Disappointed with our first visit to the ALS clinic

[taratune]

My brother had his first visit to the "multidisciplinary" ALS clinic yesterday. There was no Physical therapist, No Occupational therapist AND no Social Worker. Just a rude nurse, a doctor who offered nothing and a Respiratory Therapist who took a baseline reading of his breathing functions and said he was 107 % of expected....(at least this was good news.) They gave him a slip to come back to the ALS clinic in late July.

My brother is really having trouble getting around and we were really looking to talking to the PT for some mobility advise. My brother has been walking with a cane that he got from my father...but he has been getting pretty weak in one foot and can't feel it anymore. He has been pretty unsteady from time to time. Just after we left the hospital my brother fell on the sidewalk before we could get to the parking lot. My brother could not get back up.....even with my help. The security guard came over but we could hear the person on the other side of his walky talky telling him not to help pick him up.......that if my brother couldn't get up to call 911. Luckily my brother was ok he just couldn't get up. Well I had seen a wheelchair inside the entry and went to get it. Another security guard arrived and helped get my brother into the wheelchair and then to the car.

Today I made an appointment for my brother to be evaluated by a Physical Therapist at another hospital near where he lives. I hope they are familiar with ALS and will know how to help us. I was really hoping for more expertise at the ALS clinic.....but it seemed the whole trip was mostly just a waste of time. I would be interested in hearing from others about the medical care their PALS is getting and where we might find better care for my brother.....especially mobility advise. We live in San Diego.

Thanks so much,
Tara

[jimercat]

Tara,

I'm so very sorry y'all had a horrible visit at your ALS Clinic! Have you gotten with your local ALSA? They should be able to provide loaner items for help with mobility and advice regarding the disease itself. They will come to your brother's home to evaluate his situation. I'm sure they would be able to direct y'all to a better clinic. I'm on the east coast and not familiar with California ALS clinics, but they are probably listed on the ALSA.org site for your area. If you choose another, you may want to find out the lead physician's name and research him a bit before going. We are lucky to have Emory Clinic in Atlanta with a wonderful healthcare team that is compassionate and willing to go the extra mile for their patients.

As for going to the PT near your brother's home, I would send him/her plenty of info regarding ALS or direct them to the ALSA web site to be sure they new what they are dealing with so you will not have wasted time and effort again.

Good luck Tara! Your brother is lucky to have you looking out for him!

[sharonca]

Tara - I also live in So. CA. I know there is a new and supposedly great ALS clinic at Cedars Sinai in LA funded by ALS org. And the clinic I go to at UCLA is funded by MDA. I have been very happy with my treatment. Every visit I see the neuro, RT, PT, ALS/MDA rep. I know it is a drive from San Diego but may be worth the drive.

Sharonca

[andyvaughn]

Tara, I live in So. California also. My husband is seen at the ALS comprehensive care center at Cedars Sinai. We have also seen, for a second opinion, Dr. Graves at UCLA. The same therapists work at both clinics. I can tell you from personal experience that we are very very happy with Cedars. Dr. Muthukumaran is a very compassionate and loving doctor, and Hope, her nurse, is very responsive and compassionate also. When Jim was diagnosed Dr. Abi, (what we call her for short) literally held us while we cried. She is very wonderful. You may find the drive worth it?

[taratune]

Thank you all for your supportive and helpful comments. LA would be well worth the trip and we will look into making it if needed. I am feeling more encouraged......Today I spoke with a kind person at the MDA office here in San Diego and she told me that they have a muscle clinic at Children's hospital here in San Diego that see's adults with ALS and other muscle problems. They have a social worker there that I know will be helpful as well as PT, OT and also a communication tech type person that is associated with United Cerebral Palsy. If/When my brother is unable to talk we may have extra challenges because my brother is autistic and does not read or write. My brother is very high functioning and many people do not know that he has a problem unless they are around him for awhile. Because of the autism epidemic health care people who work with children are usually much more aware of some of the differences that "people on the autism spectrum" have and are more understanding and sensitive to their needs. In many ways my brother is a big kid and I think that the folks at Children's will better understand how to help him. Has anyone else received services via an MDA clinic or at a Children's hospital? I guess if it doesn't work out there is still LA and we may check that out for at least another opinion even if this new clinic works out great.

Thanks again for all your help and support,
Tara

[sharonca]

Tara - there are numerous posts on the patientslikeme forum by a family dealing with autism and ALS. The man with ALS (and autism) is Wally. I think you would be very interested in their posts.

Sharonca

[PDaddy]

ALSA also has clinics at Loma Linda, which is closer to San Diego than LA, so that's an option. I attended the last clinic there and it was fully staffed by the therapists you'd expect. Also, the Dr was great!!

[taratune]

Thank you so much for the support and ideas.

My brother is getting pretty wobbly and I fear we will be needing a wheelchair for him soon. I have heard that Medi-cal Medicare will only pay for a wheelchair for him once every so often. One source said 3 years another said 5 and yet another said 7 years.

Whatever the time frame I guess it is important to choose the wheelchair wisely with functioning difficulties in mind. We will also be needing a way to transport it. I am hoping to benefit from your experience here. What should I be thinking about? Any suggestions will be greatly appreciated.

Thanks in advance,
Tara
Sis of PAL

[MtPockets]

I would begin by checking with the MDA and ALS loaner programs. These links will get you started:
http://www.mda.org/equipment.html
http://www.alsa.org/
They have many items that they will loan out without charge to you.

Plan ahead for the worse. When considering a vehicle for transport, DO NOT get one with a lift on back. I did and regret it to this day. I should have spent a little more money and got one with a ramp to load the wheelchair inside the vehicle. Also check headroom clearance. I am 6 feet tall and have a problem finding a van that has enough headroom.

Wheelchairs come in various sizes, widths, weights, etc. You need to go to a showroom that has several models and find out what size you need.

I made a mistake on the first one I bought by getting an extra wide Ultra Light model. It would not go through most doors in a house. I do recommend the light weight models if you can get one. My wife has a bad back and when I was in a manual chair she would have to load and unload it.
Plan ahead for eventually going to a motorized chair. When getting one I recommend the electric controlled leg lifts, tilt feature, and a good quality air cell cushion like a ROHO that can be seen at:
http://www.southwestmedical.com/Wheelchair_Cushions_Backs/Roho_Cushions/Roho_Quadtro_Select_Cushion/2893p0
I use this one and sit in it all day most of the time and it is very easy on the backside.

[baker5131]

My name is Kimberly I'm 39 and my husband is 42. We live in Corpus Christi, Texas with our three children (Justin 19, Amanda 14 & James 9). We have been together since I was 14yrs old, will be married 21yrs this November. I've been ferverently combing the website and reading post after post looking for anything I can get: support, answers, hints etc. I'm so totally devasted by this news. My husband was diagnosed by a neuro doc 4-23-08(so this is al new to us). He said it was sporadic ALS. We don't know anymore specifics (as to whether its fast/slow progressing-which I learned from reading this site). He has lost 75% use of his left arm in 2months, fasciculations roaming to shoulders, right arm and legs now. It seemed to increase after we started Rilutek and Lithium. We go to San Antonio soon (I hope-they're still coordinating appointments) to see an ALS specialist and more testing. So I guess we aren't officially diagnosed til then? I have so much more to write but have to go to work (RN with pediatrics). :cry:

[kelly]

Hello Kim,
I am also 39 and my husband was diagnosed 2 years ago with bulbar onsel ALS. I understand the devastation that you are feeling. If you ever need to vent or chat, you can email me. Hang in there...take things day by day ...hour by hour...and minute by minute if needed. Fondly, KR

[andyvaughn]

Hi Kimberly
I am sorry to hear of your husband's diagnosis. This disease is very heartbreaking. My husband was diagnosed 2/20/08, with bulbar onset, that has rapidly advanced to his limbs. I promise you that the first month after the diagnosis was the absolute hardest, it is starting to get a tiny bit less painful now. Sounds like we are in similar life stages, I am 38, almost 39, and we have a 18 and 13 year old.
As far as increased fasciculations, my husband also seemed to have them at first on lithium, and many patients on the patients like me forum/spreadsheets have also reported the same.
I can tell you that his progression is finally starting to slow, after 2 months on lithium/rilutek. I hope that your husband experiences the same...
Andrea - wife of Pals Jim

[baker5131]

Thanks for the reply. I'm learning that I'm not the only one out there dealing with this and its a comfort to read entries. Thanks again, Kimberly

[MtPockets]

I'm so sorry to hear of your husbands Dx. I know this is the most difficult time for you and your family. I know it is hard to believe, but with time it will get somewhat easier. It is never the same after a Dx of ALS.

Most of us have learned to live one day at a time and live each day to it's fullest. If there are things you want to do as a family, now is the time to do them and enjoy what time you have together while your husband is somewhat mobile. Do not put off taking that special trip, etc. that you might have always wanted to do. Make some good memories now. Enjoy each other and life.

I regret having put off some things that we as a family had always wanted to do and now since I am in a wheelchair full time, it really limits our activities.

Please learn from our mistakes and trust God to give you the strength to make it through this.

[j5rj5r]

Hi Tara
I am the primary caregiver for my wife who has had ALS for 2 years.
On the wheelchair / transport issue: I put off getting a wheel chair and came to regret it. It took a couple of months to get the chair after we started the process. Then the chair we got is too high off the floor which makes transfers difficult. We are using a loaner from ALS of Ga. most of the time. We only use the new chair when she is going to be in it for an extended period of time because it is more comfortable. We tried the air cushion and it did not work well for my wife but may be fine for your brother. The loaner did not have thigh supports. This was no problem at first but as the disease progressed it became a big issue.
If you can gain access to an ALS loaner closet you could try out different chairs to see what features you need. The loaner closet has been invaluable to us. It lets you try something out before you go out and spend a small fortune just to find it don't do the job you thought it would. For transportation I bought a used full size van with a lift that loads from the side. I found it on craigslist for $6,000. It is old but in very good shape. I could have spent $40,000 for a van if I knew what lay ahead. I may need that $34,000 for something else she requires. There is a clearance issue with full size vans and the chair will not load with the seat back straight up but you can recline it to get through the door and it works fine.

James
In Ga.

[j5rj5r]

A word about bulbar onset. If your loved one looses their ability to speak do not let the speach theropist talk you into a light writer. One of the biggest mistakes I have made so far. The theropist reasoned that since my wife could carry (at the time) a light writer and could not carry a lap top then the light writer was a better choice for her. A month later she could not use the light writer so we had to get a lap top for her to be able comunicate with a mouse useing type to speach software. Why a speech theropist would even consider a light writer is beyound me. A lap top does so much more and cost less. My wife uses email to comunicate with all her friends and is able to use this forum with a lap top. She spends a good deal of time on the internet. She can still go shoping with a lap top. Not so with a light writer.

James

[CindyM]

Good tip. Most of us love to shop, lol!

[jimercat]

Hey James!

Welcome to the forum. I see you live on the west side of the ATL. Thanks for sharing your tips. Very helpful info!

[nurburch]

Hi Kim,
I am very sorry to hear about your husband. I can so relate. My husband was dx with sporadic ALS in nov 06.
and is in his wc all the time now. I too am a nurse and we have 3 kids 9,13, and 15. This diease is so hard
on everyone. Take the time to find all you can about the ALS asso. and MDA. They were great helps to us.
I hope your path has more smooth spots that ours has. Please do everything yall want to do now, don't
wait. My husband did not take the Lithum, he is on Rilutek only. Let me know what changes you see with
the combinatin of the two. I pray that it will work for him!!!! God bless you all.
SB

[paybackranch]

I simply love the staff at San Antonio's UT Medical Center. Dr. Patrick Grogan is just THE kindest man! We met Dr. Jackson at first (she is also awesome), but Dr. Grogan has moved heaven and earth to help us. I just can't say enough about the warmth and caring at this particular center. The MDA loaner closet is more than willing to help provide all that they can. Just love these folks. I will keep you in my prayers.

Melanie

[baker5131]

Thanks for letting me know how your visits to SA clinics are. My good news is that our appointment was moved up from July 11 to May 30!! So we go in 2 weeks instead of 2 months. I told my husband we should be realistic about our expectations. We probably will hear what we already know but at least I can get some more resource information and a more definitive diagnosis. Thanks for your replies, Kim (corpus christi, tx)

[Bobby C]

Melanie, we also go to the UT San Antonio HSC - the ALS Clinic. All members of the staff are great and caring. Dr. Robert Hermann did the EMG and NCS on me. We had a good time talking about mutual acqauaintances. He was fun to be with. Our next visit is June 18, 2008.

[paybackranch]

I just HAVE TO TELL YOU ALL that I got the most compassionate, thorough letter written on my husband's behalf by Dr. Jackson there at the San Antonio clinic !!!! I needed a Medical Hardship letter written by her to the Veterans Administration to activate his VA benefits. I am so very touched that she took the time to write such a detailed and thoughtful letter. Dr. Jackson is not only a research doctor, but teaches as well. The folks there in SA spend as much time as YOU need to answer questions and to put you at ease. I have never, ever felt rushed there and I have never seen a medical team bend over backwards to make something work like they do. I am so grateful to all of them for their caring for not only my husband, but for me. God Bless them all !!!

Melanie

[taratune]

I just wanted to say Thank You again to all who post and share their experiences for us all to learn from. They are so helpful for planning ahead and avoiding costly mistakes. I try to think things through but it is so hard to know what to do.

The next thing we need to do for my brother is move him into a new apartment. He currently lives in an upstairs unit and is now having trouble making it up and down the stairs. He does not have a wheelchair yet but I'm thinking he will need one.....sometime soon. So I want to make sure that his new place is wheelchair accessible. What types of features should I look for......what things (besides stairs) should I try to avoid? How wide do the doorways need to be? Can we just take off the door or change the hinges or do we have to have doors widened. How much clearance is needed in the bathroom? Oh so many questions.

Thanks ahead of time for any experiences and/or info you can share that will help me to better plan for my brother's needs.

Tara

[MtPockets]

Tara,
The wider the better when it comes to doors. Especially the bathroom door. My powered wheelchair is 26 inches wide, but I made my doors at least 32 inches to keep from hitting them when going through.
Do not take someone's word for how big the doors are, take a measuring tape along and check them yourself.
Watch out for entrance ways that have a big lip going up at the doorway. Some are a brick high. If so you can do as I did and buy a ramp for the entrance doors.
It is best to have a roll in shower for the future when he cannot get in and out of a bathtub. The threshold going into the shower needs to be at floor level if possible and room enough for a roll in shower chair to turn in and out of the shower.
A handicapped toilet, is a big help. These are higher than standard toilets. It helps to have room to access the toilet with the wheelchair where he can transfer right over to it. A big plus in the bathroom is a sink that has space under it for a wheelchair to fit.
Handicapped rails for support getting into and out of all these will be needed.
A wide enough bedroom to have room for some type of lift device by the bed, will be necessary as the disease progresses.
I hope this gives you some good ideas.

[sharonca]

Tara - my suggestions are that you can widen the doors an additional 2 inches by using the hinges that make the door flat when opened. I'm thinking these can only be purchased on line. If it is an apartment that cannot be permanently altered these would be a good idea. Second suggestion is a bidet toilet seat. Helps with privacy issues and just cleanliness in general. This also could be removed later to put back the original seat if your brother decided to move. Also purchased on line. I've been researching these for a foundation and the prices ranged from $400 to $700.

Sharonca

[taratune]

Thank you for the tips.

My brother fell on the floor while he was visiting my parents and they had a real hard time helping him up. Apparently his back and arm muscles are also getting weaker. He is still able to walk with a walker....but sort of makes funky high steps. He says that it is very uncomfortable to sit.....he wants to be on his stomach laying down or standing. His progression seems quick to me. ( He was diagnosed in early February.) Is there some kind of equipment other than a walker/wheelchair that he should have now? Maybe some kind of lift to help him up?

Thanks so much,
Tara

[MtPockets]

I use a lift chair, combination recliner, in my living room for watching TV during the day. It has heat and massage settings on it and raises up to almost an upright position for transfer to the wheelchair. I do not know if this was what you had in mind. There are hundreds of sites on line with information about them. Here is just one:
http://www.spinlife.com/critpath/match.cfm?categoryID=70

Lazy Boy also makes lift chairs and a friend of mine bought one several years ago and has had no problems with it. It is cheaper than buying one through a Medical outlet type dealer as they are available in local showrooms at furniture stores. One link to them is:
http://www.la-z-boy.com/furniture/catalog.aspx?colid=23

I paid a premium price for mine through a local Medical wheelchair dealer and have had it repaired 3 times in just one year. Lots of problems. Right now the heat is not working on it and they cannot figure out why. They had to replace the whole scissor mechanism that lifts the chair because the metal broke. The brand I got is called Medi-Lift. I would not recommend it.

I wish I had gone with a name brand like Lazy Boy.