this can change things, but I am talking about where you are just going about your PD life and then it seems like rather suddenly this or that function is much more difficult (or no longer possible)?

I keep reading about PWP who have had PD 15, 20, even 25+ years and wonder how we can be like them:) So far I haven't been able to figure out why they do so well with PD, very frustrating.

By LOHENGR1N On 2015.04.14 17:17
Well at the risk of getting myself in trouble or someone getting offended I'll venture an answer. In a week or so I'll have my anniversary on Patriots Day weekend (1986) I woke with bi-lateral upper extremity tremor and began my dance with Parkinson's. I have a dear friend (we worked together back then) who is about 1 year ahead of me with Parkinson's Disease. Aside from working side by side, in the same job, same building we have the same Neurologist. but I digress. Speaking for myself, him and others I know who have had P.D. 20 years or more, we're an odd combination of being cynical, jaded and hopeful. My friends path has been marked with falls at times 20 or more per day. wild dyskinesia and dystonia. He tried many of the drugs that they came out with and suffered many side-effects of them violent mood and personality changes, vivid hallucinations (talking to people who weren't there, etc., etc..) Where as I living alone declined most telling the Doc I live alone, if I start talking to things that aren't there I'm going to be in trouble. Many drugs in the early days had side-effects unknown at the time which have been incorporated into being part of the disease. Because as my cynical and jaded parts say the pharmaceutical industry want you to take them so if side-effects are thought to be the disease better for them. So for the most part We don't jump on the newer drugs and if we do we do so with different expectations than patients newer to P.D. We hope for miracles but expect maybe some to moderate relief. Over the years we may become more in tune to our bodies? We may try something but being jaded and cynical not buy into the give it a few weeks to start working kind of speech? We feel or sense the benefit may not be worth the side-effect kind of balancing act stuff. Also generally we're not chasing after all the crazes in diet and vitamins supplement things. As you change diet and add supplements you are also changing the way your body absorbs and processes medications. Some can hinder, some can enhance. This is hit and miss and can wreak havoc with the PWP. We really seem to just go about our life In a more consistent manner. We exercise but in a way we like and have fun doing not because we're told to every day and do what we're told to every day but because we enjoy it and like doing it. We're jaded and cynical but hopeful. Jaded and cynical that this or that routine is the answer and hopeful our exercise will help us fight and function longer. My/Our exercise is akin to how runners experience withdrawal if they skip running, we feel the need to do it because we enjoy it not because of any claim of delaying progression or because a Doctor tells Us to. Maybe it is the change within Us over the years waiting for the cure just around the corner. We realize at some point the Doctors know what someone like Us have told them about not in most cases something they themselves are living with. As throughout Parkinson's Disease everyone is different and on a different progression so there's no magic formula We old timers use, just as with the disease there's nothing to cure it or halt it yet, we're just as hopeful as others there will be some day soon, After all these years I still tremor and I/We know there's nothing to stop it we can get it under moderate control sometimes but it is still there with us.

I think mostly decline is steady as the dopamine cells are dying off or ceasing to function. Bumps and sudden drops might correlate more to changes in diets and supplements if not medication or infections and accidents. As I've stated I don't know of any magic formula we old timers have struck upon other than we're more jaded, cynical and a dash of hopeful crusty curmudgeons/curmudgeonesses(sp?) who appear stubborn and stuck in our ways. But it seems to work for Us. Hope I haven't offended any here with my response. Be good to each other, take care, best of luck and hang in there.

By ResistanceFutil On 2015.04.16 10:27
Thanks for such an honest and brave synopsis of this disease progression. While understanding that my husband's (PWP) mileage may vary, your outlook and experience sounds like that of a true survivor. Again thanks for taking the time for such a helpful explanation.

By Lynnie2 On 2015.04.18 15:54
I think my husband decline has been slow, and at the beginning the MDS said that the kind of PD is the slow progression. I haven't seen any drastic changes but just a steady slow decline. He is in his 8th year and will be 67 years old.
I know over the past year his memory has been getting worse, depending on the day of course, and this ability to speak has decreased. He has problems finding certain words when trying to express himself. We are doing some speech therapy right now to basically help with the volume and pitch.
He has a lung surgery (lobectomy) this winter but he is doing okay. It will probably take him longer to gain his strength than a person without PD though.
He is a brave man to go through that surgery, but luckily we found it in the early stages.
Lohegrin--- since you have had PD for a long time, I just was wondering what kind of medication you take.
Do you take anything for memory?
My husband takes 100/25 mg. Levodopa & Carbidopa , 2 - 4 times per day.
They were talking about giving him something for memory that Alzheimer patience take. I don't know the name of medication, as they talked about it before his surgery, and didn't want to start him on it at that point. We'll see the MDS this summer again.

By jaxrock On 2015.04.18 16:10
Lynnie, my husband was put on the Exelon Patch a few years ago.....He's now on the 9.5mg dose patch.
At first, there was a great deal of difference in his cognition....
Now, unfortunately, his PD and dementia symptoms are worsening.
He does have some clear days, and some "off" days....can't string the days of the week together, doesn't know timeframes, etc...other days, he sounds like his old "self".
He has an appt. with a new neuro this Tuesday, and I'm planning to ask if there is anything else to help with his mental ability....
But, the Exelon patch did help for quite awhile - with no side effects.
good Luck

By Wildcats1958 On 2015.04.18 20:26
My husband is 79 and in the 15 year. It seems like it has been steady incline. I don't realize it and then I will think about an event a year ago or six months ago and realize that " things are different". He had a triple heart bypass in the 8th year and he showed some behavior change. There was a lot of body aching rigidity. He had DBS for one side in August 2013 and the other side done August 2014. The anesthesia threw his mind for a loop for 5 days last August and I don't think he has gotten back to where I had just assumed he would. Carbio/dopia is 1 1/2 every three hours and the extended release at bed time. He is a controller.....always had to have the last word and still does. He drives me crazy now because he is adamant that he can still do everything as before so all technical things, garage, fixit it person is not the same. He is living in complete denial to cope. I am always wrong and the bad guy. Since the August surgery he is sure that I am hard to live with and he gets days, times, etc. mixed up. Always wants to leave for things 2 hrs ahead etc. I don't need to hire help yet but the falls will continue to come. He is so sure that the next one won't come so I am having to just use tough love and go about my errands etc. I think the mind is on a gradual decline and it is going to get quite bad. The Exelon patch has helped some but the Aricept made him ill. So measure the decline back at 6 month intervals. The hardest part about caregiving is to just be quiet and let it go when there is confrontation. I am not good at that. I expect a fall will happen that will be a game changer. Yes they need praise but you do to.

By umajane On 2015.04.20 00:08
To Wildcats,
I am also not good at letting things go...even when he insists on something and it doesn't make sense I try ever so hard not to be confrontational as I used to be. Being a caregiver has so many roles and the mental challenges are the most difficult for me at this time...Each day is a new day with new challenges...

By LOHENGR1N On 2015.04.20 20:13
Lynnie, I do not take anything for memory. I take Carbidopa / Levodopa 25/100 two an a half tablets 5 times a day, Inderal L.A. 160 mg 3 times a day, flexural when needed for stiffness and rigidity, Artane 2mg per night. and ibuprofen for pain throughout the day.

Many times people will use the stages or amount of medication taken to gauge where the PWP is in relationship to the disease. Please don't any one misunderstand me here, I'm not referring to any one here or anywhere else I'm just being general with my statements. It's not in anyway personal to anyone. What happens many times is and it is only normal I guess is We want to be functioning like before the disease, but unfortunately as it stands now We can't. Our medication is powerful brain changing stuff, we take something to help a symptom and it makes other problems occur. Our thinking can become effected or slow and cloudy. We end up taking more and more medicine to counteract the side effects of the medication we just started on and it can become a never ending circle. Many Doctors seem glad to dispense medications and really it's just about all they have to try and help us. In the support group I just started to attend they were comparing medicine we each take and I got a couple of looks from some caregivers there like "that's all you take? You're not very far along with P.D." kind of thing. Lol, yet I'm the only one who cannot walk without assistance and or a cane.

Above I hope I didn't mislead some with my reply to the question as it asked as We seem to just go along after all these years? It's all we can do is try to just go along. I mentioned before in other posts about my Neurologist seeing my Friend Tom and then Me the next appointment (back to back) and saying how sad he was telling me he wouldn't ever let that happen again because there was nothing he could do for us but watch and try to ease symptoms as they came up but he couldn't cure us or really help us much. I took a survey a couple years ago and after reading my answers almost all of them fit into the advanced category. I was stunned and in a funk for a bit, I didn't realize I had progressed so. If I gave any impression of strolling through the fields with a bluebird on my shoulder as Uncle Remus sings my o my what a beautiful day I didn't mean it that way. At times some of the caregivers here have asked how I was doing personally? To let them know to post. So as long as I'm at the keyboard I'll try to be brief, I bounce off walls esp. the hallway in the home. Over the past few years my vision is giving me problems, blurred and double vision at times which is strangely neat if you can control the panic you reach out with two right or left hands toward two objects and both hands wrap around both objects.(yes we do have warped senses of humor but we have to or it would reduce us to jello) I can't walk without assistance mostly my cane and even then I cannot wlak in a straight line at all I veer off at a 45 degree angle and continually fight to straighten out my walk to get where I'm going. Going back to vision I'm having more trouble adjusting to coming in from a bright area to a darker one and vise versa. I have been practicing lately using my pills for confetti tossing them quite well around the room. Flipping and dropping plate and bowls, slopping coffee the usual stuff. So we old-timers have a lot on our slates but we try to keep up beat. I don't complain too much at the Neurologists because when I do his shoulders lower head bows and says well you've done so well for so long...yeah Doc but that really doesn't help now does it? As his words from years ago run through my mind there's nothing I can do but just watch. I guess that's all we can do any of us is just watch and clumsily try to make it a bit better. I'm not looking for pity or anything else I just wanted to clear up if I had given the impression all was rosy before. We've all got our path to walk some here have fuller plates than me other less to deal with but We're all in it together And still all that comes out of the magicians hat is a rabbit no cure yet. Be good to each other, take care, best of luck and hang in there.

By Catherine On 2015.04.21 23:11
My husband is 68 and in his 6th year since diagnosis, is recently having symptoms such as tremor and twitching thumb on his left hand and pain in left foot and leg after having symptoms only on his right side for the first 6 years. His fatigue has worsened feeling as though he has about 2-3 hours/day where he has energy . He has been physically active for years, trekking mountains in Nepal and Africa, and throughout the US, although with his decline in the last 6 months, his climbing is no longer possible to that extent. The emotional impact has been the most significant with a sense of doom lately, but we think this will shift with a change in dosages of certain medications. It is a slow and bumpy ride...typically what he experiences internally is far more disturbing than what is external. Many people are shocked to hear he has PD because when he is out in public he has timed his meds so well that he appears healthy. As a spouse, the daily ups and downs, the unknowns, the adjustment to his on and off periods...all very difficult. I am thankful he has progressed this slowly, but the symptoms on both sides of his body now are a reminder that the disease is progressing.

By moonswife On 2015.05.06 10:35
Wildcat1958, I think we married the same man, or men with identical personalities and afflictions. Every time I come home from work and see a ladder against the lemon tree I get on my knees and thank his creator for protecting him from falling. I wish he would stick to the tomato plants. His decline since the middle 90's has been slow. The DBS nearly six years ago stopped the wicked shaking, but everything else progresses, EXCEPT HIS BELIEF HE CAN STILL DO ANYTHING. Therein is the rub. On the other hand, he has a positive attitude, which I truly admire.

By Lynnie2 On 2015.05.06 18:59
Lohengrin I was wondering how you can type so well. Did you take typing in school.
My husband never took typing in school so when he was able he work the computer he used two fingers.
Now he has problems using the mouse or the plate on a laptop so he doesn't use the computer at all.
He also has problems reading and looses his place.
I am doing speech therapy with him to raise the volume, but can't do much about the reading process.

You are fortune to be able to use the computer for various things.

By LOHENGR1N On 2015.05.06 20:19
Lynnie, no I didn't take typing in school. I'm still basically a two finger typer. Does your husband have tremor in both arms? I have trouble using the plate in my lap top so I have a regular mouse plugged into a usb port and use that. I'm left handed and used the mouse on my first computer as a righty for about the first 3 years before I found out you can change it to left hand. If your husband has tremor in one arm he could try using the mouse in the other. We can adapt it may take a little getting used to but we can do it. Also you can adjust the sensitivity of the mouse if you go to the control panel and click on mouse it will show you the options. Try them out to see what works and what doesn't for him, it's better than just not using it and if he finds something that seems to work with more practice he will find it becomes easier. Like the old joke "how do you get to Carnegie hall? practice, practice, practice" We have to over time concede so much to this disease, we always are adapting and altering, trying different ways to do what we once easily did before. I hope by adjusting the mouse it will get him back on the computer it may not be that it is as fluid and easy as before but at least he'll be able to get around the web and thumb his nose at Parkinson's for a bit and regain what he thought he lost. Any little gain is far better than conceding something he enjoyed. I hope this mouse trick works and others try it and if we're only two finger typing and it may take us forever compared to some so what we're online and we're trying tell him not to worry to be easy on himself and cut himself some slack and like the old nike ads just do it, really that's all Us Parkies can do, 'we're all authors now writing our own story in this journey with Parkinson's Disease. And we're all each of Us patients messes at times, can't talk, can't type, can't sit still and can't move. We can't give in we ride out the bad and make use of the good times it's all we can do. I hope he can strike a balance and get back online . Take care, best of luck and hang in there

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