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By Jenztrenz On 2013.08.11 12:07
Im a 43 yo caring for my 64 year old mom who has been diagnosed for about a year. Iʻm a little frustrated because she doesnt want to go to an adult day care, doesnt listen about how important it is to excercise. She expects me to do it for or with her. She is suffering with a lower back issue and the doctors cant figure out what is wrong with her. I dont know where to go from here. No family support!!! Truthfully she likes to be babied! Please help iʻm about to lose my mind!!!

By VioletV On 2013.08.11 15:58
Oh Welcome Jenztrenz,

I'm mostly a watcher/lurker on this site, but since others haven't responded yet, I'll jump in and say hello. It's a hard thing, discovering that you've been thrust into the caregiver role. I know that the people here on this site have been where you are. You can expect to find a lot of empathy, support, room to vent, occasional humor, and good information as well.

As for what to do first/next in caring for your mom (who is just my age!), I'm not sure what to recommend other than that the FIRST thing is to honor your willingness and readiness to take on this role, and to respect your right to be tired, frustrated and just plain overwhelmed.

Preserving your sanity is important, and you deserve to be treated well--tho Parkinson's can make a person who has it (in my experience) frustrated, demanding, frightened and just plain tired of dealing with it.

So take a deep breath, read some of the postings and join us in this club no one planned to join. If you can describe more of the specific situation you are facing--you've named several--and what first-change would make the most difference at this moment.

VV

By parkinit On 2013.08.11 19:47
Welcome Jentrenz -

You need to make some kind of "deal" with your mom to get her to try the adult care just once. She may find she actually enjoys it if she would just give it a try. Maybe you should be honest with her and tell her that even though she may not want to go it is important for YOU to have a break and this is a way for it to happen.

Also, the back pain is a common element with those with PD, so it may be a real pain. The muscles in the body constrict and cramp with those who have PD. It may be something that isn't occurring when being viewed by a doctor, but this element of PD is very real and very painful to those who have back pain with PD.

By Pearly4 On 2013.08.11 20:33
You definitely need the break that it will give you. We talked my mother into accompanying my husband and I to "just look" at the facility, the enlisted the aid of the staff who just wanted to "talk with you" a while. They're very skillful and believe me, they've seen and dealt with this more than once. They helped her fill in the paper work herself and we got to "try it" for a period of time and as the days past, she quit complaining and went. She never said she enjoyed it but it was obvious she did and it helped her tremendously besides giving us a break we had to have. Later we were able to expand that into assistance at home from an aide and while caregiving never got easy, we were at not in it alone any longer.

By Jenztrenz On 2013.08.11 22:50
Thankyou everyone with your loving response. This is helping me tremendously today! Feeling better that i have somewhere to reach.

@parkinit any suggestions for the back pain? She limps on one side of her foot which i thought was causing that pain but after months of physical therapy it didnt improve.

By LOHENGR1N On 2013.08.12 00:02
Jenztrenz, Welcome to the forum. I have Parkinson's so I let these great caregivers respond on the daycare. You mentioned months of physical therapy because your Mom limped on the side of one foot? I'm glad you found our forum. This "curling" or rotating of the foot is quite common in Parkinson's (in long distance running they call it pronating" when you look at the soles of the shoe and the heel is worn way down on one side but the other side is almost new looking. With Parkinson's Disease it is a form of Dystonia a slow contraction or twisting (cramping) of the muscle or muscle group. Most of Us have this or will develop the foot curl. I bet if you look at your Mom and other caregivers look at their PWP You'll notice when we sit down our feet are flat, after a time looking at them we're resting them on the outside edges with our ankles bent. Dystonia is also what parkinit was referring to with your Mom's back. It can be like a camp or charlie horse as our muscles contract and tighten on one side stretching those on the other side or contract both sides.

For the back pain I'd say use a heating pad or warm towel every so often or a long soak in a warm tub. If you go to physical therapy they're likely to say exercise the "weak side so the strong side doesn't pull it" which isn't happening with Dystonia. It isn't a matter of weak verses strong side. Also pain meds can make Parkinson's symptoms worse so many Neurologists shy away from heavy ones. Again welcome to the forum You're already an asset! I don't think "foot curl" has ever been brought up or discussed before here (and I've been around the forum since the get go when it first started then re-organized and came back online again) Keep questioning and read up all you can on P.D. There's a great group here who help anyway they can. Take care, best of luck and hang in there.

By Jenztrenz On 2013.08.12 12:54
Thankyou for giving me a better understanding of PD!!!!!

By Jenztrenz On 2013.08.18 02:00
Heres my update from last week which was a roller coaster ride since ( went to ER for really high blood pressure, anxiety attacks and low tsh in my thyroid) I really had to stop and relax.... So since my health has been crazy i took the step to enroll my mom into an adult day care at least 3 days a week ( which hasnt started yet) she is trying every which way to get out of it but ive been very stern with her. Though thanks to all your help iʻm able to be a little more compassionate. :)

Do any of you have any recommendations for at home excercise dvds etc made especially for parkinson patients?

Any books you would suggest?

Im in search for a physical therapist who specialize with pd..... Any ideas?

By LOHENGR1N On 2013.08.19 11:27
Jenz, For home exercise booklets and such I'd check the Parkinson's sites, American Parkinson's Disease Association, The National Parkinson's Foundation etc. You can find many fly by night sites and exercise dvd's out there but I'd trust a foundation more. As for physical therapist this might be harder, they are getting better but many didn't understand the problems with P.D. I would suggest anyone going to PT that the caregiver attend the first few sessions. Also make an appointment at different times at first. Go when the Med's are working the first time so you can get the patient there and so they can see range of motion and ability then have one session when the med's aren't working so well to see the difference in ability both you and the PT. By doing this it will help down the line with the marked difference in doing the exercises. If you don't go problems in communication will result like "you do so well at PT and here at home you just don't try or say you can't, you have to do them here too! You know!" Then We patients resent it and think you don't care how we feel and you resent it thinking We don't care and don't want to do them.

I say this from personal experience as a PT said they could get me back in shape but it would take work;
with my med's low my back was like a board, ridged and inflexible, next time see it's loosening up! Next time low levels of med's what did you do your back is so ridged again? Also at a support meeting a PT was telling of a Woman in Her 70's who walked the treadmill like she had nothing wrong then one day showed up and had a horrorable time trying to walk it! She asked what happened to which the Woman said this is just how I am sometimes. The difference? The woman always had a morning appointment this was afternoon and Her medicine hadn't started working yet. She said She had heard and knew of a difference in proformance but until She saw it with her own eyes she didn't believe it was any big deal. So it is importiant for both caregiver and PT to see the swings in ability We have throughout the day. Take care, good luck and hang in there

By dans316 On 2013.08.19 16:19
Here is the info on Kevin Lockette who is a PT who has specialized in Parkinsons for 20+ years. Unfortunately he practices in Hawaii, but he does have a DVD and a book of exercises.
http://www.parkinsonsmoveit.com/home

By Jenztrenz On 2013.08.19 16:58
@dans 316 its not unfortunate its a great thing.... Im from Hawaii!!! Thankyou!

In hawaii we dont have a parkinson center like arizona. Did anyone go to the Muhammid Ali parkinson center? Im thinking of bringing my mom there!!!

By VioletV On 2013.08.19 20:52
My husband really enjoys (and has benefitted from) John Argue's book Parkinson's Disease and the Art of Moving.

Also you might look into LSVT-Big. We did this and my husband still is doing the Big exercises every morning. I see real differences in flexibility, range of motion, balance and awareness of his body in space.

Good Luck!
VV


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