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Topic Fast version of PD!?!? Go to previous topic Go to next topic Go to higher level

By ceecee On 2012.11.15 17:21
Is there a fast moving PD? My husband is afraid that he will have something like this. Since his tremor started so fast he is afraid that he will be paralized within a year. So does PD come in different progressions? Slow, medium, fast.

I'm new to this so I don't know this either.

By jcoff012 On 2012.11.15 17:35

My husband has PD. He was dx about three years ago, but we moved and he changed neuros. Earlier this year, this dr. told him he has to have had PD much longer, but didn't have a good dx..he thinks he has had it for a minimum of ten years...judging by the brain scan, MRI, several visits over the last year, etc. He refuses to give in to the disease and keeps exercising, walking, cooking, and doing things as "normally" as he can. (He will soon be 65).

Now, my MIL had PD for 22 years. Her's was a very slow moving one and although she had many symptoms, freezing, facial mask, quiet voice, she kept her wit and humor til the end. She was never paralyzed. I think what you fear is the "freezing". Make sure you have a good neuro, not just a family doctor. There are so many doctors who know very little about PD, but on the other hand there are so many who can help your husband manage.

Al (Lo) is a good resource, as he is a man with great wit and humor, as well as a man dealing with the disease. He is our sounding board.

My suggestion, and correct me if I am wrong everyone, would be to schedule an appointment with the doctor who dx the PD, and relay your questions...and GET answers...I think what all of us fear is the unknown...Hugs, Jane

By LOHENGR1N On 2012.11.15 19:48
ceecee, You and Your Husband need to take a breath and relax for a moment. Parkinson's Disease progression seems to be different in each individual just as symptoms seem to be different in each. Meaning not everyone has tremors (about 30% of People with Parkinson's don't have tremor) so not everyone will develop what someone else may. Jane is correct to suggest getting an appointment with a specialist even if only for a second opinion. Try contacting the American Parkinson's Disease Association they have information and referral centers throughout the country and should have one near you (by near in might be 100 or more miles, the nearest one to me was 150 miles away in Boston) have your doctor make the appointment for you (they can get it faster) it's worth the trip and they are good at answering any questions you have. It could take 6 months or longer but hey you're not doing anything so it's better to get the opinion and be more informed.

Second as Jane said "We" all Parkies have had the disease way longer than from diagnosis. It's estimated that before a tremor shows up or other signs of Parkinson's present for diagnosis 65 to 80% of the dopamine producing cells in our brain (in the Substentia Nigra sp?) have died off. estimated time around 10 years.

Keep exercising! Keep doing the things you normally do now for as long as possible! I firmly believe it helps! You don't have to go the the gym, Walk, do yard work don't become sedentary. I think this helps keep you able to keep on trucking when things get sticky. It's normal to be scared of what the future holds, and diagnosis hits Us like running into a brick wall. Although there is still no cure there are many, many more advances in medication that have come along over these past couple of decades to help improve the quality of life with Parkinson's Disease.

While yes it is scary and I do understand your Husbands fear with the rapid onset of his tremor! On Patriots Day weekend 1986 I awoke with tremors in both arms (just woke up and there the tremor was, arms flopping). I was 33 years old at the time (a few months from my 34th birthday) the Neurologist made the diagnosis and said I'd be on medication the rest of my which being the way I am I askeed how long is that? His response 15 years maybe 20 if you're lucky (prognosis was bleak back in the dark ages) Gee couldn't you have said 25 to 30 years I retorted......We'll see was his reply. So here I am well into my 28th year of living with Parkinson's Disease 60 years old. One thing we have to remember is to live life to the best of our ability every day. No one knows how long they have, we have to train ourselves to not dwell on these things we can't change. We have to at times fight to stay positive, to not give in and some days is will seem easy and better to give in but that's when we have to fight the hardest.

In closing stick around ask questions the People here are the best and willing to help all they can.

Oh and one more thing before I close if you look up in a dictionary; paralysis agitans; n. Parkinson's Disease. Paralysis means inability to control movements (esp. in medical field) Now what's your Husband worried about? We already are. Don't sweat it, Sorry if this sounds crass or unfeeling to many it's just my way of dealing and coping with things out of control.

Welcome to the forum, please stick around ask questions, Help others and maybe my dark humor might grow on you. Or at least you will be numb to it. Again I'm sorry if I came across too cheeky in the last paragraph. Take care, best of luck and hang in there.

Doc Holliday: What did you ever want? Wyatt Earp: Just to live a normal life. Doc Holliday: There's no normal life, Wyatt, it's just life. Get on with it.

By ceecee On 2012.11.15 19:52
Jane, I have to ask you, you make it out to sound your husband is normal! Listen, I have never dealt with this before, neither has my husband. I look at him and no one would know he has any "disease". Now I ask him how he feels and he says miserable, his right foot muscles from the toes to his ankle feels like restless leg syndrome, the contraction is shaky, trembling, and twitching) off and on all day(mostly on). From the contractions all day they burn like they are over worked. It's like turning on and off a light switch and getting shocked (that's why the muscle contracts). The contractions move around to his upper back leg for a while, and his calf. It's as if the muscle never relaxes. He also says it's like a charlie horse.

Now here I have a husband (63 yrs old) with just a right leg that does this and he is miserable of this! The panic attack he developed in May and being treated for doesn't help either but we are working on that and it is improving.

Is the leg symptom typical of PD?

jim and I are "new" (not a good term) at this. I'm trying to read up on PD while I tell him we will deal with this together and I won't leave him, work a full time job, keep his sanity, figure out what to do with the house and big yard, etc.

He's asking me all these questions and I'm trying to figure out if PD people feel like he does with just a few twitches in a foot!

Someone tell me what it feels like.

By ceecee On 2012.11.15 20:13
Lo, thank you so much, your response was thoughtful and knowledgable. We went to Cleveland Clinic to see a MDS and hope we made the right choice. She seems very up-to-date. I am so glad I found this site and hope to be in contact with you all for your guidance and huge knowledge base.

P.S. don't ask me any questions because I don't know squat. :)

By jcoff012 On 2012.11.16 14:56

I amsittingin the car at noon waiting for my husband...oops...I will finish at home! Nothing iz wrong!

By jcoff012 On 2012.11.16 20:13

We are home now...I was sitting in the car trying to type on my fingers are too fat for that tiny keyboard!

Back to your comments...First, my husband's PD was not dx til three years ago, but his newest neuro says he has had it at least ten years.

It's funny, but I don't think of my husband as being gravely ill, simply because he is stoic and keeps plugging along, no matter what.

You see, we have survived our daughter's death (30 years ago, we donated her kidneys after taking her off life support); and in the last six years, we lost my BIL to a brain tumor; FIL to lung cancer; MIL to PD after 22 years; I was dx with uterine cancer and found "no evidence of disease" this year after three surgeries and five years of tests and checkups; our son has testicular cancer and still is battling a football sized tumor; he had a 2.2 pound preemie daughter who has co ordination problems; and my husband was dx with PD!

I have stated all of this in response to others on this board. You see, my oncology team told me over and over to: find something that makes you laugh out loud EVERY day; walk, even if you don't feel like it; take health issues one step at a time; and, most poignantly of all...don't worry about things that have yet to happen, for tomorrow there may be better news than today.

So, if it sounds like my husband is normal, that's just our way of coping and realizing, "it is what it is." He has tremors that are progressing up his left side, has a mask like facial expression most of the time, is in constant back, neck, and shoulder pain, cramps in both feet, bought a recliner because he feels like he is choking from the drool in his throat, we no longer sleep in the same bed...he tries often enough, but almost always has to leave, and we keep battling on...

We have never discussed whether I plan on staying...he and I are rarely apart...Also, Al and several others, are my rocks...I ask for their advice, then use it! Al told me to give him, today, I did just that.

So, that's what I was doing earlier...he wanted to shop at the Mall..we did for several hours, then he went back in and I sat in the car he could take his time trying on pants! Al told me to let him alone, so I did! We all want his life to be as full as he can handle for as long as he can keep going...our SIL said he wants Dad to "leave this earth working at his workbench." They spent part of last weekend drawing plans, sorting out oak, etc. to make an arts and crafts will take him longer, but they will start it soon.

Please come back and express your feelings...the end of this horrible disease is certain, but the path to it is as varied as the PWP and the caregivers who face it!

Hope you find joy and laughter...I wish you love and do something fun this truly helps! Jane

By Trusting On 2012.11.18 00:36
These posts remind me that once PD was diagnosed in my husband and I have learned a "little" about the disease, I realize my husband had PD for quite a while before the diagnosis. I remember giving him leg massages and when I would touch his toes he couldn't straighten them out, they curled under. He had such horrible leg pain, pain in his arm. He was being treated for tremors years ago but was never tested for PD. The slumping and shuffling of the feet was when we began to put it all together.

People on this post have already helped me so much in understanding how much pain he is really in and have helped me learn. Thank you and may you each one be blessed.

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