For those who care for someone with Parkinson's disease
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By rmshea On 2010.05.27 11:20
I just happened to find this forum; I have been so frustrated caring for my mother in law since her diagnosis. She has the eye problems, the bp problems, and yesterday she near passed out in the parking lot. Doctors, including her neurologist tell me Its not Parkinsons..the heck it isn't. She also won't do the things she needs to like hydrate...she went out in this heat and maybe had 4 oz. of liquid in her. A question..Does physical therapy improve her quality of life? She thinks it's a big nuisance.

By caregivermary On 2010.05.27 11:58
Welcome to the forum. Good to have you with us. There are many here caring for a mom or dad.

I believe PT and exercise both play a positive role in the slowing the progression of PD. My husb who is 75 and in his 20th year was in PT for an long period in 07 & 08. He does not fall as often as others and more importantly he knows how to fall and how to get up when he does fall. He worked very hard in PT and at exercising before his dementia hit hard. He continues to go to a Parkinson's exercise group once a week to keep him moving and does well there because he is able to sit in front of the instructor and mimic his moves. Parkinson's research does show keeping strong physically has definite benefits. My husb was not known for having any interest in exercising throughout his life.

Try to get your mom to drink whatever drink she likes. Sparkling juices mixed with cold water are refreshing. Try watermelon too. Lots of fruits and veggies are filled with water.

Hope this helps. Take care.

By Emma On 2010.05.27 12:27
Hi and welcome to the forum! I think that the exercise and PT have the potential to help IF she will stick with it. My husband would do it when the PT was here but that was it. Sometimes I think he's his own worst enemy. She really does need to keep hydrated, especially with the BP problems. Hang in there!

By susger8 On 2010.05.28 07:42
If your mother's neurologist doesn't know that PD causes big fluctuations in blood pressure, you might need to look for a new neurologist. I was really glad we switched to a movement disorder specialist. I kept fighting with the old doctor because he was VERY unaware of how to treat late-stage PD. The new doctor is up on all the research.


By rmshea On 2010.05.29 10:37
Thanks for the suggestions...I had no idea that the neurologist would be so ignorant about Parkinsons..I've been tearing my hair out trying to figure out what is going on. In our area this neurologist is the only game in town...I don't even know what stage she is in-she started having difficulty even before her heart surgery in 2001 and wasn't diagnosed until a couple years ago. A question: she lives alone in an apartment. When do you seek help for PD'r; I'm thinking of hiring someone to get her day started--food, meds, help dressing, etc. She won't fix herself decent meals as a rule and will not eat veggies at all. I'm the daughter in law, her sons and daughter are in total denial about how bad things are. The other daughter in law just has a live and let live attitude and she just lost her dad to combo of Parkinsons and stroke. I'm the one that sold her house and got her into an apt, do the finances, take her to all appointments. So this dependence on others has always been her manner, as her secretiveness, and hiding her condition. She was in the ambulance denying she was having a heart attack!!! How much do I push her? I've been thinking all this time that if she just tried, life would be from reading all these posts, I see she is probably doing what she can. My husband, her son, is telling me that I can't let this consume me; well, if I had some doggone help, maybe it wouldn't!! Makes one wonder what the future holds when this is all the empathy and compassion they have for their mother. Sorry for venting; it's overwhelming and I have a teenage son with ADD and ODD who is not doing well and again, I'm the only one he talks to. Tx for listening..

By rmshea On 2010.05.29 10:54
PS--I googled movement disorder specialist and there is a huge center across the street from where we've been going that covers the whole deal--speech therapy, respite care, pt and all that...WHY didn't the primary doc tell us????????? I am calling them Tues and pray I get an appt. soon..I feel like a huge burden is lifting....I have never heard the term movement disorder specialist in all this time. They are afraid of losing our money? Don't care? And this is before nationalized healthcare. Heaven help us.
Thank you's been a real education.

By LOHENGR1N On 2010.05.29 16:39
rmshea, A movement disorder specialist is a Neurologist who limits their practice to diseases that involve problems with motor skills and movement. It is a term that started probably twenty years ago or so, the medical degree is in Neurology but they are more current and up to date with medicines and current treatments than many who do not limit their practice. Many older PCP's might not even be familiar with the term.

If the waiting list to be seen is too long you can also try seeing if there is a teaching hospital in your area (university or college). As they tend to be current with new advances. Take care, good luck and hang in there.

By Lynnie On 2010.05.30 12:46
My husband goes to a Movement Disorder Specialist too and in Ontario, Canada. The specialist works at a university hospital where they have internets working along with the doctor. At the first the appointment the nurse asked lots and lots of questions and then the internet came in and went over my husband, checking his walking, and reflexes, etc. and asked more questions. They had to determine the extent of the Parkinson's or what stage he was at. Then the specialist came in and asked even more questions. Now after over 2 years of going to appointments, we basically see the intern and then he talks to the specialist who comes in at the end. It is a teaching hospital so that is why we have the interns. We've had the same intern the last 2 visits which are 6 months apart, but it might change if the intern is moving on. They consult with the specialist who come in at the end of the appointment to talk with us for a few minutes to verify how my husband is getting along and whether they thing his medicaiton should be increased. If they are in the early stages, they don't like to increase to often as they want to keep it in reserve for later years. My husband is only 62 so he has a ways to go.

By parkinit On 2010.05.30 18:54
rmshea -
Don't worry about venting. This Forum has been a blessing to allow venting with no judgments, just lots of support and care.

I also agree that it seems we have to dig, dig, dig for the information regarding the full package care of the PD patient. Yes, we hear about the drugs to take from the doctor, but we don't hear about the ambulation progression from walkiing to canes, to walkers (and what types of walkers works best, i.e., the U-step), to a wheelchair or heck, skip the wheelchair, we've progressed far enough for a power chair. We don't hear about how if you are a Veteran, they help pay for many things includuing the chair transporter for the back of your vehicle plus the chair or if you have medicare they will pay for a power chair OR a powered recliner, but not both, so be careful what you ask for. They don't tell you how OFTEN you can replace your chairs - I don't know this. They don't tell you about respite care vouchers that are free for the asking. You just have to know how and who to ask. My Elder Care representative didn't mention these, but when I asked her about them, she could give me the contact for them. All these items and more, I'm thinking, "Why, why, why doesn't anyone tell us about these things we face? Why do we have to dig? Why do we have to find out from our dear support group on the web site?

Then I remember to be so very thankful for this site. Without it, we couldn't support one another, couldn't get wonderful information, couldn't vent, couldn't learn how to be the best caregiver for our loved ones possible.

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