The Parkinson's Thread

fureverywhere

fureverywhere

beloved friend who will always be with us in spiri
Location
Northern NJ, USA
For patients and or caregivers, maybe we each need our own thread? I just got a book through Barnes and Noble " No Saint's Around Here" by Susan Allen Toth. I've just skimmed it so far. The author is more well to do than I'll ever be, but I can't hate her for that. But realizing that "Hoooly crap, I might be forced to outlive him". Given my blood pressure that remains to be seen.

But really from my reading, Parkinson's can progress many years. Or in my aunt's case...the tremor more pronounced, the visual wasting away...even with great meds and rehab...she was gone in three years after the initial diagnosis. Considering widowhood and an adult son who could help. a dependent daughter, the dogs and crap...best buddy could help in a pinch. But wow so much to figure.
 

A friend of mine was diagnosed a couple of years ago and he seems to be doing OK. He is on meds which help a lot. He's a bit shaky but seems to be able to get around and be independent.

Fur, its good that you are doing research. There seems to be a lot of information online. Good not to stress about it too much and stay well yourself and happy. A support group maybe?
 
A friend of mine was just diagnosed a couple of months ago. Dr said she's probably had it for about 2 years. She doesn't shake but her right hand and legs are weak and her balanace isn't as good as it was. She's gotten a lot of pep talks from friends and relatives and she's trying to be positive. Yoga, Tai Chi, exercise bike and wants to go to the gym with me. She's just retired this month - age 63.
 

My mother developed Parkinsons in her 60's and had it for 17 years. Occasionally she suffered side effects from the meds and had short spells in hospital to stabilise her condition. Otherwise she managed quite well. I could tell how she was when I phoned her by the way the tremor caused her earings to rattle against the phone.
 
They claim 20% of Parkinson sufferers don't have the tremors at all. My father was diagnosed with it in his 80's and never had them. I never felt comfortable with that diagnosis. Evidently the most important factor in the diagnosis is whether the standard prescription drug (Levadopa?) improves the condition or not. I could never see any improvement. But there are several age-related brain function problems, with similar symptoms to Parkinson's, that cannot be helped with any drugs at all, so I've finally made peace with it, after several years.
 
My uncle had it for years. And his tremors became pronounced. He would fall walking down the street, and people just thought he was a drunk, he said. He passed in 1994, so maybe things have changed since then. I think something like this must be very individual. Bummer you have to deal with this.
 
My husband was diagnosed with Parkinsons 2 years ago and he was only 58. There are a number of different medications out there and he is currently on the NeuPro patch. Michael J. Fox has certainly encouraged more research in that area.

We liked the local referred neurologist but felt he could be doing more. When we asked pointed questions, his response was mainly a pat on the back and "Just keep up with your medication and you'll be fine." Last fall we asked the Parkinson's Foundation for a referral to a Parkinson specialist. There are 5 in the state. The closest one is in Knoxville (2 hr drive) and we managed to get an quick appointment as she moved from one practice group to another. She added a medication, in addition to the patch and he is doing really well and continues to work. The fatigue is the worst part and we are thinking it may be time to retire in about 2 years. A lot of posts on this site seem to encourage - retire sooner rather than later - and we would like to have some quality time while we can.

There is Parkinson's Forum online where people from all over the world have been sharing information. I recommend anyone with the condition, as well as care-givers to join or at least check it out. Some of these folks have had it for a long time.

http://www.allaboutparkinsons.com/forum/index.php
 
Myquest55 said:
My husband was diagnosed with Parkinsons 2 years ago and he was only 58. There are a number of different medications out there and he is currently on the NeuPro patch. Michael J. Fox has certainly encouraged more research in that area.

We liked the local referred neurologist but felt he could be doing more. When we asked pointed questions, his response was mainly a pat on the back and "Just keep up with your medication and you'll be fine."
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This is the kind of response I usually get from doctors - just keep taking your drugs. When I question them, they also become insecure - how dare I question "god". That kind of thinking has created a world of hurt for those who become dependent on the ones they do not need. It's a national epidemic.

Glad you found someone who can help your husband. Yes, early retirement is often better. You can't get the time back, once it's gone.
 
I suppose there are all kinds of variables in how and how long a person can live with Parkinson's. It kind of relieves me today that Mohammed Ali had it for thirty years. I mean my aunt just deteriorated over a couple years. One year she was walking and talking almost normally, by the following year fragile enough you could have easily picked her up.

But she was probably in her early eighties at the time. Hubby is fifty eight, they call it early onset. But as I 've said before he always used to be a big guy. Just seeing what it's doing to him is frightening. But knowing it's not an instant death sentence is a bit of a comfort.
 
With Mohammed Ali, I would imagine his case could be a little different because of his self-induced injuries. Maybe your husband will have longer, therefore. It must be so worrisome for you.
 
I don't know...another monster in our lives is black mold. We can not afford to move as of yet. Our kids grew up in this house. But...hubby's sister had brain cancer in late 20's, his brother throat cancer in 40's, two kids with mental retardation and two cases of Parkinson's. Everyone lived in this house...chilling or what? Yep we are doomed.
 
fureverywhere said:
I don't know...another monster in our lives is black mold. We can not afford to move as of yet. Our kids grew up in this house. But...hubby's sister had brain cancer in late 20's, his brother throat cancer in 40's, two kids with mental retardation and two cases of Parkinson's. Everyone lived in this house...chilling or what? Yep we are doomed.
Click to expand...

I can see your reason for being concerned about the house. Let's put energy on you being able to move sooner rather than later.
 
But I look at hubby...we get the groceries every week...I bag and load because he drops things. He was always close to linebacker size. Now it's oh %^&$...he needs help getting one sock on. " Grow old along with me...we are %$#&ed"
 
You're right, Fur. Disease and old age do that to us. It makes a person frustrated, sad, angry, depressed, despairing and all the negative adjectives one can think of. It's hard to cope. I thought I was going to lose it when my husband had his colon out and our life changed permanently. His personality changed in some ways, I think from being under the anesthesia for 12 hours. And he was close to dying. I am still adjusting. So is he. He is frail now, in some ways. With Parkinsons it has to be very frustrating for you, because of the projected progression of the disease. You have the burden of coping. We are here and we can listen. If you need in-person support, maybe you can find a support group locally.
 
Just a quick update here. Leaving TN behind, we moved to Maine Dec. 2017. There is a tremendous Neurology Dept. here attached to the Maine Medical Hospital system. They have been terrific and no more 2 hr. drives for treatments. The cooler weather agrees with us and DH's Parkinsons is progressing slowly. We have our names on a wait list for a Retirement Community nearby - I figure I will need some help, eventually. Let us know how you're doing!
 
Sorry you and hubs are going through this @Myquest55 , and very pleased you're finding your living conditions and the new Neurology dept better for you...

My father had PD got it in his 70's.. then went onto have lots of mini strokes ..and died in his early 80's..

Just to update everyone , the OP of this thread .. Fureverywhere, died a few years ago..
 
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Hi alligatorbob - At this time, there is no know genetic link of Parkinsons to family members. DH did, however, when first diagnosed, participate in a clinical trial for that reason. Not sure what became of it. His older brother has it but we're pretty sure he was exposed to pesticides through his work. DH was in the USNavy submarines for 12 years but we can't know for sure if that may have caused it.

Everyone who has it , has different reactions. It can move very slowly or very quickly. There are two good sources for information - the Michael J. Fox Foundation and the Parkinson's Foundation (That is where we obtained a list of "Specialists" in our area) . IF you do ever get a diagnosis for Parkinsons, I HIGHLY recommend that you seek out a Specialist!! A general Neurologist does not have the same focus and, as we found, was not particularly careful, or knowledgeable about the drugs available. We ultimately ended up driving 2hrs each way to see a Specialist and it was totally worth it!! I'm glad we don't have that commute but there were people in the waiting room, the last time, from New Hampshire - it is totally worth the ride!

I have no idea what is ahead but DH worked 3 years after his diagnoses and has enjoyed retirement in Maine after that. It could be so much worse!!
 
My husband has Parkinson’s too. He was formally diagnosed in 2018 or 2019. In hindsight I saw other signs, just didn’t know about them. Our friend has it and one or two of his brothers.
 

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