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Topic Newly Diagnosed... Lots of Questions Go to previous topic Go to next topic Go to higher level

By Jen0703 On 2011.04.10 18:52
My mom was diagnosed with PD last week and as much as I thought I had prepared myself to hear the dianosis, I was still in shock. She's only 62... has had other health problems (heart failure and diabetes), but they were controlled and to have this added on top of those things.. it's just really hard to take in.

I knew the symptoms of PD, so I knew what info to provide when her doc was testing her, but I went completely blank after he confirmed... and now I have so many questions, but she doesn't go back to him for a few weeks to see how the meds worked out.

I'm going to ask some questions on here, in hopes that some of you might know the answers.

1) A mild tremor in her hand started about 6 months ago, in addition to her speaking very quietly and having a hard time saying some words - her voice shook took... and then 2 months later, she was shaking so much in both hands that she couldn't write anymore (she wrote in a journal every night, has her entire life); along with severe constipation that no doctor could explain... and about a month ago, she started falling constantly and had no energy to get up on her own, along with the other problems stated above. She's shuffled her feet for years, but I never thought that was anything serious, like PD -- she's diabetic and has had neuropathy for several years, so I thought it was due to that.

So... based on the symptoms she has, when I looked into PD even more and read about the five stages, she seems to be at a stage 3-4. How can that be? Does this disease progress that quickly? I've read on most sites that it can take years to progress to this point, so I'm just really stunned/confused/upset that she's already so far into it.

2) Based on research, it sounds like she could have Autonomic Neuropathy -- as stated above, she has severe constipation and we're to the point of doing enimas every night. Her gastroenteroligist said it's like her colon is asleep and he thought it might be due to medication she's taking (takes several for diabetes, heart, etc). I felt like he didn't look into it enough... he basically said to see the neurologist and get back to him.

With PD and Autonomic Neuropathy combined, would that have caused her to go downhill so quickly?

3) The doctor put her on a low dose of Mirapex and so far, it's made her so sick. The nurse failed to mention to take it at night when we were leaving the office... so for the first couple of days she couldn't hold anything down. When I called the office to see if she could take something different, another nurse told us to make sure she took it at night. It has helped taking it at night -- and her tremors have decreased, but she's still weak and can't stay balanced. Does Mirapex help with just the tremors?

Sorry for the long post and the long questions.

Thanks,

Jen

By Emma On 2011.04.10 19:52
Hi Jen and welcome to the forum, we're glad you found us. I can't answer all of your questions and I'm not a doctor but I can give you my opinion on a couple of things. I'm sure that others will jump in with their take on your mom's situation too.

PD can progress at different rates. Some people move through the disease very slowly, others progress quickly. My guess (and it's just a guess), however, is that your mom has had PD for some time and no one picked up on the symptoms, instead ascribing them to her other health problems, like with the shuffling feet. I did the same thing with my husband. When he started having cognitive problems like poor memory and not being able to learn new things I initially chalked it up to him being lazy and not being willing to put the effort into mental tasks. When he started shuffling he was also depressed and my thought was that because he was depressed and thought he was getting old he was just turning himself into an old man. It's easy to do that rationalizing until one day you have that eureka moment and put it all together and come up with Parkinson's.

Severe constipation is extremely common with Parkinson's. Muscle rigidity can effect the whole body, including colon, rectum and sphincter muscles. A lot of people on this board have found Miralax to be the most helpful aid but please do talk to the neurologist about it.

Take care, and hugs to you.

By karolinakitty On 2011.04.11 22:46
Hi Jen... Welcome to the forum....
From your post I take that the diagnosis was from her GP, since he mentioned a neuro... Defintely get to a neuro for a full eval.
Also, check her drugs online. You don't mention it but there are certain Anti-psychotic drugs that show parkinsonism symptoms. Even if she doesn't check the drugs anyway for side effects.
The stages, i threw them aside, they make a nice guideline but if I currently followed it, i should be making funeral arrangements for my guy and he is only 54 with only being diagnosed 3 years now. With his current choking and swallowing issues and everything else going on that is the reason I say that.

As Emma said, everyone progresses differently and i suppose she has had it longer than the diagnosis. We can go back about 5 more years to maybe when it all started and maybe even longer since he loved his liquor and that could have masked it all together. In fact he states he had more tremors in that era then he does now.
Mirapex is one of those drugs where eating proteins can cause nausea, dizziness and vomiting. Did they give her the step up pack or put her on a high dosage right away? Most PCP's don't realize how powerful this drug is and prescribe it in a higher dosage rather than using a step up pack to get to her dosage....
Hope some of this helps... I know others will chime in their opinions and experiences also......

By Jen0703 On 2011.04.19 22:14
Hi - thanks for the replies.

It was her stomach doctor that told us to check with the neurologist to see what he suggested... her neurologist told her to use miralax three times a day and enimas if needed. I was just praying there was some miracle drug that would help b/c she is miserable and miralax just isn't helping her.

The neuro went through her meds and didn't think any of them were causing the symptoms, which I was hoping for ... I was so sure he'd say it was meds and not PD. Very upsetting.

I can't really figure out when she got it but based on the research I've been looking up, it doesn't always start with a tremor, I guess? I always thought that was the main symptom. She's shuffled her feet for a while and two years ago had to have a pacemaker because her heart would drop to 30 bpms and then go back up, and back down again -- very scary... anyway, again with reading as much as I can, I saw that problem could have been a symptom. Her heart doc chalked it up to CHF.

Her doc ordered some meds to help w/ nausea, so the mirapex isn't so bad now -- he's increased her dosage once so far -- trying out different dosages every two weeks. It only slightly helped with the tremor -- the higher dosage has shown just a small improvement. Her main problems is balance and weakness in the legs... she falls almost everyday.

Thanks again for the feedback. I really appreciate it.

By lurkingforacure On 2011.04.20 06:58
Jen,

You might try coconut oil (organic, extra virgin, not processed), a couple tablespoons a day. This helps my guy, not always, but usually. He takes it every day in the evening and it seems like our tummy troubles have dissipated tremendously. Plus, a huge bonus: no side effects and it tastes great. We used to have constipation regularly with all the stomach pain and since adding coconut oil (and drastically reducing how much wheat and starches we eat) we might have one bout once every several months.

If she can't/won't take it by itself (my husband just puts the spoon into the jar and eats it!) you might try mixing it into oatmeal or even a smoothie. I take it myself sometimes just because it tastes delicious and can personally add that it has the effect of urgency: when you feel like you need to go, you better go! Things slide out very quickly, sorry to be gross, so be aware of that if she might have a problem getting to the bathroom with normal speed.

By caregivermary On 2011.04.20 08:32
Jen,

Your Mom could benefit from Physical Therapy and or exercise. Check the research on both. She is still very young and would experience great improvement in balance and walking.

By LOHENGR1N On 2011.04.23 23:56
Jen0703, Hi and welcome to the forum. Just a couple of things to add, Parkinson's Symptoms don't manifest to a diagnosable degree until as a rule 60% to 80% of the dopamine producing cells of the Substantia Nigra (part of our brain) are dead. So yes we've all had it for years before diagnosis. As for the stages I'd like to have them tossed away. The most referred to scale is the Hohen -Yahr (sp.) which was produced before the use of L-Dopa (50 years ago). With the medicine and adjustments one can slip seemingly to prior stages and back easily in the early years of treatment. So I always say I can be a late stage 5 of being hit by a bus for all I know in answer to which stage I'm in.

Going numb and forgetting questions is understandable when hit with the diagnosis. Don't fault yourself for that. Along with the PD affecting the muscles, is She on Sinemet or Carba-Leva Dopa? This medicine is know to be a cause of constipation in many patients. Mirapex I can't help you with as I've never been on it (it came out some years after I was diagnosed. Constipation is also listed a side effect of this drug too.

You've found the right place to ask your questions as the People here, Caregivers and Patients alike are glad to help and there is a plethora of knowledge here. Again welcome and keep posting we're all glad to help if we can. Take care, best of luck and hang in there.

By poppadum On 2011.04.26 09:26
Hello Jen,
My husband must have had PD for some 8-9 years now because that is when he went through 2 years of severe depression, when he stayed in bed nearly permanently. His condition was so bad that his regular doctor thought my husband would not last much longer because his heart and arteries were in really bad condition in spite of him having been an avid sportsman all his life. As an ex-military man he was used to grin and bear it. Therefore he refused to take any anti-depressants, believing that it was a case of mind over matter. Much later I learned that a severe depression can happen with the onset of PD. The PD diagnosis was officially made about 6 years ago although his (brilliant and compassionate) neurologist was fairly sure much earlier that it was PD. Since then my husband tends to have bouts when existing symptoms get worse or others appear rapidly. In between his condition seems to stabilize for longer or shorter periods.
All this time I didn't know how to react or what to think. My feelings (and his too but he wouldn't talk about it until I made him in order to understand him) were going up and down like a yoyo until I read "Reflection's" explanation on this forum, dated 2011.04.02.
People in our circle of family and friends tried to tell me that my husband was doing certain things on purpose. Sometimes I fell for it, although usually I refused to, thinking it was the PD which was to blame, not my husband. From the above explanation by "Reflection" I finally learned that certain symptoms are side effects of some medicines he takes. Now I tell people who think they know better, to walk a mile in my husband's and my shoes before preaching to us. A bit drastic, but I'm so fed up of feeling like I have to explain/defend all the time.
My husband's choice of meds is limited because he is also a heart patient with a severe condition (he's on his 2nd implanted cardioverter difibrilator) for which he has to take yet other medicines that are not always compatible with the ones for PD.

I'm still trying to find my way through the maze that is PD but at least with the help of this forum I no longer feel that I am the only carer in the whole wide world who cannot cope all of the time. The carers I know in person all tend to hide their difficulties as if they're ashamed of being imperfect, so apart from the info I found on the web I was in the dark and feeling very lonely and misunderstood most of the time.


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